Re: [CMLHope] Update on Marty G

['Susan Zimmerman' via CMLHope]

Dear Jeanie,


I had the same reaction about Marty's passing and was imagining how many others 
reacted or acted to the news.  My heart goes out
to you as you struggle with this pain and thyroid problem.  You know Who is in 
charge. Lean into Him and He will give you peace.


We are all in the same group here to lift each other up and keep on fighting, 
as Marty showed us so many times.  Let's only get closer as those who feel a 
nudge about sharing will give us an encouraging word.


Blessings and 18's,
Susan Z







-Original Message-
From: 'Jeanie' via CMLHope 
To: cmlhope 
Sent: Mon, Nov 12, 2018 9:26 am
Subject: Re: [CMLHope] Update on Marty G


I am so shocked and upset as I read this.  I have been waiting for an answer to 
a question I had about my thyroid and since he didn’t answer I knew something 
was wrong. 
He was a true fighter and kept us going in our horrible journey with leukemia.  
He must have been in a lot of pain to give up. 
I am in pain daily so I know what’s it like to just want it to be over. 
He was the leader of our pack and I’m
So sorry for your loss and ours. My prayers go out to you and family.  
Our list will never be the same.  
Love
Jeanie



My Motto:
Faith and Pills
With Love
Jeanie
free
Christian 
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal


On Nov 11, 2018, at 6:34 PM, 'Marcie Goodman' via CMLHope 
 wrote:



Dear Shelly and Family,


My deepest condolences on Marty’s passing. As so many of us in the group have 
expressed, Marty was our head cheerleader, a constant source of inspiration, 
support and love. He gave us a roadmap to navigate not only our illness but, 
more importantly, our lives. And he shared his challenges with honesty, facing 
each one with a strength of spirit that was unique. Marty let us know how much 
he loved you and your children and I know you feel a huge void now that he is 
gone. 


Please know that your family is in my thoughts and prayers. May warm memories 
of happier times comfort you in the days ahead. And may you all be comforted 
among the mourners of Zion and Jerusalem. 


Marcie Goodman 


Sent from my iPad

On Nov 11, 2018, at 4:24 PM, rszim0702 via CMLHope  
wrote:



Dear Shaun and family,


Would like to comfort you as your dad so often comforted each one of us. No 
words except what a marvelous, godly and extravagant legacy he left for you. He 
left it for the cml group as well! The time spent with each of us was his 
ministry of joy over us all. He will surely be enjoying many rewards in the 
afterlife. May each of us in this group strive to leave even a portion of such 
a legacy at our passing.


Our immediate reaction is to know what a huge hole will be left in the group 
and in our hearts. We called him our leader. Please know you are in my prayers. 
We will remember 18 stands for life and every day is a gift.  Wish I could 
attend his services. I will be thinking of you all.


18's, hugs, bigger hugs,
Susan Zimmerman



On Nov 11, 2018 1:54 AM, Marty Gartenberg  wrote:


Hello everyone - 


This is Marty Gartenberg's son, Shaun.  It is with great sadness for me to say 
that my father passed away this past week, on Wednesday, November 7th, after 
having entered hospice care the previous Friday, November 2nd.  I know many of 
you were good friends with him and that he helped a lot of people through this 
support group.


This all started with a bad fall over 7 weeks ago on September 15 in his garage 
where he fractured his left femur.  He subsequently underwent surgery to get a 
rod implanted in the bone to help it heal.  After a few weeks of physical 
therapy, a checkup showed that one of the screws needed to be adjusted, so he 
had a second surgery for that to adjust the rod, and add a plate.  After having 
more therapy, a MRSA infection was discovered in the incision wound.  He also 
contracted pneumonia.  In order to combat the infection, he had a third surgery 
on the incision to perform a debridement of the wound and was put on course of 
several antibiotics.  He was admitted to the ICU to be treated for the 
complications of the infection.


Unfortunately, all of this became just too much for him to take.  While he did 
show improvement medically, and eventually went from the ICU into a regular 
hospital room, he was in a lot of pain, which got progressively worse each day 
all over his body, and discomfort from the effects of the antibiotics.   
Eventually, he began denying his food and medication and reached a point where 
he did not want to continue to fight.  


Moving to hospice was a painful decision to make, especially knowing how much 
of a fighter my Dad was through all of the struggles he's been through in his 
life.  But, those were his wishes and 

Re: [CMLHope] Please answer to see if I’m getting my mail

['Susan Zimmerman' via CMLHope]

Hey Greenie!


I come also on Dec. 5th to see Dr. Altman in Chicago.  Let's meet up again!  I 
am also scheduled to see Dr. Kumthekar, a
neurologist right around the same time that day.  Mine is around 1:00 Chicago 
time, so let's discuss privately.  Right now I am
going out of town for two weeksbe back after Thanksgiving.  I have seen so 
many docs lately with severe pain in lower back
and this essential tremor. Also just got put on insulin for diabetes. Very 
small dosage. None are really related to cml, but they keep me hopping.  I fell 
off the chiropractor's table on Monday and really bruised and scraped myself up 
good on my left side.  Keeps life interesting!


Sorry I am in a hurry this morningwill catch up with you all very soon!  
Thinking about you all


18's and love,
Susan Z
-Original Message-
From: myvety2k via CMLHope 
To: cmlhope 
Sent: Thu, Nov 8, 2018 7:46 am
Subject: Re: [CMLHope] Please answer to see if I’m getting my mail



Jeanie, That's a yes on Sebring. Slower way of life, to much crime, to many hit 
and runs, to many people, can't drive anywhere without someone trying to run 
you off the road, cutting in front of you, etc. The list is long. I have 
nothing against snow birds but when they come down to Fort Myers and the beach 
is near they just take over everything.  A ride to Lowes in the summer time 
takes 5 min. winter its takes 15 to 20 min. because of so many cars.  It was 
time to move and NOW I can go Bass Fishing.


greenie



-Original Message-
From: 'Jeanie' via CMLHope 
To: cmlhope 
Sent: Wed, Nov 7, 2018 1:18 pm
Subject: Re: [CMLHope] Please answer to see if I’m getting my mail


Hi all
Good to hear from you. 
Has anyone heard from Marty?
Do you like Sebring Greenie?
This thyroid disease is getting me down.  I want to sleep all day and wake up 
around midnight.  It’s awful!!!
Pray that I will get it straightened out soon 
Have a safe trip Greenie and I hope you can get together with Beth. 
Love you so very much.  
Jeanie


My Motto:
Faith and Pills
With Love
Jeanie
free
Christian 
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal


On Nov 6, 2018, at 3:29 PM, bkbarney via CMLHope  
wrote:



i Hi Greenie, Congrats on your new home! And the bass boat So good to hear 
from you. Are you flying in on 
Tuesday the 4th for your Wednesday the 5th appointment? Would you like to have 
dinner together Tuesday evening? I could meet you near Northwestern? I would 
love  to meet you and Grace if she is coming. Let me know...you can email at my 
email. bkbar...@aol.com


Thanks!  


18's Beth



-Original Message-
From: myvety2k via CMLHope 
To: cmlhope 
Sent: Tue, Nov 6, 2018 6:07 am
Subject: Re: [CMLHope] Please answer to see if I’m getting my mail



Hi Beth, doing O. K.. Moved from South Fort Myers 2 months ago to Sebring, FL. 
Purchased a home there, Grace purchased me a Tracker bass boat so that I can go 
fishing, of course I'm making the payments.(smile).  Will be flying into 
Chicago on Dec 5th, Northwestern Hosp. to see my Doctor and my most loving 
thing (Blood Work). another smile.  Will let you all know how things turn out. 
Stay warm if you live North and Cool if you live South. Take care everyone.


Greenie



-Original Message-
From: bkbarney via CMLHope 
To: cmlhope 
Sent: Mon, Nov 5, 2018 12:06 pm
Subject: Re: [CMLHope] Please answer to see if I’m getting my mail


Dear Jeanie,


Just wanted to say I am here, thinking of you and everyone else... The year is 
slipping by...and next week snow flurries in Chicago. Soon it will be 
Thanksgiving, Christmas and the New Year!!! Sorry about all the thyroid 
troubles.. Hopefully they can help you get with the right meds...Ggod 
endocrinologist will guide you!!! You have had more than your share of health 
problems.. You are a real trouper!! Love your positive attitude. Remember to 
advocate for yourself. If you are not satisfied...or feel worse...keep asking 
for help! Each of us needs to do this...

I am doing O.K. Blood work for CML showing, but stable working on 
decreasing the inflammation in my body in the hopes that it might help my side 
effects and symptoms...still plugging along the stay positive attitude...is 
still finding meeven in the dark sometimes :), seeing the shadows so know 
the light is somewhere near by.


Love to all.. and Marty, hope you are healing welland Richard, and Susan 
and Suzie Q and Greenie and everyone reading.. Hope each of you has a lovely 
and healthier holiday season!!

18's Beth



-Original Message-
From: 'Jeanie' via CMLHope 
To: cmlhope 
Sent: Sun, Nov 4, 2018 11:14 am
Subject: [CMLHope] Please answer to see if I’m getting my mail





My Motto:
Faith and Pills

Re: [CMLHope] Bosulif and high blood pressure

['Susan Zimmerman' via CMLHope]

Hi Ann,
I have slightly elevated blood pressure and am on bosulif (very low 
dose...100mg every other day). Also take lisinopril 20 mg every day. It keeps 
me normalized. Just fyi. I sincerely hope your mom can find the right dosages.  
Prayer applied, too!

18's,

Susan F. Zimmerman


On Friday, July 27, 2018 'Jeanie' via CMLHope  wrote:

Hi Ann

I have high blood pressure. 
I’ve been in tki for years. I have tried all the blood pressure pills with no 
luck. They all make my heart hurt.  He is probably under a lot of stress. Try 
yoga and other calming exercises.  

They help some. 

My Motto:

Faith and Pills

With Love

Jeanie

free

18’s to Marty

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/ 2015 15 mg

New Doctor--Dr Martine Extermann

Moffitt Cancer  center sept 2017

Dr Balducci retired 

Dr Gedia PCD

0 CBL. ABL

Taking 0.05mg 50 mcg levothyroxine

July 2018 dx with thyroid disease tsh 13

T4-normal t3-normal


On Jul 26, 2018, at 12:47 PM, Ana Burgos  wrote:

Anyone on Bosulif is getting high blood pressure? 
Since my mum started Bosulif she has gone to emergency 3 times with very high 
pressure! 

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RE: [CMLHope] Fantastic cabin.

['Susan Zimmerman' via CMLHope]

Beautiful!!!

So glad yoy're enjoying.

Susan F. Zimmerman


On Saturday, June 9, 2018 'Jeanie' via CMLHope  wrote:

Hi all. I highly recommend this cabin if you want to visit The Great Smoky 
Mountains. I loved it.  Hated to leave. 

Love you so very much.  







My Motto:

Faith and Pills

With Love

Jeanie

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/ 2015

New Doctor--Dr Martine Extermann

Moffitt Cancer  center


0 CBL. ABL

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RE: [CMLHope] Jeanie

['Susan Zimmerman' via CMLHope]

What a great picture of you and your watermelon!

Thanks for the beautiful pics of your vacay. Never been there! We go to the 
Shenandoah mountains every couple of years ourselves.

Seize the day, Jeanie!
Love ya and 18's,

On Friday, June 8, 2018 'Jeanie' via CMLHope  wrote:






My Motto:
Faith and Pills
With Love
Jeanie
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015
New Doctor--Dr Martine Extermann
Moffitt Cancer  center

0 CBL. ABL
-- 
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Susan Z.

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Re: [CMLHope] New Canary hatchings

['Susan Zimmerman' via CMLHope]

I noticed that, too! (Jean)





Susan F. Zimmerman
A merry heart does good like a medicine.



-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Wed, Jun 6, 2018 12:08 pm
Subject: Re: [CMLHope] New Canary hatchings



Hey have a great time. Well one thing that bothers me. Since did you become a 
male subject? Now your sporting the name of Jean? Hey I hope that your still 
growing hair in all of the right places.


Marty



On Wed, Jun 6, 2018 at 11:00 AM, 'Jeanie' via CMLHope 
 wrote:

Hi all
I’m in The great smokie mountains with my 2 daughters. She rented a fantastic 
cabin with indoor and outdoor fireplaces. We have been having a ball. Headed to 
Chimney Rocks to picnic today. 
Tell more when I get home. 
Love you so very much 
Jean 


My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015
New Doctor--Dr Martine Extermann
Moffitt Cancer  center


0 CBL. ABL


On Jun 3, 2018, at 4:28 PM, Joyce Mesnarich  wrote:



Marty,
I love canaries.  But I have to say that your new babies are ugly.  Sorry about 
that harsh statement, but all baby birds are ugly.  I would like to see another 
picture when they have feathers.  Through my life I have had about 5 canaries 
but they always got sick and died.  I think that is a wonderful hobby to raise 
birds (with the exception of having to see them as babies without feathers).  
I’m sure they give you many hours of entertainment.  How many adult canaries do 
you have?  Do you have other birds as well?
When my Mom was in the nursing home they had a large bird cage and we would sit 
and watch them for long periods of time.
Please know that I am kidding about your ugly babies.  Don’t hold that against 
me.  They will be adorable in a short time.


Hope everyone is doing well and staying cool.  Here in the midwest we have had 
the coolest April on record…..and the HOTTEST May on record.  We missed spring 
it seems.


  Joyce in Southern Illinois





On Jun 2, 2018, at 11:52 PM, Marty Gartenberg  wrote:


Here are two new pictures of my newest baby canary chicks. 
There are two nests and the second has four eggs but so far they haven't 
hatched as yet.



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Re: [CMLHope] Peppers

['Susan Zimmerman' via CMLHope]

Hi Jeanie and Marty and all,
Just ckg. in since been absent awhile. Loved the pepper picture but you can 
have them all! My eyebrows start sweating just looking at them!

So thankful it's finally spring. Worked outside for 2 hours with hedgetrimmers 
and pulled all kinda muscles trying to do it. Got so much work to do outside. 
Little by little. Is that inch by inch it's a cinch? Not sure they are talking 
about yard work thoughlol

My numbers were good 3 months ago...another test coming up next week in 
Chicago. All good. I read an article today published from the UK that said an 
antibiotic and gleevec mixed is a cure. Never heard of the antibiotic but 
sounds interesting. Will ask my specialist next week. Couldn't retrieve the 
article when phone rang, etc.

Jeanie I pray your pain has let up. So glad Marty got to do the cruisin...and 
was not on the ship where pipes broke. And thankful no flu broke out on the 
ship! 

Enjoy every day as if it's your last, even tho of course it's not! Thankful I 
am in Indiana instead of Fla. for next 6 months! Blessings everybody,

Love and hugs,

On Monday, May 7, 2018 Marty Gartenberg  wrote:

Hi Jeanie,

Nice picture, but it's to bad that you have to post it under the circumstances. 
What i mean is that they aren't hear today standing with you in that picture. 
Although my farther once taught me that when a loved one passes on then they 
are still always with you especially in your mind and those that love you and 
everyone in your family.

Yes i do miss my parents, and brother and sister. She was the one that donated 
the bone marrow for me. We were only eleven years apart. My brother was four 
years older then me and when he past is was like the head of the family 
suddenly was gone. Very sad story but i know that they are still in me...

Jeanie, you mention that it takes a stick of explosives to get you going? Well 
at one time it also did for me but then i discovered that i may have been full 
of S**T  Humm am I getting to be a dirty old man?

18's, my dear Jeanie.

Marty

On Mon, May 7, 2018 at 5:11 AM, 'Jeanie' via CMLHope  
wrote:
Hi Marty
Hehe that’s funny me I’m just the opposite. Takes a stick of dynamite to get it 
working. I discovered miralax and finally found something that works. 
Anybody else have that problem?
I read somewhere you are supposed to go after each meal. Good luck with that. 
Love you so very much 
Jean

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015
New Doctor--Dr Martine Extermann
Moffitt Cancer  center

0 CBL. ABL

On May 4, 2018, at 5:10 PM, Marty Gartenberg  wrote:

Hi Jeanie,

Again your pictures just amaze me, but i am not into HOT things. If i ever eat 
any of them i will get up from sleep and dig into my bottle of magic flavored 
Tums or Rolaids, and depending on how hot it is i will usually run myself to 
the Porcelain Princess and bow my head and give her a shot of... Well you know 
what.  

Me and hot just don't get along.

18's,

Marty

On Fri, May 4, 2018 at 7:17 AM, 'Jeanie' via CMLHope  
wrote:

Hi all
Just picked peppers. I’m going to pickle them for hot sauce. Growing up my mom 
kept a bottle of green pepper hot sauce on the table. We sprinkled it on our 
collard greens and other greens my dad grew fresh. Yummy.  


My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015
New Doctor--Dr Martine Extermann
Moffitt Cancer  center

0 CBL. ABL
-- 
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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

['Susan Zimmerman' via CMLHope]

For me it's been 13 years.
18's,

Susan F. Zimmerman


On Saturday, March 10, 2018 Marty Gartenberg  wrote:

Hi Jeanie,


Wow 17 years! Good for you as well. My congratulates to you. Hey are you 
catching up with me? 30 years for me.

Time fly's by when your riding on the Marquis Express. Okay now lets all sing 
along all of you people out 
there...`\uD83D\uDE4E\uD83D\uDE46\uD83D\uDC81\uD83D\uDE4B\uD83D\uDE47\uD83D\uDE4C\uD83D\uDEB6\uD83C\uDFC3\uD83D\uDC83\uD83D\uDC6B\uD83D\uDC6C\uD83D\uDC6D\uD83D\uDC8F\uD83D\uDC91\uD83D\uDC6A


18's,


Marty 


On Sat, Mar 10, 2018 at 5:00 PM, 'Jeanie' via CMLHope 
 wrote:

I am celebrating 17 years also.  I'm on my 4 tki: Ponatinib. Been a rough ride. 
How bout you! 

My Motto:

Faith and Pills

With Love

\uD83D\uDC2018's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/ 2015

New Doctor--Dr Martine Extramine

0 CBL. ABL


On Mar 10, 2018, at 2:10 PM, Kristin Lieberman  
wrote:

I’m here. Celebrating my 17th year as a CML survivor!


Kristin 


Sent from my iPhone


On Mar 10, 2018, at 2:11 AM, cmlhope@googlegroups.com wrote:

cmlhope@googlegroups.com Google Groups  

Topic digest 
View all topics 

Hello - 1 Update 

Hello 

Marty Gartenberg : Mar 09 04:12PM -0500 

Hello, hello... Is anyone out there?
 
18's,
 
Marty

Back to top 

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RE: [CMLHope] Yahoo!! Yippie!!! I'm 0

['Susan Zimmerman' via CMLHope]

Sooo happy for your numbers, Jeanie! Maybe when they cut your meds in half that 
side pain will go away!!! I pray it does
18's and hugs,

Susan Z.


On Thursday, February 1, 2018 'Jeanie' via CMLHope  
wrote:
I saw my new doctor at Moffitt. Her name is Martine Extermine. She works also 
with the seniors and I liked her a lot but she had a lot put on her shoulders. 
Had to take over all Dr Balducci's patients. 
II got good news. I asked her what my last BCR ABL tests results were and she 
said 0's. Am I cured? I don't think they know but they are doing a study for 
those of us doing well on our test. It's cutting patients to half doses you 
have to be checked once a month. What does the group think about it?
Hope everyone is good today. 
Blessings. V


My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 

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Re: [CMLHope] anemia

['Susan Zimmerman' via CMLHope]

I am on bosutinib for over 2 years now. There are absolutely no side effects 
except diarrhea. This can be controlled with medicine. I am happy to be on this 
drug.

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Thursday, January 25, 2018 Jamie Tufariello  wrote:



On Friday, December 22, 2017, Ana Burgos  wrote:

Hello, 

my mum is suffering from very low hemoglobine and very low iron.

any of you happen the same?

another question is what do you think about bosutinib, after 14 years in 
gleevec the doc. is thinking of changing to bosutinib

what about side effects comparing it to gleevec?


thanks in advance




.

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RE: [CMLHope] Stating

['Susan Zimmerman' via CMLHope]

Thanks for answering, Jeanie. Was reading abt. your terrible side pain and doc 
cutting you offso maddening! I feel so bad for you and angry with these 
docs. Know i am praying for you.

18's and love,
Susan Z.




On Monday, December 25, 2017 'Jeanie' via CMLHope <cmlhope@googlegroups.com> 
wrote:

Hi Susan and no I never could take statins or blood pressure meds. Hurts my 
heart.  

I read where mustard is good for you and it had tumeric. I love mustard so I'll 
increase it. 

One thing I can be thankful for is Ponatinib leaves me with few side effects 
but it is so dangerous a drug to take. Blood clots and heart attacks.  God is 
taking care of me for sure.  I take 1 aspirin daily with my chemo. If you read 
the side effects of Ponatinib you would wonder why they are worried about what 
else you take. 

Have a fun New Years.  

My Motto:

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Dec 22, 2017, at 5:19 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Hi Jeanie!

Was wondering if you are on a statin drug for high cholesterol. Every statin 
drug causes achy joints in varying degrees for people. This is the biggest side 
effect of statin drugs. I refuse to go on them.  Was on lipitor for awhile 
until I did some research. But of course everyone can do their own thing.

I also take turmeric (a simple spice) with pepper combined to keep my 
inflammation in general down. It is very effective. Without something in pepper 
that helps the turmeric digest, you are wasting your turmeric. It does not 
absorb into your body without it. Everyone fights inflammation for one reason 
or another. Just a tip.

Also fighting essential tremors and other things, besides the cml. Beginning 
another new drug today to help tremors. In reference to Marty saying we can all 
feed ourselves, pee, etc. Funny, but I am trying to learn to eat with my other 
hand because I shake too bad with the usual hand. S thankful I am somewhat 
ambidextrous! But typing has become a problem. Did I mention I am so thankful I 
can pee, sleep, chew food, walk, talk and especially laugh?  My husband makes 
sure of that.

Have wonderful holidays and enjoy every day!!!
Thanks Marty for making us all laugh!!!
18's,
Love and prayers,
Susan Z.




Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Friday, December 22, 2017 'Jeanie' via CMLHope <cmlhope@googlegroups.com> 
wrote:

Hi all,

Have you considered Moffitt cancer center. I go there and like it. You go to 
the blood center and get your blood checked and then in about an hour they are 
faxed over to doctor and you see him. I go every three months. 

I was wonder if any of you have your bones aching?  My right little finger and 
hand ache and legs hurt sometimes at night. I've been fighting cml for almost 
14 years and never had this. Blood counts are all good. Thanks all.  

My Motto:

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Dec 21, 2017, at 6:56 PM, Marty Gartenberg <wa2...@gmail.com> wrote:

Listen Greenie,


This is what i do because of a promise that i once made to GOD. Let me tell you 
about this.

When i was about to receive my total body radiation almost 30 years ago,


 just before they were about to close and lock that radiation chamber door i 
got down on my knees clasped my hands in front of me and prayed to GOD asking 
HIM if he would spare me i would help people that were in my situation that i 
would try to help them. So far i have helped 1,286 people in the past 30 years, 
and wrote my journal about each and every one of them. This will never be 
published because of confidentiality reasons, but on occasion i will send some 
of them parts of my book in order to try and help them.


Listen i am no saint just a plain human being but someone that once made a 
promise to GOD and i am still here after many many death defying things that i 
have gone trough. And that is why i do what i promised to do. I hope that you 
understand why i do what i do...


There is also why i write 18's when ever i end any posts that i make, because 
that is what i believe. 18's to me represents LIFE.


If you care to send me your personal email address i would like to send you 
something. Mine is wa2yyx@gmail,com


18's,


Marty 


On Thu, Dec 21, 2017 at 4:28 PM, Myvety2k via CMLHope 
<cmlhope@googlegroups.com> wrote:

Marty, I want to thank you for your fast reply, I hear you.  I do have a 
Nephrologist and he had me get some blood work last month and he seems to be 
O.K. with the results.  I do have the paper work and will scan it and 

Re: [CMLHope] Well wishes

['Susan Zimmerman' via CMLHope]

So thrilled that infection is gone, Marty! No place like home. And yes, I would 
also like that recipe! 

Love and 18's,

Susan Z

On Sunday, November 26, 2017 Joyce Mesnarich <joy...@htc.net> wrote:

So glad that you are out of the hospital and in the comfort of your own home.  
Your mushroom, barley and meat soup sounds delicious.  I would appreciate the 
recipe, if you are willing to share.  I don’t have a pot that large, but could 
cut the recipe down.  Always nice to have something on hand for a quick meal.


Best wishes for your continued recovery.


            Joyce in Southern Illinois



On Nov 26, 2017, at 2:40 PM, Marty Gartenberg <wa2...@gmail.com> wrote:


Hi everyone,


Just to let everyone know that I am back from the hospital as of yesterday 
afternoon. The infection is gone but i have to stay on oral antibiotics for the 
next two weeks, a small price to pay i guess. In the past several weeks i have 
heard so many others having to be hospitalized including some of my neighbors 
and friends. Can't figure out what is going on lately but hopefully this will 
not become any worse but better in the near future.


So as it stands the only after after-effects i am suffering with are some 
vertigo and some small headaches but they are probably from the antibiotics.   


But when there is also something that comes down then there is always comes 
something that comes good as well. Unfortunately i missed our traditional 
Thanksgiving dinner but there is also a bright side. Just before i had to go 
into the hospital i was lucky enough to make my delicious mushroom and barley 
soup with meat cut up into small cubes and of course bone marrow soup bones. It 
was only just before i started feeling ill. I usually make about 10 or 12 
quarts and freeze them for later use. This recipe was past down to me by my 
parents who were both  master cooks in Europe.


Now when i was in the hospital my wife brought me some of this soup and at 
least i was able to get away from this "hospital food" at least for the time 
being.


If anyone wants the recipe then just let me know.


So you can see that there is more then just sitting back and feeling miserable 
when you occupy yourself with things that make you more productive in your 
live. I do this all of the time and it seems to always help me.  


Hot soup anyone?


18's,


Marty


On Sun, Nov 26, 2017 at 2:05 AM, Joyce Mesnarich <joy...@htc.net> wrote:

Marty, so sorry to hear that you have been plunked down in the hospital.  But 
you will beat those bad germs and be back out quickly.  I am praying for you.  

        God bless and keep you.

              Joyce in Southern Illinois



On Nov 25, 2017, at 1:38 PM, 'Jeanie' via CMLHope <cmlhope@googlegroups.com> 
wrote:


So sorry Marty. Prayers are being sent with lots of love.  You are the bravest 
and you will be home soon.  

How did you get the infection?

Hope you get lots of good care.  

Sending you lots of love and holiday cheer 



My Motto:

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Nov 23, 2017, at 6:31 PM, Martin Gartenberg <wa2...@gmail.com> wrote:

Hi everyone

Unfortunately I am back in the hospital again I have a server infection in my 
left leg and I am on some Antibiotics now. I wish I could be home for the 
thanksgiving holiday but I just do whatever I have to do.
Anyway I wish all of you a happy thanksgiving
18's

Marty 



On November 23, 2017, at 2:49 PM, bkbarney via CMLHope 
<cmlhope@googlegroups.com> wrote:


Warmest regards to you Susan and  have a lovely Thanksgiving holiday with your 
family..Laying low and cozy by the fire is lovely...I wish you better health 
and lots of joyful moments in the New Year ahead...
Thanks for being here.


Love to all on this Thankful holiday

18s Beth

-Original Message-

From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Wed, Nov 22, 2017 4:43 pm
Subject: RE: [CMLHope] Well wishes

Happy Thanksgiving to all! I pray you all are well enough to enjoy the 
holidays. Ours will be quiet and cozy by the fire. Turkey on the menu. So glad 
I am part of this awesome and loving group.

Just got my numbers back from bcr/abl. It showed .45. Last time was .26. Not 
doing badly but was shocked when doc asked me if I wanted to go off med. 
(History of strokes caused by med.) First time she's asked me that! She does 
not recommend it, so I'll stay on awhile longer and then let my body rest. 
Toxins build up and cause stress on my blood spots in brain.

18's and Happy Thanksgiving
Much love,

Susan Z.

On Wednesday, November 22, 2017 Myvety2k via CMLHope <cmlhope@googlegroups.com> 
wrote:

CML group, As of Dec 5th I will no longer be using AOL.  My new email will be

Re: [CMLHope] Please I need your help

['Susan Zimmerman' via CMLHope]

Sorry, don't think I ever heard this man's name.  God bless you Marty, and all 
are in my prayers.
Don't anybody wear themselves out on Thanksgiving.  Keep away from today's 
goblins, they may spook you!


"Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you."  Hab. 
1:5  We are very near a cure!  Going to Northwestern tomorrow for my 3 month 
testing.  So happy for you, Beth!


Give thanks,
Susan Z



-Original Message-
From: bkbarney via CMLHope 
To: cmlhope 
Sent: Mon, Oct 30, 2017 9:50 pm
Subject: Re: [CMLHope] Please I need your help


I don't remember Marty, but I will look back in our past group conversations. 
If it's anything saved, I will forward it to you. Hope all is well with 
everyone. My 
BCR results came back stable!  A blessing!!! Dr. Druker is referring me to a 
colleague of his that specializes in some of my side effect issues so I am very 
grateful! The new doc is hard to get into, so it will be a few months, but 
hopefully he can help me.


Much love to everyone. 
Thanks. Beth




-Original Message-
From: 'Jeanie' via CMLHope 
To: cmlhope 
Sent: Mon, Oct 30, 2017 5:35 pm
Subject: Re: [CMLHope] Please I need your help



So sorry Marty don't remember it at all. Would it be on any of our old 
messages. You can search them on line. 
Happy Holidays all.  

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 


On Oct 30, 2017, at 6:51 AM, Marty Gartenberg  wrote:



You all know me, and i have to ask all of you a favor especially some of the 
"old timers" of this group, like Bobby Dole, Zavie's Zero Club member 840 or 
Susan Zimmerman and anyone that knew Zavie Miller going back about twenty years 
ago. I wish that Zavie were still alive but i know that he would have 
remembered.


I know of a man that had a BMT recently and he was doing well because his HLA 
match was perfect and his BMT was an Allogeneic transplant. Yes, from what I 
understand this man may either be relapsing or rejecting his BMT.


At the time of my "travels" i heard of a man who did have an Allogeneic 
transplant (BMT) and relapsed, however he was given from his original donor 
some of their Lymphocytes and he compleatly recovered.


My dilemma is I just can't remember who he was. So please if anyone can 
remember then i kindly ask that if anyone does remember then please get in 
touch with me. Also please spread my request to anyone from any other groups.


Thank you.


18's


Marty, Zavie's Zero club member 1

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Re: [CMLHope] Right hand numb

['Susan Zimmerman' via CMLHope]

Hi All,
Jeannie, in response to your question. I was on gleevec 400 mg for 2 yrs...then 
my face and arm went numb while I was in a doc's office- taking someone else 
for their appt.

I was ambulanced across the street to the hospital. After many visits to 
neurosurgeons, they could only come up with cavernous malformations on my 
brain. They should not cause strokes. It was not the blood clot type of stroke, 
btw.

At that point in 2007 I went off all meds for cml. I decided better to let 
numbers slowly rise than die or drool from strokes. So thank God my vision 
returned to normal and hearing after 3 mos. I did have another stroke in 2010 
without being on a tki. I was exercising at the time. I stayed off meds for 7 
years.

They tell me at Northwestern I have pinpoints of blood in all parts of my 
brain. They are just waiting to burst. I must tell you i tried all of the tki's 
except ponatinib and they all gave symptoms of stroke.

In bcr/abl tests i stayed below 10 for those yrs. Until 2014 when I agreed to 
get on bosulif at only 100 mg. a day instead of standard 400 mg. All went fine 
and I was blessed to stay undetectable. Then in Dec. Of 2015 my numbers jumped 
just a bit. Still under 1.0 but I agreed to go up to 200mg a day. 10 days later 
I had another stroke. No major damage remained. I stayed off bosulif for 8 
months. Now I take 100mg every other day. So far so good!

Sorry for such a long letter. Thanks to my blood buddies for all yr. prayers. 
You do have mine!
Jeanie, sure hope the elbow adjustment will right all the wrongs! Another 
gentleman wrote that this corrected his problem. We hope!!! You always have a 
great attitude, Jeanie. 

18's

Susan f.

On Monday, October 2, 2017 'Jeanie' via CMLHope <cmlhope@googlegroups.com> 
wrote:

Hi Susan and thanks 

Can you explain how you went through your stroke?

Thank you

❤️❤️❤️❤️

My Motto:

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Sep 27, 2017, at 9:57 AM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Sorry Jeanie,
I have numbness in left side due to a stroke but never what you are describing. 
Hope somebody else can help! Meanwhile you are in my thoughts and prayers, as 
is everybody else in our group!
18's,
Susan Z.

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Wednesday, September 27, 2017 'Jeanie' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Hi all
I've been having anew side effect from something and was wondering if anyone 
else has it too. I wake up with my right hand hurting real bad-being numb and 
especially painful in pinkie finger. Now the whole hand hurts. Any ideas?

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 

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RE: [CMLHope] Right hand numb

['Susan Zimmerman' via CMLHope]

Sorry Jeanie,
I have numbness in left side due to a stroke but never what you are describing. 
Hope somebody else can help! Meanwhile you are in my thoughts and prayers, as 
is everybody else in our group!
18's,
Susan Z.

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Wednesday, September 27, 2017 'Jeanie' via CMLHope 
 wrote:
Hi all
I've been having anew side effect from something and was wondering if anyone 
else has it too. I wake up with my right hand hurting real bad-being numb and 
especially painful in pinkie finger. Now the whole hand hurts. Any ideas?

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 

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Re: [CMLHope] Words OF WISDOM.

['Susan Zimmerman' via CMLHope]

Hi Greenie, so glad all is ok regarding your house. Maybe next time you are up 
you will come for dinner.

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Saturday, September 16, 2017 Myvety2k via CMLHope  
wrote:

Hi Susan, We only stayed 2 days because be found out that our electric was out 
less then 24 hours so we handed home to see if we had a house and it was in One 
Piece.  No damage, very Lucky not so for many people.

 

greenie

 

In a message dated 9/8/2017 4:04:11 P.M. Eastern Daylight Time, 
cmlhope@googlegroups.com writes:

Hey Greenie,
So glad you are coming to visit! If you want to come over and visit our 
underground earth home, let us know!!! Would love to see you and Grace. We are 
in Granger.

Susan and Roy Zimmerman



On Friday, September 8, 2017 myvety2k via CMLHope  
wrote:

Hi all, Grace and I are getting out of dodge.  We are  heading for Indiana to 
stay with family.  After this is over I hope we have a home in Fort Myers to 
live in.   And my pure Corvette I hope it's still their.  Stay safe.


greenie


In a message dated 9/7/2017 9:28:12 PM Eastern Standard Time, wa2...@gmail..com 
writes: 


Hi Marcie, 


Glad that you found my story interesting. I live in Boynton Beach about 90 
miles north of Miami.


18's,


Marty


On Thu, Sep 7, 2017 at 9:21 PM, 'Marcie Goodman' via CMLHope 
 wrote:

Marty,


Such a beautiful story which brought me to tears. Thanks, as always, for 
sharing. By the way, you aren't in Miami now are you?


Marcie 

Sent from my iPad


On Sep 7, 2017, at 9:11 PM, Marty Gartenberg  wrote:

Joyce, Jeanie and everyone here, 


I learned something a very long time ago. If you or someone else looks out of a 
window then it is what they see that can make a big difference in their lives. 
I wrote this story a very long time ago and i always remembered it. It wasn't 
necessarily what this person would see but it was something that was explained 
to make "someone" happy for what they were able to "see"


Now over the years that followed i have seen this plagiarized and it really 
hurt me, but i assure you that i am it's original author. There are many 
details in it that i personally went through. 


                                              The Window  

There were two men in the cancer ward of Mount Sinai Hospital in New York City. 
They were in Ward KCC-6 North, which was at that time the cancer ward at that 
hospital. Both of these men were suffering from the end stages of Leukemia. 
They were there basically to die. One of these men had his bed right next to 
the only window in the room. The other one was across the room and had no 
access to the window. The man by the window would always tell the other man how 
beautiful it was looking out of that window, and let him know what was 
happening outside. He would talk about the beautiful skies, and how all of the 
little children were playing in Central Park. He would tell about the green 
grass and the people who were having a picnic, and the dogs that were running 
around, as well as the ice cream truck with the man selling ice cream pops to 
the little children, and the hot dog vendor also selling hot dogs with mustard 
and sour kraut. He would tell the other man that he would be able to see all of 
this for himself once he was healed. This went on for about two weeks, and one 
morning the nurse came into the room as she usually did, and presented these 
two men with their sponge baths. She first went over to the man who was by the 
window to find that he had passed away in his sleep. She then covered him up 
and left the room for a couple of minutes. When she returned, there was a 
doctor with her. This was a fairly new young doctor who would pronounce the man 
dead, and at that particular time, 8:40 a.m. even though he had obviously 
passed away some time during the night. The other man across the room with 
tears running down his cheeks became quite depressed at seeing his roommate 
wheeled out of the room, declared dead. He thought about how this man would 
always try to make him happy with him describing all of the nice things he was 
able to see outside. Later on that day the nurse returned and made up the bed 
in the room that was now unoccupied. The man in the other bed asked if by any 
chance he would be able to be put by the window. The nurse was a very kind and 
compassionate woman besides being a very competent nurse, and she wheeled him 
over. Although this man was unable to prop himself up to see the outside 
because he had recently had his Spleen surgically removed, he tried but finding 
it was just impossible. The next day came, and he again tried and although he 
was in a great deal of pain he managed to very slowly prop himself up and peer 
out of that most appealing window. He was absolutely shocked at 

Re: Re: [CMLHope] Words OF WISDOM.

['Susan Zimmerman' via CMLHope]

Hey Greenie,
So glad you are coming to visit! If you want to come over and visit our 
underground earth home, let us know!!! Would love to see you and Grace. We are 
in Granger.
 

Susan and Roy Zimmerman

On Friday, September 8, 2017 myvety2k via CMLHope  
wrote:

Hi all, Grace and I are getting out of dodge.  We are  heading for Indiana to 
stay with family.  After this is over I hope we have a home in Fort Myers to 
live in.   And my pure Corvette I hope it's still their.  Stay safe.


greenie


In a message dated 9/7/2017 9:28:12 PM Eastern Standard Time, wa2...@gmail..com 
writes: 


Hi Marcie, 


Glad that you found my story interesting. I live in Boynton Beach about 90 
miles north of Miami.


18's,


Marty


On Thu, Sep 7, 2017 at 9:21 PM, 'Marcie Goodman' via CMLHope 
 wrote:

Marty,


Such a beautiful story which brought me to tears. Thanks, as always, for 
sharing. By the way, you aren't in Miami now are you?


Marcie 

Sent from my iPad


On Sep 7, 2017, at 9:11 PM, Marty Gartenberg  wrote:

Joyce, Jeanie and everyone here, 


I learned something a very long time ago. If you or someone else looks out of a 
window then it is what they see that can make a big difference in their lives. 
I wrote this story a very long time ago and i always remembered it. It wasn't 
necessarily what this person would see but it was something that was explained 
to make "someone" happy for what they were able to "see"


Now over the years that followed i have seen this plagiarized and it really 
hurt me, but i assure you that i am it's original author. There are many 
details in it that i personally went through. 


                                              The Window  

There were two men in the cancer ward of Mount Sinai Hospital in New York City. 
They were in Ward KCC-6 North, which was at that time the cancer ward at that 
hospital. Both of these men were suffering from the end stages of Leukemia. 
They were there basically to die. One of these men had his bed right next to 
the only window in the room. The other one was across the room and had no 
access to the window. The man by the window would always tell the other man how 
beautiful it was looking out of that window, and let him know what was 
happening outside. He would talk about the beautiful skies, and how all of the 
little children were playing in Central Park. He would tell about the green 
grass and the people who were having a picnic, and the dogs that were running 
around, as well as the ice cream truck with the man selling ice cream pops to 
the little children, and the hot dog vendor also selling hot dogs with mustard 
and sour kraut. He would tell the other man that he would be able to see all of 
this for himself once he was healed. This went on for about two weeks, and one 
morning the nurse came into the room as she usually did, and presented these 
two men with their sponge baths. She first went over to the man who was by the 
window to find that he had passed away in his sleep. She then covered him up 
and left the room for a couple of minutes. When she returned, there was a 
doctor with her. This was a fairly new young doctor who would pronounce the man 
dead, and at that particular time, 8:40 a.m. even though he had obviously 
passed away some time during the night. The other man across the room with 
tears running down his cheeks became quite depressed at seeing his roommate 
wheeled out of the room, declared dead. He thought about how this man would 
always try to make him happy with him describing all of the nice things he was 
able to see outside. Later on that day the nurse returned and made up the bed 
in the room that was now unoccupied. The man in the other bed asked if by any 
chance he would be able to be put by the window. The nurse was a very kind and 
compassionate woman besides being a very competent nurse, and she wheeled him 
over. Although this man was unable to prop himself up to see the outside 
because he had recently had his Spleen surgically removed, he tried but finding 
it was just impossible. The next day came, and he again tried and although he 
was in a great deal of pain he managed to very slowly prop himself up and peer 
out of that most appealing window. He was absolutely shocked at what he was 
able to see, or to put it another way, what he was unable to see. There was 
nothing there but a brick wall! He wondered why that man would always tell him 
about what a beautiful world it was out there when in fact there was nothing 
but that brick wall. At about that time the nurse came in with his sponge bath. 
He immediately without any reservation asked her why the man would always tell 
him about what was happening outside when in fact he wasn't able to see 
anything. The nurse then told him that he was correct. The man who had been by 
that window was in fact not able to see anything because he was blind.

 

 The man then realized 

Re: [CMLHope] Gleevec

['Susan Zimmerman' via CMLHope]

So sorry Marty has been in hospital and now rehab. A broken knee and tibia? 
Maybe you fell again? Sounds like things are looking up regarding release from 
rehab and selling your house. God bless you for keeping a positive attitude. We 
all love you, Marty. Tell Shelly we are praying for her, too! You know it will 
work out. Main thing is to enjoy every day, even if you are in rehab. 
Muuuwwwh! Hugs and kisses.

18'S,

Susan Z.

On Thursday, August 10, 2017 Myvety2k via CMLHope <cmlhope@googlegroups.com> 
wrote:

Marty, glad to here your doing O. K.

 

greenie

 

In a message dated 8/10/2017 11:36:53 A.M. Eastern Daylight Time, 
wa2...@gmail.com writes:

Hi Beth and everyone 


First glad no dialysis. Been there and done all of that.


I have been in the hospital for two weeks due to a broken knee and a tibia 
finally in rehab now for the past three weeks with two weeks left. I am now in 
PA because we are trying to sell our house up here. I feel sorry for my wife 
Shelly because all of this in on her now. but she is a very strong woman.


On Oct 21 we will be leaving the rehab felicity go back to our house  and stay 
there for about a week and drive back to Florida with my wife and son who will 
share the driving. Our daughter Meredith will be flying back to Florida.just 
before we leave PA.


Anyway i have been reading all of your posts so i basically know what is going 
on.


Please say hello to everyone for me.


18's,


Marty  


On Wed, Aug 9, 2017 at 11:48 PM, bkbarney via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thanks Susan, 


No dialysis. Just navigating muscle deterioration at an accelerated rate which 
makes it hard to move, let alone exercise...just a significant rough patch, but 
trying to navigate it the best I can. I had little to give anyone for a while, 
but feel better able to be a contributing part of our community again. I know 
many do not write, but feel less alone just reading..I just became one of those 
people for a time.. I will try to be better about speaking up when I am 
struggling. 


Love to all,


18's Beth 




-Original Message-----

From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: rbhuffman1 <rbhuffm...@gmail.com>; cmlhope <cmlhope@googlegroups.com>
Sent: Wed, Aug 9, 2017 6:38 pm
Subject: Re: [CMLHope] Gleevec

Beth, my heart goes out to you from all you've gone through since last 
September. You have always been a great encourager to all of us.
I am sure I speak for all in saying we missed you tremendously and hope you 
will have no more setbacks. Obviously those kidneys are so important to 
function properly. I hope you've not had to go on dialysis?

Hoping and believing you continue to get better. You are so right about Dr. 
Druker and glad you are going to see him.  Hang in there, we really really love 
you!

Richard, trying hard not to preach! Prayers, though!

18's, xoxo

Susan Z.

On Tuesday, August 8, 2017 Richard H <rbhuffm...@gmail.com> wrote:

Thanks for the update.  I hope all keeps going well. 


No preaching today, you are under control and I hope you continue to get better.


Richard H.

On Tuesday, August 8, 2017 at 12:33:13 PM UTC-5, Beth wrote: 

Dear Susan, Jeanie, Marty, Richard, Greenie et all,  


So sorry I have not been communicative for a long while. I am coming up after a 
really hard year physically and with many losses...sifting through 6000 
emails...I realize how much I have missed just our groups banter, and love


Hope each one of you is enjoying moments of sunshine...and holding on to the 
love that is in our group. I rely so often on the stories of others to inspire 
me, give me perspective...to hold hope for a better tomorrow and to stand tall 
in the belief that "This too shall pass" as my dad used to say...when things 
were really bad..  I had a rough year starting last September with heart 
issues, then got worse in December...and stayed struggling through the 
spring...starting to feel a bit strongerstill vulnerable, but fighting 
spirit is back...and I am here...to see the hummingbirds out my window...flox 
is in full bloom75 degrees  and sunny today.so life is good for 
now...later today seeing the cardiologist to swap medicines...then oncologist 
Friday. CPK stil supper high so muscle continues to waste..I hardly recognize 
myself and its affected my kidneys..all the protein going through them...Will 
get blood work done in a couple of weeks at U of C...last test in June had 
cancer showing...at low levels...had to go off for a drug holiday because of 
toxicity...so only back on for three weeks. We shall see how I am doingI am 
seeing Dr. Druker in October...he always makes me feel hopeful and calmhe 
has a way about him that invites this...and for which I am always so grateful..


I know each of you has had your strugglesphysically and emotionally...I 
think of you often and pray for each of you every nightGreenie, esp

Re: [CMLHope] Gleevec

['Susan Zimmerman' via CMLHope]

Beth, my heart goes out to you from all you've gone through since last 
September. You have always been a great encourager to all of us.
I am sure I speak for all in saying we missed you tremendously and hope you 
will have no more setbacks. Obviously those kidneys are so important to 
function properly. I hope you've not had to go on dialysis?

Hoping and believing you continue to get better. You are so right about Dr. 
Druker and glad you are going to see him.  Hang in there, we really really love 
you!

Richard, trying hard not to preach! Prayers, though!

18's, xoxo

Susan Z.

On Tuesday, August 8, 2017 Richard H  wrote:

Thanks for the update.  I hope all keeps going well.


No preaching today, you are under control and I hope you continue to get better.


Richard H.

On Tuesday, August 8, 2017 at 12:33:13 PM UTC-5, Beth wrote:

Dear Susan, Jeanie, Marty, Richard, Greenie et all,  


So sorry I have not been communicative for a long while. I am coming up after a 
really hard year physically and with many losses...sifting through 6000 
emails...I realize how much I have missed just our groups banter, and love


Hope each one of you is enjoying moments of sunshine...and holding on to the 
love that is in our group. I rely so often on the stories of others to inspire 
me, give me perspective...to hold hope for a better tomorrow and to stand tall 
in the belief that "This too shall pass" as my dad used to say...when things 
were really bad..  I had a rough year starting last September with heart 
issues, then got worse in December...and stayed struggling through the 
spring...starting to feel a bit strongerstill vulnerable, but fighting 
spirit is back...and I am here...to see the hummingbirds out my window...flox 
is in full bloom75 degrees  and sunny today.so life is good for 
now...later today seeing the cardiologist to swap medicines...then oncologist 
Friday. CPK stil supper high so muscle continues to waste..I hardly recognize 
myself and its affected my kidneys..all the protein going through them...Will 
get blood work done in a couple of weeks at U of C...last test in June had 
cancer showing...at low levels...had to go off for a drug holiday because of 
toxicity...so only back on for three weeks. We shall see how I am doingI am 
seeing Dr. Druker in October...he always makes me feel hopeful and calmhe 
has a way about him that invites this...and for which I am always so grateful..


I know each of you has had your strugglesphysically and emotionally...I 
think of you often and pray for each of you every nightGreenie, especially 
you and your wife,this first year of grieving Derek...your 
anniversary.so hard to bare...I m holding 7 clients who have lost adult 
children in my practice. I brought them together in a group to so they could 
meet one another and share their stories, introduce their children and share 
their grief.

 

I thought of you and wondered if something like that might be helpful to you..I 
know there are many supports in your area through local hospices and I think 
Health Park...God willing I will be down by you in December as I was supposed 
to be last year before everything erupted..

Hope to one day give you a big hug. 


and to the rest of you..love, hugs and 18'sit feels good to write 
something...



Beth


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RE: [CMLHope] Gleevec

['Susan Zimmerman' via CMLHope]

Hello and welcome back Ken!  Congrats on becoming a grandfather. It's a great 
experience, eh? I have four, only two of which are still children.

Glad you are still in the battle. Whatever the outcome, we win the war!


Susan F. Zimmerman


On Tuesday, August 8, 2017 Ken Roberson  wrote:
Good morning everyone,
I just discovered that this site is still active.
I have been on Gleevec for 17 years with good results, but have had additional 
medical challenges.
I was a member of the original participants for the STI571(Gleevec) at Johns 
Hopkins Hospitals in Baltimore after trying everything else on the market for 
CML with no success.
I am now 75 and thanks to God, family, and numerous medical staff I have been 
around long enough to have become a grandfather.
Very best wishes to everyone in their battle with cancer.
Ken Roberson

Sent from my iPad

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Re: [CMLHope] Stopping Gleevec

['Susan Zimmerman' via CMLHope]

Greenie,

I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in 
Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u 
get your medicine. A lot less expensive to go there!!!

Blessings,

Susan F. Zimmerman

On Sunday, August 6, 2017 Myvety2k via CMLHope  wrote:

Jeanie thank you I wait and see what happens if things don't work out for me I 
will go their.

 

greenie

 

In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, 
cmlhope@googlegroups.com writes:

Hey Greenie,

I would like to suggest Moffitt cancer center here in Tampa. They will do 
everything to help you to get your meds. It's where I go and they have saved my 
life twice.  They accept Medicare and medicate assignment.  If you need help 
with copayment a there is a cancer copayment company called PSI. They paid my 
copayment for several years. You just need to start making calls and get the 
ball rolling.  However I pray they keep sending the meds. You and I have been 
fighting this for years. 

I go to dr Balducci head of senior oncology center in Moffitt but the head of 
leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of 
Drs meeting for bloodwork right at hospital and by the time you meet your dr 
your blood work is done for him.  Every three months they do a PCR.  They have 
vallet parking. 

Praying for you. 

Jeanie❤️❤️❤️❤️


My Motto: 

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope  
wrote:

Hi Rien,   I started a study the first week in Jan. 2000 at Northwestern Hosp. 
in Chicago at 400 mg each day before it was approve my the FDA. They changed it 
later to 300 mg because of the Gleevec rash.  I got sick in 2009 and stopped 
Gleevec for 26 days because of sinus infection and the Doctor at home put me on 
an antibiotic which made me sick so I stopped for those 26 days.

 

 Then I started up again and had my blood work done at Northwestern and 
started on a trip out west.  My Cancer Doctor called me while driving and 
said," David your blood work showed that their are cancer cells back in your 
blood".  I told him remember I quit for 26 days and he replied that's right I 
forgot, did you start Gleevec again I told him yes and he said " well if it 
worked before it will work again and hung up and I never heard from again.  I 
later received a letter from him that he moved on to a different Hosp. in New 
York, NY. and that was the end of that.

 

So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to 
get my blood work see my new Doctor pick up my drugs and be on my way home.  
But instead I was told their no longer a study and you won't be getting the 
drug any longer.  That took my breath away.  Before I left they then told me 
that they changed their mind and would give me the drug and 7 month supply and 
would sent the rest later because they were short on Gleevec..

 

Last week I received a call telling me that for me to receive the drug that I 
would have to fly in every 3 months, that's not going to happen with the cost 
of flights, car rental, etc., not with my income at 78 years old.  They called 
me last week and they are suppose to have a meeting and let me know. 

 

When I started this study their were 8 of us out of 200 people nation way and 
that I would receive the drug STI571 for as long and I could tolerated it or 
stay alive.  Well that changed.  I am waiting for a phone call and I'm afraid 
it's not going to be good news,  So, my question is should I take a chance and 
stop the drug and get blood work in 3 months and see was happens with my blood 
count? I am a basket case waiting to see what happens.

 

If you have some answers please let met know.

 

Thank you,

 

David (greenie) Greenberg

South Fort Myers, Florida

 

 

 

In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, 
rien16...@gmail.com writes:

Hello!


I stopped taking Gleevec after 13 years. I had my checkups every month, but 
only in the first year. In the second year every two months and from now on 
every three months for the rest of my life.

It seems that everybody reacts in a different way. I myself had more bonecramps 
after having stopped than while taking Gleevec; but after the first year it 
gradually went better and now I have these cramps only a few times per year 
during the night. The swallen eyelids completely disappeared and unfortunately, 
my face became a lot thinner. Another side-effect: my hair was not grey anymore 
after havinig stopped, it is still dark, which was not the case before. After 
all I am glad that I took the decision, the problems of the first year will 
disappear, so I strongly advise you to do like I did.

Feel free to contact me for 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 8 updates in 1 topic

['Susan Zimmerman' via CMLHope]

Great great GREAT word, Greenie!!!

18's,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Wednesday, May 31, 2017 Myvety2k via CMLHope <cmlhope@googlegroups.com> 
wrote:

Hi Susan, If I were to pick a  word it would have to be "LOVE" that's something 
that everyone needs.

 

greenie

 

In a message dated 5/31/2017 12:07:37 A.M. Eastern Daylight Time, 
cmlhope@googlegroups.com writes:

Hi Marty and Jean,

I am glad your word is "blessed", Jean. Sorry I forgot to mention that in the 
last email. I often use that word, too!  We really are all blessed every day. I 
belong to a couple of other groups that are not nearly so positive. I try to 
encourage!

Marty, your word is "watch". With the description about reminding you of waking 
up every day, that is perfect!!!

Richard, I wonder if one word could be a motivational word that has personal 
meaning for you throughout the remainder of the year. To think of it often and 
be encouraged by it! What is your word?

I think we heard from Greenie, too. What's your word for the year?

Mine was picked in January. It is "DELIGHTED", and I wear it imprinted on a 
bracelet around my wrist.  It reminds me to be delighted with life, as there 
are so many good and great things along the journey.

How bout all those others out there who haven't picked a word that will always 
get you closer to your purpose?

Just watched The Fugitives as a comedy on netflix. Nick Nolte and Martin Short 
w James Earl Jones took my mind off my pain. I recommend it.

Thanks for letting me share. Hope your holiday was great and the wind is always 
at your back! Also that your pain is minimal and energy is abounding! 

18's,

Susan Zimmerman
Xoxoxo
Praying for you.



On Monday, May 29, 2017 'Jeanie' via CMLHope <cmlhope@googlegroups.com> wrote:

Hi Marty.  

Glad you are good.  The watch sounds wonderful!

Happy Memorial Day to all. 

Yes you are special and we are all a special 

Group of cml Warriors. 

I read this recently and it touched me.  

I don't even know if I will wake up tomorrow. 

I do know if my pain is managed I will sleep 

Well.  

I Need to keep myself in the here and now. 

So happiness to all and give us a line now and then.  

My Motto: 

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Apr 21, 2017, at 11:15 AM, Marty Gartenberg <wa2...@gmail.com> wrote:

Hi Susan, 


Very good on your necklace reminding you of your health and happiness of 
whatever you want it to remind you of. Yes, i think that would be a good idea 
and everyone could take part in.


Now saying that, i would like you to hear what my choice is... I needed a new 
watch and when Shelly (my wife of 41 years) went on a cruise with me several 
weeks ago because it was right on our anniversary. 


We went to St Thomas and I bought her some very nice jewelry and she asked me 
what i also wanted. So not being a vain person i mentioned that it is okay i 
don't really need anything. 


But in my mind i did want a special watch that no one carried in St Thomas but 
i knew it was available in the U.S. It is a watch that looks like a bracelet 
with a black polished stainless band but you can't tell that it is a watch 
until you push a little button on it's side and then it's led's light up. Push 
once for the time, twice for date and month and three times for seconds. In 
fact i just purchased a second one in polished silver stainless.


And do you know why i did it? Well they both remind my that time keeps going on 
and i am still alive every time that i push that little button on it's side. 


Now, am i unusual? Perhaps, but it is the thing that makes me really happy to 
know that is the reason that keeps me going... Unless of course the battery 
goes bad, and that is for what the second watch is for. 


18's,


Marty   


On Fri, Apr 21, 2017 at 9:51 AM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

I am still here, too. I'm on fb more than email. All is well, waiting for my 
bcr/abl test results. 

Praying for all you wonderful people. Enjoy each day. I wear a bracelet most 
days that has "Delighted" imprinted on it. That reminds me to be delighted in 
God every day of my life. What is your chosen word for the year that will 
remind you to be positive at all times? Would love to hear the responses.

Hang in there,

Susan F. Zimmerman

On Friday, April 21, 2017 'LadyRx' via CMLHope <cmlhope@googlegroups.com> wrote:

I'm still here, too! I was wondering where everyone went! Hopefully, everyone 
is healthy and just taking a break! Greenie, in case you are taking Ibuprofen 
(for arthritis and pain) you should let your doctor know. He or she might want 
you to 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 8 updates in 1 topic

['Susan Zimmerman' via CMLHope]

Hi Marty and Jean,

I am glad your word is "blessed", Jean. Sorry I forgot to mention that in the 
last email. I often use that word, too!  We really are all blessed every day. I 
belong to a couple of other groups that are not nearly so positive. I try to 
encourage!

Marty, your word is "watch". With the description about reminding you of waking 
up every day, that is perfect!!!

Richard, I wonder if one word could be a motivational word that has personal 
meaning for you throughout the remainder of the year. To think of it often and 
be encouraged by it! What is your word?

I think we heard from Greenie, too. What's your word for the year?

Mine was picked in January. It is "DELIGHTED", and I wear it imprinted on a 
bracelet around my wrist.  It reminds me to be delighted with life, as there 
are so many good and great things along the journey.

How bout all those others out there who haven't picked a word that will always 
get you closer to your purpose?

Just watched The Fugitives as a comedy on netflix. Nick Nolte and Martin Short 
w James Earl Jones took my mind off my pain. I recommend it.

Thanks for letting me share. Hope your holiday was great and the wind is always 
at your back! Also that your pain is minimal and energy is abounding! 

18's,

Susan Zimmerman
Xoxoxo
Praying for you.

On Monday, May 29, 2017 'Jeanie' via CMLHope <cmlhope@googlegroups.com> wrote:

Hi Marty.  

Glad you are good.  The watch sounds wonderful!

Happy Memorial Day to all. 

Yes you are special and we are all a special 

Group of cml Warriors. 

I read this recently and it touched me.  

I don't even know if I will wake up tomorrow. 

I do know if my pain is managed I will sleep 

Well.  

I Need to keep myself in the here and now. 

So happiness to all and give us a line now and then.  

My Motto:

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Apr 21, 2017, at 11:15 AM, Marty Gartenberg <wa2...@gmail.com> wrote:

Hi Susan,


Very good on your necklace reminding you of your health and happiness of 
whatever you want it to remind you of. Yes, i think that would be a good idea 
and everyone could take part in.


Now saying that, i would like you to hear what my choice is... I needed a new 
watch and when Shelly (my wife of 41 years) went on a cruise with me several 
weeks ago because it was right on our anniversary. 


We went to St Thomas and I bought her some very nice jewelry and she asked me 
what i also wanted. So not being a vain person i mentioned that it is okay i 
don't really need anything. 


But in my mind i did want a special watch that no one carried in St Thomas but 
i knew it was available in the U.S. It is a watch that looks like a bracelet 
with a black polished stainless band but you can't tell that it is a watch 
until you push a little button on it's side and then it's led's light up. Push 
once for the time, twice for date and month and three times for seconds. In 
fact i just purchased a second one in polished silver stainless.


And do you know why i did it? Well they both remind my that time keeps going on 
and i am still alive every time that i push that little button on it's side. 


Now, am i unusual? Perhaps, but it is the thing that makes me really happy to 
know that is the reason that keeps me going... Unless of course the battery 
goes bad, and that is for what the second watch is for. 


18's,


Marty   


On Fri, Apr 21, 2017 at 9:51 AM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

I am still here, too. I'm on fb more than email. All is well, waiting for my 
bcr/abl test results. 

Praying for all you wonderful people. Enjoy each day. I wear a bracelet most 
days that has "Delighted" imprinted on it. That reminds me to be delighted in 
God every day of my life. What is your chosen word for the year that will 
remind you to be positive at all times? Would love to hear the responses.

Hang in there,

Susan F. Zimmerman

On Friday, April 21, 2017 'LadyRx' via CMLHope <cmlhope@googlegroups.com> wrote:

I'm still here, too! I was wondering where everyone went! Hopefully, everyone 
is healthy and just taking a break! Greenie, in case you are taking Ibuprofen 
(for arthritis and pain) you should let your doctor know. He or she might want 
you to discontinue it. It drastically lowers kidney function. 


Have a nice weekend, all!


18's 

Lee 


On Apr 21, 2017, at 6:13 AM, cmlhope@googlegroups.com wrote:

cmlhope@googlegroups.com Google Groups  

Topic digest 
View all topics 

Fun thing to do - 8 Updates 

Fun thing to do 

myvet...@aol.com: Apr 20 08:14AM -0400 

Hi Group, is anyone home. Their seems to no posts anymore? I noticed that 
my name is off Zavie's list and he gave me number 48 and it's gone. Hope 
all is well with everyone.

greenie

Re: [CMLHope] Digest for cml...@googlegroups.com - 8 updates in 1 topic

['Susan Zimmerman' via CMLHope]

Ah, Richard! I am getting reports of kidney not as healthy as it used to be, 
also. 

Sz

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Monday, May 29, 2017 'Jeanie' via CMLHope  wrote:

Hi Richard and good to hear from you and all. 

I get pcr every 3 months.    Very good reports 

So staying positive.  

Prayers to all. 

My Motto:

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Apr 21, 2017, at 11:52 PM, Richard H  wrote:

Yes.  I have had to discontinue all over the counter because of my starting of 
kidney problems.  Most of us long timers of these heavy duty medications are 
doing damage while we are taking them.  I took a heart med  for 20 years that 
was 2x the recommended dosage and Gleevec (15 years) has also contributed to 
the damage.  But I am doing the best I can for the shape I'm in.  All my 
various Dr.s are giving me great reports the last month.  Blood work is Great, 
Kidney's are staying about the same. I will be taking the the big blood test in 
the next week or two.  I am to get the results May 23.  

Spring has sprung, flowers blooming, nose dripping, and all is well.

Richard H.

On Friday, April 21, 2017 at 6:34:40 AM UTC-5, Lee wrote:

I'm still here, too! I was wondering where everyone went! Hopefully, everyone 
is healthy and just taking a break! Greenie, in case you are taking Ibuprofen 
(for arthritis and pain) you should let your doctor know. He or she might want 
you to discontinue it. It drastically lowers kidney function. 


Have a nice weekend, all!


18's 

Lee 


On Apr 21, 2017, at 6:13 AM, cml...@googlegroups.com wrote:

cmlhope@googlegroups.com Google Groups  

Topic digest 
View all topics 

Fun thing to do - 8 Updates 

Fun thing to do 

myve...@aol.com: Apr 20 08:14AM -0400 

Hi Group, is anyone home. Their seems to no posts anymore? I noticed that 
my name is off Zavie's list and he gave me number 48 and it's gone. Hope 
all is well with everyone.

greenie


In a message dated 2/7/2017 6:31:21 P.M. Eastern Standard Time, 
pksc...@gmail.com writes:
 
 
For 32 years. I commuted two hours each day in the Toronto traffic 
(exposure to benzine) and then sat in front of a computer terminal all day long 
(prolonged exposure to electromagnetic radiation).
Had I known then, what I know now, I would have chosen a healthier 
occupation.
Also, in my younger years, I used leaded gasoline to wash the grease off 
my hands after working on my beat up cars.
 
 
 
 
-- 
-- 
[CMLHope]
A support group of _http://cmlhope.com_ (http://cmlhope.com/) 
-
 
You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To post to this group, send email to cml...@googlegroups.com
To unsubscribe from this group, send email to 
cmlhope-u...@googlegroups.com
For more options, visit this group at 
http://groups.google.com/group/CMLHope
--- 
You received this message because you are subscribed to the Google Groups 
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To unsubscribe from this group and stop receiving emails from it, send an 
email to cmlhope+u...@googlegroups.com.
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Marty Gartenberg : Apr 20 09:02AM -0400 

Hi Greenie,
 
I'm still here, in fact i am always here. I think that everyone is not
posting because of the holidays and are busy at this time of the year.
 
So, how are you doing? I hope that you are doing well. Ever since my
accident i have been trying to recover but it is a very slow process. I
broke my neck in three places as well as my arm and shattered my elbow.
 
I was in a coma for many weeks and when I finally got up to find i had hole
in my neck connected to a respirator with my head in a sort of globe I
didn't know what happened to me. They told me that i had plates, screws,
nuts and bolts in both my neck and arm. Had to go to a nursing home and had
months of therapy.
 
But i am still still recovering. I gained a lot of being myself in these
past nine months.
 
I'm walking I'm talking I'm eating again and I am off of Dialysis and got a
kidney transplant and a prostate operation almost two and a half years ago
and being able to pee is very good. And the best part is that I can still
drive my wife at night. Even went on a cruise on March 26th, and our 41st
anniversary was on March 28th while we were on the cruise.
 
The way I look at things no matter what you go through, ain't life great!
You bet it is! Remember I'm still pushing those 18's.
 
18's,
 
Marty
myve...@aol.com: Apr 20 11:42AM -0400 

Wow, I didn't know about the accident. Well, I'm glad things are going 
better for you. I'm doing O. K. I'm at 41 on my GFR which is not great but 
the Doctor told 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 8 updates in 1 topic

['Susan Zimmerman' via CMLHope]

Hi Jeanie,
No, never had a blister-like sore since getting cml. I have a lot of things 
come up that are blood drop looking things...and that"s what they are. Doc has 
said they are caused by cml. Even have them inside my mouth. Those I call blood 
blisters, even tho they don't hurt and go away by themselves. The ones on my 
skin are not blisters, tho. No pain and go away on their own.

Hope this helps. Enjoy the holiday!

I've been going for physical therapy for back pain caused by scoliosis and 
arthritis. Sure hope it helps, as the pain is no fun at all...I think it will!

Gotta put brats on the grill
18's,

Susan Zimmerman
Xoxo to all




On Monday, May 29, 2017 'Jeanie' via CMLHope <cmlhope@googlegroups.com> wrote:

Blessed.    Pills and faith.  Glad you are doing good.  

Got a question for the group.  I had a blister like sore

Come up on my back and it doesn't want to heal. 

Treating it with bacatracin but it's still hanging 

In there. Anyone have this during their battle?

Good to hear from our group. 

Blessings. 





My Motto:

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Apr 21, 2017, at 9:51 AM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

I am still here, too. I'm on fb more than email. All is well, waiting for my 
bcr/abl test results. 

Praying for all you wonderful people. Enjoy each day. I wear a bracelet most 
days that has "Delighted" imprinted on it. That reminds me to be delighted in 
God every day of my life. What is your chosen word for the year that will 
remind you to be positive at all times? Would love to hear the responses.

Hang in there,

Susan F. Zimmerman



On Friday, April 21, 2017 'LadyRx' via CMLHope <cmlhope@googlegroups.com> wrote:

I'm still here, too! I was wondering where everyone went! Hopefully, everyone 
is healthy and just taking a break! Greenie, in case you are taking Ibuprofen 
(for arthritis and pain) you should let your doctor know. He or she might want 
you to discontinue it. It drastically lowers kidney function. 


Have a nice weekend, all!


18's 

Lee 


On Apr 21, 2017, at 6:13 AM, cmlhope@googlegroups.com wrote:

cmlhope@googlegroups.com Google Groups  

Topic digest 
View all topics 

Fun thing to do - 8 Updates 

Fun thing to do 

myvet...@aol.com: Apr 20 08:14AM -0400 

Hi Group, is anyone home. Their seems to no posts anymore? I noticed that 
my name is off Zavie's list and he gave me number 48 and it's gone. Hope 
all is well with everyone.

greenie


In a message dated 2/7/2017 6:31:21 P.M. Eastern Standard Time, 
pksch...@gmail.com writes:
 
 
For 32 years. I commuted two hours each day in the Toronto traffic 
(exposure to benzine) and then sat in front of a computer terminal all day long 
(prolonged exposure to electromagnetic radiation).
Had I known then, what I know now, I would have chosen a healthier 
occupation.
Also, in my younger years, I used leaded gasoline to wash the grease off 
my hands after working on my beat up cars.
 
 
 
 
-- 
-- 
[CMLHope]
A support group of _http://cmlhope.com_ (http://cmlhope.com/) 
-
 
You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to 
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at 
http://groups.google.com/group/CMLHope
--- 
You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an 
email to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
Marty Gartenberg <wa2...@gmail.com>: Apr 20 09:02AM -0400 

Hi Greenie,
 
I'm still here, in fact i am always here. I think that everyone is not
posting because of the holidays and are busy at this time of the year.
 
So, how are you doing? I hope that you are doing well. Ever since my
accident i have been trying to recover but it is a very slow process. I
broke my neck in three places as well as my arm and shattered my elbow.
 
I was in a coma for many weeks and when I finally got up to find i had hole
in my neck connected to a respirator with my head in a sort of globe I
didn't know what happened to me. They told me that i had plates, screws,
nuts and bolts in both my neck and arm. Had to go to a nursing home and had
months of therapy.
 
But i am still still recovering. I gained a lot of being myself in these
past nine months.
 
I'm walking I'm talking I'm eating again and I am off of Dialysis and got a
kidney transplant and a prostate operation almost two and a half years ago
and being able to pee is very good. And the best part is that

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 8 updates in 1 topic

['Susan Zimmerman' via CMLHope]

I am still here, too. I'm on fb more than email. All is well, waiting for my 
bcr/abl test results. 

Praying for all you wonderful people. Enjoy each day. I wear a bracelet most 
days that has "Delighted" imprinted on it. That reminds me to be delighted in 
God every day of my life. What is your chosen word for the year that will 
remind you to be positive at all times? Would love to hear the responses.

Hang in there,

Susan F. Zimmerman


On Friday, April 21, 2017 'LadyRx' via CMLHope  wrote:

I'm still here, too! I was wondering where everyone went! Hopefully, everyone 
is healthy and just taking a break! Greenie, in case you are taking Ibuprofen 
(for arthritis and pain) you should let your doctor know. He or she might want 
you to discontinue it. It drastically lowers kidney function. 


Have a nice weekend, all!


18's 

Lee 


On Apr 21, 2017, at 6:13 AM, cmlhope@googlegroups.com wrote:

cmlhope@googlegroups.com Google Groups  

Topic digest 
View all topics 

Fun thing to do - 8 Updates 

Fun thing to do 

myvet...@aol.com: Apr 20 08:14AM -0400 

Hi Group, is anyone home. Their seems to no posts anymore? I noticed that 
my name is off Zavie's list and he gave me number 48 and it's gone. Hope 
all is well with everyone.

greenie


In a message dated 2/7/2017 6:31:21 P.M. Eastern Standard Time, 
pksch...@gmail.com writes:
 
 
For 32 years. I commuted two hours each day in the Toronto traffic 
(exposure to benzine) and then sat in front of a computer terminal all day long 
(prolonged exposure to electromagnetic radiation).
Had I known then, what I know now, I would have chosen a healthier 
occupation.
Also, in my younger years, I used leaded gasoline to wash the grease off 
my hands after working on my beat up cars.
 
 
 
 
-- 
-- 
[CMLHope]
A support group of _http://cmlhope.com_ (http://cmlhope.com/) 
-
 
You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To post to this group, send email to CMLHope@googlegroups.com
To unsubscribe from this group, send email to 
cmlhope-unsubscr...@googlegroups.com
For more options, visit this group at 
http://groups.google.com/group/CMLHope
--- 
You received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an 
email to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.
Marty Gartenberg : Apr 20 09:02AM -0400 

Hi Greenie,
 
I'm still here, in fact i am always here. I think that everyone is not
posting because of the holidays and are busy at this time of the year.
 
So, how are you doing? I hope that you are doing well. Ever since my
accident i have been trying to recover but it is a very slow process. I
broke my neck in three places as well as my arm and shattered my elbow.
 
I was in a coma for many weeks and when I finally got up to find i had hole
in my neck connected to a respirator with my head in a sort of globe I
didn't know what happened to me. They told me that i had plates, screws,
nuts and bolts in both my neck and arm. Had to go to a nursing home and had
months of therapy.
 
But i am still still recovering. I gained a lot of being myself in these
past nine months.
 
I'm walking I'm talking I'm eating again and I am off of Dialysis and got a
kidney transplant and a prostate operation almost two and a half years ago
and being able to pee is very good. And the best part is that I can still
drive my wife at night. Even went on a cruise on March 26th, and our 41st
anniversary was on March 28th while we were on the cruise.
 
The way I look at things no matter what you go through, ain't life great!
You bet it is! Remember I'm still pushing those 18's.
 
18's,
 
Marty
myvet...@aol.com: Apr 20 11:42AM -0400 

Wow, I didn't know about the accident. Well, I'm glad things are going 
better for you. I'm doing O. K. I'm at 41 on my GFR which is not great but 
the Doctor told me to keep drinking a lot of water and I've increased that 
also. I have blood work in Chicago on the first of June, see the Doctor, 
etc. Check in with my late son's wife and kids and then catch the last plane 
out of Chicago to Fort Myers. It will be a long day but I'll be doing 
just find. Creatinine is at 1.6 dropped from 2.02 so that's another plus. 
PLEASE be careful and take care of yourself. We all need you to solve all of 
our problems. 

Cheers,

greenie


In a message dated 4/20/2017 9:02:51 A.M. Eastern Daylight Time, 
wa2...@gmail.com writes:
 
Hi Greenie, 
 
 
I'm still here, in fact i am always here. I think that everyone is not 
posting because of the holidays and are busy at this time of the year.
 
 
So, how are you doing? I hope that you are doing well. Ever since my 
accident i have been trying to recover but it is a very slow process. I broke 
my 
neck in three places as well as my arm and 

Re: [CMLHope] Fun thing to do

['Susan Zimmerman' via CMLHope]

I walked between 5 diesel buses for half an hour on a trip once, deciding which 
bus I should get on.  Have always wondered about the benzene in the diesel 
fuel.not good.  This was about a year before detection.


18's,

Susan F. Zimmerman



-Original Message-
From: ANGELYN ESDERS 
To: cmlhope 
Sent: Mon, Feb 6, 2017 8:08 pm
Subject: Re: [CMLHope] Fun thing to do



I was a smoker. How many of us were smokers?


One day at a supermarket I was in the direct line of fire when an old lady on a 
scooter hit a display of Javex. It splashed all over me.completely ruined 
my clothes...and I had to drive home on that VERY HOT summer day(two hr drive) 
in clothing soaked with Javex. Apparently it absorbs through the skin. I felt 
very ill the next day.   I have always wondered..


I was cleaning calcium deposits off of seashells using CLR. It worked very 
well. I did not wear gloves. I have always wondered.


Angie



  
 
 
  
 From: 'Jeanie' via CMLHope 
 To: cmlhope@googlegroups.com 
 Sent: Monday, February 6, 2017 6:08 PM
 Subject: [CMLHope] Fun thing to do
  
 

Let's all make s list of all the things we were doing when we got CML.  Things 
that we didn't normally do or that were done every day. Mine were:
Exposure to pesticides
Dental X-rays more than normal
Donating blood
Deep grief over loss of hubby
Thanks group.  

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 

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Re: [CMLHope] 39 years with cml

['Susan Zimmerman' via CMLHope]

Yippie Kayay, whoohoo, whoohoo, and I remember Zavie.  I've been fightin' this 
thing for 11 years myself.


and another Yippie Kayay!


18's,

Susan 



-Original Message-
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Fri, Feb 3, 2017 8:32 pm
Subject: Re: [CMLHope] 39 years with cml





Susan,


Sounds like you dialed 911 and that is what you got back .911%. I would like to 
remind you of what our friend Zavie used to say when something went right 
especially when that person got a good pcr/abl.

He would shout out Yippi Yahooy and repeat it a zillion times. He was some type 
of guy and i really do miss him and his wife Ida...


So Susan now it is your time... 


18's,


Marty



On Fri, Feb 3, 2017 at 6:54 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thanks, good to hear from you, Skip!!!  Keep on keepin on...


Great news everybody!  Just got my numbers back from last bcr/abl.  In the 
third month of taking bosulif at 100 mg every OTHER day, it is down to .911%.  
YAY, HAPPY DANCE, HOORAY, HALLELUHIAH, THANK GOD, WHOOPP, WHOOP WHOOP!!!


I am praying for all of you to be well and enjoy every day.  smooches,
18's,

Susan F. Zimmerman



-Original Message-
From: skipd <skip...@gmail.com>
To: CMLHope <cmlhope@googlegroups.com>
Sent: Wed, Feb 1, 2017 7:04 pm
Subject: [CMLHope] 39 years with cml



/just want to say hi to all you cml'ers and to let you know I am still on the 
green side  was talking to Marty he told me to get on





In case you do not know me here is a place you can  see but its not finished 
still have about 10 years still to enter


http://easyskipcacom.coffeecup.com/index.html


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Re: [CMLHope] 39 years with cml

['Susan Zimmerman' via CMLHope]

Thanks, good to hear from you, Skip!!!  Keep on keepin on...


Great news everybody!  Just got my numbers back from last bcr/abl.  In the 
third month of taking bosulif at 100 mg every OTHER day, it is down to .911%.  
YAY, HAPPY DANCE, HOORAY, HALLELUHIAH, THANK GOD, WHOOPP, WHOOP WHOOP!!!


I am praying for all of you to be well and enjoy every day.  smooches,
18's,

Susan F. Zimmerman



-Original Message-
From: skipd 
To: CMLHope 
Sent: Wed, Feb 1, 2017 7:04 pm
Subject: [CMLHope] 39 years with cml



/just want to say hi to all you cml'ers and to let you know I am still on the 
green side  was talking to Marty he told me to get on





In case you do not know me here is a place you can  see but its not finished 
still have about 10 years still to enter


http://easyskipcacom.coffeecup.com/index.html


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Re: [CMLHope] Disability and retirement

['Susan Zimmerman' via CMLHope]

Dear Lee,


You cannot collect disability and social security together.  You get one or the 
other.  Yes, he can apply now for disability and they will consider his medical 
condition and let you know.  I got it at 62 because I went to apply for Soc. 
Sec. and asked about disability.  I did have other things wrong with me that as 
a lump sum got me the disability without a lawyer or any extra help.  I had 
strokes, diabetes, and the cml.  Good luck in getting it!  We went down to the 
SS office and applied in person with an appointment.


Many blessings,

Susan F. Zimmerman




-Original Message-
From: Myvety2k via CMLHope 
To: cmlhope 
Sent: Thu, Feb 2, 2017 6:18 pm
Subject: Re: [CMLHope] Disability and retirement



Yes, and I'm still getting to this day.
 
greenie
 

In a message dated 2/2/2017 3:52:34 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:
  
Hi Greenie
  
Did you still get your pension check?

My   Motto:   
Faith and Pills
  
With Love
  
18's
  
Dx 1/2004 CML Leukemia
  
Started Gleevec 2/2004
  
Started Tasigna 9/2009
  
Started Sprycel 11/2009
  
Started Ponatinib 1/2015
  
Doctor Balducci Moffitt Cancer Center 
  

On Feb 2, 2017, at 11:35 AM, Myvety2k via CMLHope    
wrote:


  


Hi Lee, I retired in 1995 at the age of 55.  I worked for a close friend of 
mine at his Ford Dealership until I found out the I had CML two weeks 
before Xmas, that was 1999.  My Cancer Doctor told my wife at that time to 
apply for SS and was approved within two weeks.  At that time I was getting 
a pension check from the company that I retired from.  By the way my Cancer 
Doctor wrote a letter to go along with my letter to SS.

 

Of course things may have changed by now I'm not sure but give it a try.

 

greenie

 

 


In a message dated 2/2/2017 8:09:15 A.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:

Good   morning to all. My husband, who was diagnosed with CML eight years 
ago, is   newly retired. He won't be eligible for social security for 
another 3   years. Does anyone know if it is possible to collect disability 
during   retirement? Also, when he is able to collect social security, will 
he be   able to collect both? I would love your feedback and advice.   

Blessings and 18's to you all! 
Lee Erstein


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Re: [CMLHope] My latest Blood test.

['Susan Zimmerman' via CMLHope]

Hey Richard,


Sorry to hear about your low counts.  What a bummer!!!  Glad your doc is going 
along with you, like mine does. 


I haven't been keeping up well with my emails.  Every 3 days I delete about 500 
if I don't go every day to computer, which I do not.
Guess we both enjoyed our years without any medicine as a wonderful time in our 
lives.  I am now back on bosulif only my doc is going along with me taking one 
every other day.  I am so prone to strokes with the tki's that I felt I could 
stave off the build-up this way.  I had another stroke in Dec. 2015 so went off 
bosulif for 10 months. Now the first two months' tests (bcr/abl) showed 8.88 
and next month 3.06!
We were thrilled.


Love and pray for all you guys, 18's,

Susan F. Zimmerman





-Original Message-
From: Richard H 
To: CMLHope 
Sent: Sun, Jan 29, 2017 11:58 pm
Subject: Re: [CMLHope] My latest Blood test.



Yes these are the 2 main drugs.  Since I get mine from the VA and it is labeled 
Procrit/Epitien.  That is better than having to try and keep up with 
transfusions every 3 weeks and spend 6 hours plugged into the wall.

We saw the SUN most of the day for the first time in about 2 weeks.  This new 
weather pattern we have is like living wintertime in Washington state.

18's

Richard H. 

On Sunday, January 29, 2017 at 8:06:37 AM UTC-6, wa2yyx wrote:



Good morning Richard,


And your right, it is another morning and you and i are on the right side of 
the bed sheets.


Sorry to hear about your problem concerning your . Boy do i know how you feel 
because when i had my dialysis my Hemoglobin was so low that at times i 
couldn't even get out of bed. 


I was given Procrit or Epogen and it brought my Hemoglobin up but it took 
several days. By any chance are on any of thees drugs?


18's,


Marty  



On Sun, Jan 29, 2017 at 12:23 AM, Richard H  wrote:

My last blood test on Jan.17 came back stating my counts were so low they 
couldn't be reported.  I am still fighting low Hemoglobin counts but I have 
been in much better control than I was 3 years ago.I am still taking a CBC 
weekly because when my Hemoglobin decides to drop it plunges down 1 to 2 points 
in that weekly period.  So my preference is being observed instead of ONC's 
request of bi-weekly testing.  The longest period without a shot is about 4 
weeks and then it takes about 3 weeks to get it back up.  But that is life in 
my CML world so not complaining just commenting.

I awake in the morning thankful for another day. Then I prey all my fellow 
CMLers are having good new day also.

18's

Richard  H.


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Re: [CMLHope] Got a brand new Hip!

['Susan Zimmerman' via CMLHope]

Dear Susie-Q,


So  much has gone on with you!  Nothing can replace your mom, and I'm so sorry 
for your loss.  


I am just reading this even though you posted a week ago.  I get at least 200 
emails a day so sometimes they don't get read quickly.  But I always keep my 
cml group's emails for later.  As you know I believe in the power of prayer, so 
will lift you up to the Father for complete healing in both hips.  My husband 
has the same thing but he is using a natural product from Youngevity to rebuild 
his cartilage and it seems to be working.  He has bad days, but is avoiding 
surgery with it.  I hope your other hip doesn't give you any trouble - EVER


18's and hugs,.




Susan Z




-Original Message-
From: 'Marcie Goodman' via CMLHope 
To: cmlhope 
Sent: Sun, Nov 27, 2016 9:30 pm
Subject: Re: [CMLHope] Got a brand new Hip!



Suzie, please accept my condolences on the loss of your beloved mother. I'm so 
sorry but I'm sure that your wonderful memories will be a comfort and blessing 
to you always. 


Marcie 

Sent from my iPhone

On Nov 27, 2016, at 8:17 PM, Suzieq  wrote:



Hello to my CML Survivors!


Hope everyone had a very nice Thanksgiving.  I know it's been a while since I 
posted anything,  but I haven't been on line very much for a few weeks.  I come 
today to let y'all know that I had to have a total hip replacement of my left 
hip which was done on October 20th and was in the hospital (St.Louis) for 5 
days till they moved me to a hospital closer to our home for almost 2 weeks of 
Rehab.  I have one more week of restrictions left and then I'm home-free! 
Yea!!!  This has been about the worst (I should say the longest) recovery from 
surgery that I have ever faced.  I am not a patient person,  but I have obeyed 
& not being doing the things I was told not to do.  The reason for the 
replacement,  it was bone on bone (the two weeks leading up to surgery were the 
most painful I have ever experienced).  I had a major case of Arthritis 
according to the Orth. Surgeon of which he cleaned out as best he could while 
in there.  He did say that I would probably have to have the other one replaced 
later on down the road (of which I thought to myself,  it will have to be a 
long time down the road as far as I am concerned, lol),  but it's not bothering 
me for now so we will leave it alone.  He was very surprised that I have such a 
case of Osteo Arthritis as my age (63).  Seems the left side has been the 
worse.  Not only was it in the hip,  but it's in the left Sacroiliac Joint just 
as bad.  The right side has a bit,  just not as bad.  He made me go off the 
Gleevec for 30 days starting 7 days prior to the operation.  That long wasn't 
mentioned in the beginning,  I thought it was going to only be 15 days,  but he 
said to stay off of it for the full 30 days.  I am hoping all will be well when 
I see my Hem/Onc on the 19th.sure hate to lose my "non-detected",  but even 
so,  shouldn't take too long before it's back to 0.  


Oh,  and one more thing..I had my surgery on Thursday and my Mom passed 
away Saturday night at 11:15 (Florida time).  Needless to say,  no way was I 
able to travel the 1025 miles (one way) to be with my oldest brother and for 
the funeral.  I still grieve for her.  I am now very thankful that I had last 
spring with her when I went down to care for her once she came out of the 
hospital.  Got to spend 2 & 1/2 months as her total caregiver until we placed 
her back in the rehab/residential home where she wanted to go.  She knew I was 
going in for surgery and she knew it went well.  I told my husband I feel she 
planned her death perfectly cause she knew I would put off the surgery no 
matter how bad my pain was and come down there to be with her. She never wanted 
to be a "burden" to us and she always was worrying about me with the CML even 
though I told her that I was just fine,  that it was not a problem, that the 
Gleevec was doing it's job and all was well.  Since I wasn't able to be there,  
I told my brother that maybe we could maybe have a special Memorial Service for 
her back in the hometown in Kentucky where most of the family still lives later 
sometime after the 1st of the year.  Everyone seemed to be okay with that.  


Okay,  I hope you all have a very Merry Christmas & the Happiest New Year! 


Suzieq 

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RE: [CMLHope] About John Hopkins Cancer Update

['Susan Zimmerman' via CMLHope]

I still know that every bit of Marty's article is true re. avoiding 
carcinogens. Snopes is not always right. Any naturopathic doc would agree w the 
article.

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Friday, June 10, 2016 'Susan Rosenthal' via CMLHope 
 wrote:
Before sending anything to anyone, I always check this site first:

http://www.snopes.com/medical/disease/cancerupdate.asp

Have a wonderful day

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Re: [CMLHope] Check out MyNMs MyChart - Test Details

['Susan Zimmerman' via CMLHope]

Great great news 

Blessings and 18's,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Tuesday, June 7, 2016 Myvety2k via CMLHope  wrote:

Well Hi again,  I think I got it right this time so I will try again.  Page 5 I 
know about the test results just passing it on.

 

greenie

 

In a message dated 6/7/2016 10:12:34 A.M. Eastern Daylight Time, 
cmlhope@googlegroups.com writes:

O. K. that didn't work I will have to scan the reports to my computer then pass 
them on.   Sorry about that.

 

greenie

 

In a message dated 6/7/2016 10:04:02 A.M. Eastern Daylight Time, 
cmlhope@googlegroups.com writes:

MyNMs MyChart - Test Details 

 

Hi Group, I received some results from Northwestern this morning from years 
passed and I have to clue what they mean.  Marty or anyone please clue me in.

 

Thank you,

 

greenie

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Re: [CMLHope] Pictures

['Susan Zimmerman' via CMLHope]

I'm glad you got to see our doc, Greenie! Sorry it was a hard day... I bet 
today was better! How is all going?

We are enjoying this spring seasonup here in no. Indiana. I"m struggling 
without medicine. Got a bad eye bleed Sunday and a rash. Then yesterday fell 
off a top step of a stepstool and am bruised and sore. So very thankful nothing 
broken. Had all kinds of suggestions on fb re. bubble wrap, etc. to keep me 
safe. A month ago my bcr/abl revealed 3.56. Been off med. since Dec. 28th. Took 
another blood test today. 

I have much to be thankful for and just laying kinda low for awhile. Dr. Altman 
is keeping in touch w me. I'm doing blood tests locally for awhile. 
Blessings and 18's,
Susan 

On Thursday, June 2, 2016 Myvety2k via CMLHope  wrote:

Hi Group,  Well I awoke at 3 a.m. to get ready to fly to Chicago to see Dr. 
Altman, get my blood work, etc. and fly home.  But when I got to the airport 2 
hours early their was a line of about 100 young people that were on their way 
to Washington D. C.. My plane came in 35 min. late after getting fuel we had 
mechanical problems and that put us behind.  My appointment was at 10:15 and we 
arrived at 8:55 a.m. and my son picked me up and got me their on time.

 

Saw the Doctor, got my blood work which came back O. K. and Derek picked me up 
and took me to the airport.  Another 2 1/2 wait to get through.  Got ready to 
take off put their was a head count problem. Let's say their was 100 people 
aboard and the paper work showed 99. We had to start over again and called each 
and every one to find out the problem and the computer didn't read the persons 
ticket right, so took of 55 min. late.  Was up at 40 thousand feet and ran in 
to clouds and turbulence so we dropped down to 10 thousand feet and a much 
smoother ride.  I used to be a private pilot and I can tell you it was like 
riding on a roller coaster.

 

Well anyway he made up time on the way their but we ran into thunderstorms and 
lightning so we circled and circled and circled until we had to fly up to 
Tampa, FL. to refuel.  More time lost, took off again for Fort Myers which took 
only 26 min. it's a 2 1/2 hour drive.  Landed many hours late and instead of 
having my wife pick me up I took a taxi home for $36.00.  They wouldn't let us 
text or call while we were on the plane so my wife was worried sick.  She 
called Southwest to find out what happened and gave them a piece of her mind. 

 

So life goes on and I home tired but as the song goes on (I will survive).

 

Was a fun day,

 

greenie

 

In a message dated 6/1/2016 1:34:18 P.M. Eastern Daylight Time, 
argo9...@gmail.com writes:

HI KATHY,

i'm Christina,  from Greece. I'm 52 years old and i have been diagnosed in 2009 
when i was 45 years old. I  started with Gleevec 400 mg every day for 5 1/2 
years, i was in recession for 3 years so  in 2015 my doctors said that i could 
try to  stop the medicine. But after 3 months  my bcr-able  was 2,3. So i 
started tasigna 600 mg (300 mg in the morning and 300 mg in the evening). One 
year after i'm in recession again (the latest 6 months i'm negative, bcr-able 
can not be detected). I'm so happy for it and i feel great!!! But after 9 
months with tasigna  i get high LDL(175)  and cholesterole (280) and  a few 
pimples sebum ιn my arms. For the pimples i used an intensive exfoliating creme 
with olive.For the LDL i take care of my diet (only mediterranean diet, not 
junk food at all). My doctors told me that i don' t need a medicine for the 
cholisterole yet. Only swimming in the sea. walking, good diet, good psychology 
and faith something like an holistic approach (like HIPPOCRATES said) to this 
problem. For me the Gleevec effects where terrible (diarrhea, vomiting, blood 
-storms in my eyes ). I prefer Tasigna and i take my risks. Maybe it would be a 
good idea to talk once again with your doctors (dermatologist,hematologistic, 
gynecologist).

best wishes 

thinking of you

C.


 


2016-05-31 4:27 GMT+03:00 kathy walls :

I'm still a newbie was diagnosed 1/9 and started tasigna on the 23rd, oh yeah 
I'm lucky enough to have the ph chromosome to boot.  I stopped tasigna in 
December because of horrible side effects, I got an awful rash and cysts. 
Switched to Gleevev and I feel much better, but did dr said at this level i 
will never see remission.  I'm ok with that.  Quality of like is much important 
to me than quantity.  I'm 56 I have  a 4 yr old grandson and  3 month old 
grandson. I'd much rather a little pep in my step than being in remission but 
to sick to anything!  Just my thoughts. We all are fighting the same fight each 
in our way

BEST TO ALL. -18's

Kate


Sent from my iPhone


On May 30, 2016, at 8:55 PM, Marty Gartenberg  wrote:

Yes Jeanie,


we are still all kicking! Jeanie what happened in the past according to your 
oncologist about you being to old should remain in the past and I will 

Re: [CMLHope] Prayers are offered.

['Susan Zimmerman' via CMLHope]

Wow Beth,
Sounds very interesting, glad you could go!
What is CPK?  Thinking of you.


Love and 18's,

Susan F. Zimmerman





-Original Message-
From: bkbarney via CMLHope 
To: cmlhope 
Sent: Tue, May 3, 2016 2:44 pm
Subject: Re: [CMLHope] Prayers are offered.


CPK doubled in the last two months to 700. Monoclonal protein they had been 
tracking for the last two years is up...BCR abl will hopefully be a good 
result... Then we plan from there...


Marty, I just went to the national Bone Marrow Transplant Survivors conference 
this weekend...I went as the caregiver and helper to my best friend who is now 
2.5 years out and struggling with graft vs host. I went to 9 seminars and met 
lots of people ..wow...so humbling, inspiring, overwhelming...and I thought of 
you.all those years agobefore all these advances have been made.hope 
you are feeling better...I know you will stay positive, and strong..I am 
thinking of you..




and Jeanie,  the session I went to on faith, spirituality and illness was 
right up your alley...you and many other's here..


also did a nice piece on yoga and meditation, complementary medicines, 
nutritionpain management, sleep issues...etc..etc..really well done 
weekend. 



and the importance of not getting lost in our heads, in fear, and 
ruminating...but instead, staying anchored, and reaching out so we are not in 
isolation
Thinking of all of you..


Love, Beth
18's..



-Original Message-
From: 'Icandoallttc' via CMLHope 
To: cmlhope 
Sent: Tue, May 3, 2016 12:12 pm
Subject: Re: [CMLHope] Prayers are offered.



What are the changes in your blood work if u don't mind sharing Beth?I have 
several things out of range but just slightly. 


My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center


On May 2, 2016, at 6:14 PM, 'Marcie Goodman' via CMLHope 
 wrote:



Beth, yes, a long time since you've posted. Please let us know your results. 
Sending prayers and hugs. 


Marcie

Sent from my iPhone

On May 2, 2016, at 2:05 PM, bkbarney via CMLHope  
wrote:



Thank you Richard for your kind words and prayers. They are always so 
appreciated. You are such a stable presence here. I so appreciate your thoughts 
and help. I hope everyone is navigating the best they can. Know that I think of 
all of you often...haven't written much because of my own journey...I am sorry 
if I missed out on communicating with those who are struggling recently. All of 
you are in my heart.


I do BCR abl next week..so please keep your fingers crossed. I have more 
anxiety about this one for some reason... My basic blood work shows some 
changes that are in the wrong direction...hopefully things are stable in the 
CML realm.


Will keep you posted..


Much love and 18's, Beth


-Original Message-
From: Richard H 
To: CMLHope 
Sent: Sun, May 1, 2016 11:11 pm
Subject: Re: [CMLHope] Prayers are offered.



Thank you.
Richard

On Saturday, April 30, 2016 at 11:29:32 AM UTC-5, wa2yyx wrote:

Just one thing to say Richard H. Your like the rock of Gibraltar. 


18's to you!


Marty



On Sat, Apr 30, 2016 at 12:07 AM, Richard H  wrote:

I am sorry to hear about all the problems everyone is reporting.  I am lifting 
prayers for healing to those with problems and for the caregivers prayers of 
understanding and strength to help them be the support they want and need to be.

I am just coasting with all my problems and trying to deal with lower strength 
because of them.  I have changed a couple of Doctors because they started 
practicing too far away.  They have reviewed my records and have updated me on 
things that I don't remember being told about and clarified some things that 
were given as side inference.  I am also adding a new heart med and will be 
monitored to see if I need to change others on my list.

18's

Richard H.


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Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so

['Susan Zimmerman' via CMLHope]

Good one, Marty!!!  You personify warmth, love, caring and a "momma" attitude 
to us all.  Thanks for the positives you bring!




Susan F. Zimmerman




-Original Message-
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, May 14, 2016 12:59 pm
Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots 
so














Well, do I actually personify class? I don't know, but maybe this will bring up 
your day. Maybe this funny music video will?


I hope that everyone's day is at it's pinnacle just, like a rock on top of a 
mountain because everyone is in fact a rock for what you have been going 
through, and you will never break!


18's


Marty






https://www.youtube.com/embed/gKpFhPdyQLM?rel=0













On Fri, May 13, 2016 at 9:57 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

My best to Beth and Jeanie and Marty as you battle onward and upward to be 
victorious. The victory is more in the attitude, and all of you personify it.
I got numbers back for bcr/abl test. It's been 4 mos., almost 5 since my stroke 
and getting off bosulif.  It was 3.56. Ok but steadily increasing. Very 
exhausted all the time w profuse sweating anytime I do anythingbut very 
glad to be alive with a very helpful husband.
You guys take care and enjoy the summer...it's coming!
Love you all and 18's,
Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11


On Thursday, May 12, 2016 bkbarney via CMLHope <cmlhope@googlegroups.com> wrote:

Glad you are feeling better Jeanie. Thinking of you...Beth








-Original Message-

From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, May 12, 2016 6:14 am
Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots 
so



Hi Jeanie and Beth,


Hey both of you seem to be raining down on us with your love and 
thoughtfulness. 


I have been a member of many groups but have never seen such compassion for 
anyone in this group and that means everyone! This result of having such a 
miserable time with what you had can not be a virus but rather a bacterial 
infection because the antibiotics are doing their job. 


Now make sure that you start using that Spirometer that I mentioned because you 
will see the congestion that is in your lungs will start subsiding very soon.
It would always work for me. 


Love, and as usual 18's,


Marty


On Wed, May 11, 2016 at 6:54 PM, 'Icandoallttc' via CMLHope 
<cmlhope@googlegroups.com> wrote:


Hi Beth and thank you so much for your love and concern. II am taking 
antibiotics and this is my sixth day. My throat has cleared up but I have a 
deep congestive cough. I am getting better. Each day I feel a little stronger. 
I think there is a virus going around that no one has identified yet. Anyway 
have a wonderful weekand thanks again. This group has really boosted my morale 
Greatly. Love you





On May 11, 2016, at 5:26 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
wrote:



Jeanie, thinking of you and hoping you feel better soon. I agree with others 
here, please act swiftly and see your doc. If you do need antibiotics you can 
get on them sooner verses later...it seems like once something gets through our 
immune systems, it's harder to recover because of the meds...you take good care 
and keep us posted. 


Love, Beth



-Original Message-
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, May 10, 2016 8:41 pm
Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots 
so



Hi Jeannie,


Sorry to hear this. You like I am immunocomprimised and that is probably why 
your flu like symptoms are persisting.


As far as antibiotics go if in fact you are suffering from a viral infection 
then antibiotics are probably useless however if your suffering from a 
bacterial infection then antibiotics will usually work, but I would suggest 
that you run it by your doctor. He or she will probably take a culture to see 
exactly what is going on and will know what to treat you with.


By the way sometimes it takes more then a few days to grow the culture so it 
will probably be a good idea to act on it ASAP.


Do you know what a Spirometer is? Read below, and believe me it really works. 
It will help keep your lungs clear. I use it anytime that my lungs are having 
any problems.


I hope that you start feeling better.


18's,


Marty




How to use an Incentive Spirometer


Sit up and hold the incentive spirometer.

Place the mouthpiece of the incentive spirometer in your mouth. Make sure you 
make a good seal over the mouthpiece with your lips.
Breathe out (exhale) normally.
Breathe in (inhale) SLOWLY.

A piece in the incentive spirometer will rise as you breathe in.

Try

Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so

['Susan Zimmerman' via CMLHope]

You personify class, too, Marty.  Thanks so much!




Susan F. Zimmerman
"Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you."  Hab. 
1:5



-Original Message-
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, May 14, 2016 10:00 am
Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots 
so



Wow, Susan it's nice to be able to meet up with such a classy lady such as you. 
I love the word  personify. A red rose for you! 


18's,


Marty



On Fri, May 13, 2016 at 9:57 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

My best to Beth and Jeanie and Marty as you battle onward and upward to be 
victorious. The victory is more in the attitude, and all of you personify it.
I got numbers back for bcr/abl test. It's been 4 mos., almost 5 since my stroke 
and getting off bosulif.  It was 3.56. Ok but steadily increasing. Very 
exhausted all the time w profuse sweating anytime I do anythingbut very 
glad to be alive with a very helpful husband.
You guys take care and enjoy the summer...it's coming!
Love you all and 18's,
Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11


On Thursday, May 12, 2016 bkbarney via CMLHope <cmlhope@googlegroups.com> wrote:

Glad you are feeling better Jeanie. Thinking of you...Beth








-Original Message-

From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, May 12, 2016 6:14 am
Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots 
so



Hi Jeanie and Beth,


Hey both of you seem to be raining down on us with your love and 
thoughtfulness. 


I have been a member of many groups but have never seen such compassion for 
anyone in this group and that means everyone! This result of having such a 
miserable time with what you had can not be a virus but rather a bacterial 
infection because the antibiotics are doing their job. 


Now make sure that you start using that Spirometer that I mentioned because you 
will see the congestion that is in your lungs will start subsiding very soon.
It would always work for me. 


Love, and as usual 18's,


Marty


On Wed, May 11, 2016 at 6:54 PM, 'Icandoallttc' via CMLHope 
<cmlhope@googlegroups.com> wrote:


Hi Beth and thank you so much for your love and concern. II am taking 
antibiotics and this is my sixth day. My throat has cleared up but I have a 
deep congestive cough. I am getting better. Each day I feel a little stronger. 
I think there is a virus going around that no one has identified yet. Anyway 
have a wonderful weekand thanks again. This group has really boosted my morale 
Greatly. Love you





On May 11, 2016, at 5:26 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
wrote:



Jeanie, thinking of you and hoping you feel better soon. I agree with others 
here, please act swiftly and see your doc. If you do need antibiotics you can 
get on them sooner verses later...it seems like once something gets through our 
immune systems, it's harder to recover because of the meds...you take good care 
and keep us posted. 


Love, Beth



-Original Message-
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, May 10, 2016 8:41 pm
Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots 
so



Hi Jeannie,


Sorry to hear this. You like I am immunocomprimised and that is probably why 
your flu like symptoms are persisting.


As far as antibiotics go if in fact you are suffering from a viral infection 
then antibiotics are probably useless however if your suffering from a 
bacterial infection then antibiotics will usually work, but I would suggest 
that you run it by your doctor. He or she will probably take a culture to see 
exactly what is going on and will know what to treat you with.


By the way sometimes it takes more then a few days to grow the culture so it 
will probably be a good idea to act on it ASAP.


Do you know what a Spirometer is? Read below, and believe me it really works. 
It will help keep your lungs clear. I use it anytime that my lungs are having 
any problems.


I hope that you start feeling better.


18's,


Marty




How to use an Incentive Spirometer


Sit up and hold the incentive spirometer.

Place the mouthpiece of the incentive spirometer in your mouth. Make sure you 
make a good seal over the mouthpiece with your lips.
Breathe out (exhale) normally.
Breathe in (inhale) SLOWLY.

A piece in the incentive spirometer will rise as you breathe in.

Try to get this piece to rise as high as you can.
Usually, there is a marker placed by your doctor that tells you how big of a 
breath you should take.

A smaller piece in the i

Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots so

['Susan Zimmerman' via CMLHope]

My best to Beth and Jeanie and Marty as you battle onward and upward to be 
victorious. The victory is more in the attitude, and all of you personify it.

I got numbers back for bcr/abl test. It's been 4 mos., almost 5 since my stroke 
and getting off bosulif.  It was 3.56. Ok but steadily increasing. Very 
exhausted all the time w profuse sweating anytime I do anythingbut very 
glad to be alive with a very helpful husband.

You guys take care and enjoy the summer...it's coming!

Love you all and 18's,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Thursday, May 12, 2016 bkbarney via CMLHope  wrote:

Glad you are feeling better Jeanie. Thinking of you...Beth




-Original Message-

From: Marty Gartenberg 
To: cmlhope 
Sent: Thu, May 12, 2016 6:14 am
Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots 
so

Hi Jeanie and Beth,


Hey both of you seem to be raining down on us with your love and 
thoughtfulness. 


I have been a member of many groups but have never seen such compassion for 
anyone in this group and that means everyone! This result of having such a 
miserable time with what you had can not be a virus but rather a bacterial 
infection because the antibiotics are doing their job. 


Now make sure that you start using that Spirometer that I mentioned because you 
will see the congestion that is in your lungs will start subsiding very soon.

It would always work for me. 


Love, and as usual 18's,


Marty


On Wed, May 11, 2016 at 6:54 PM, 'Icandoallttc' via CMLHope 
 wrote:

Hi Beth and thank you so much for your love and concern. II am taking 
antibiotics and this is my sixth day. My throat has cleared up but I have a 
deep congestive cough. I am getting better. Each day I feel a little stronger. 
I think there is a virus going around that no one has identified yet. Anyway 
have a wonderful weekand thanks again. This group has really boosted my morale 
Greatly. Love you



On May 11, 2016, at 5:26 PM, bkbarney via CMLHope  
wrote:

Jeanie, thinking of you and hoping you feel better soon. I agree with others 
here, please act swiftly and see your doc. If you do need antibiotics you can 
get on them sooner verses later...it seems like once something gets through our 
immune systems, it's harder to recover because of the meds...you take good care 
and keep us posted.  


Love, Beth


-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Tue, May 10, 2016 8:41 pm
Subject: Re: [CMLHope] Really sick with sore throat and flu. I had my flu shots 
so

Hi Jeannie,


Sorry to hear this. You like I am immunocomprimised and that is probably why 
your flu like symptoms are persisting.


As far as antibiotics go if in fact you are suffering from a viral infection 
then antibiotics are probably useless however if your suffering from a 
bacterial infection then antibiotics will usually work, but I would suggest 
that you run it by your doctor. He or she will probably take a culture to see 
exactly what is going on and will know what to treat you with.


By the way sometimes it takes more then a few days to grow the culture so it 
will probably be a good idea to act on it ASAP.


Do you know what a Spirometer is? Read below, and believe me it really works. 
It will help keep your lungs clear. I use it anytime that my lungs are having 
any problems.


I hope that you start feeling better.


18's,


Marty


How to use an Incentive Spirometer

Sit up and hold the incentive spirometer.

Place the mouthpiece of the incentive spirometer in your mouth. Make sure you 
make a good seal over the mouthpiece with your lips.Breathe out (exhale) 
normally.Breathe in (inhale) SLOWLY. 

A piece in the incentive spirometer will rise as you breathe in.

Try to get this piece to rise as high as you can.Usually, there is a marker 
placed by your doctor that tells you how big of a breath you should take. 

A smaller piece in the incentive spirometer looks like a ball or disc.

Your goal should be to make sure this ball stays in the middle of the chamber 
while you breathe in.If you breathe in too fast, the ball will shoot to the 
top.If you breathe in too slowly, the ball will stay at the bottom. 

Hold your breath for 3 to 5 seconds. Then slowly exhale.

Take 10 to 15 breaths with your spirometer every 1 to 2 hours, or as often as 
instructed by your nurse or doctor.







On Tue, May 10, 2016 at 11:39 AM, 'Icandoallttc' via CMLHope 
 wrote:

Hello all
I pray that everyone is good today and just wanted to let you know I am really 
sick with a sore throat and flu. I had my flu shots and never get the flu after 
receiving them. I was wondering if any of you have taken antibiotics while sick 
and on 

Re: [CMLHope] Re: Zavie's Zero Club.xls

['Susan Zimmerman' via CMLHope]

Oh my goodness!!! Marcie I so wish we were closer so I could be with you. Know 
that you are so dear to me and so consequently your husband is also. Please let 
me know if there's anything I can do to help. Do you have a strong support 
system of friends/family? Pm me if you'd like. You know I'm praying for you as 
so many others on here are as well!!!

Love and big hugs,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Friday, April 29, 2016 'Marcie Goodman' via CMLHope 
 wrote:

Hi Friends,


I've been off line for a bit. My husband was hospitalized beginning of January 
for a week due to numerous falls. He has early stages atypical Parkinson's or 
something similar. In March I was hospitalized for bottomed out hematocrit. 
Then 10 days ago he had a stroke  While in Johns Hopkins, where he is still a 
patient, he needed emergency bowel resection. Trying to recover from that to 
get to inpatient rehab. A long road but one day and one step at a time. We feel 
very blessed for the wonderful care he has received. 


Marcie


Sent from my iPhone


On Apr 29, 2016, at 7:45 PM, Joyce Mesnarich  wrote:

Jeanie and Richard,

I am here and monitoring.  I just don’t have anything worth reporting.  LOL  
Unless you want to hear about my exciting senior life.  My hubby Wayne goes 
back to see Dr Talpaz in August.  We are hoping for a good PCR report and the 
supporting blood tests as well.  We are gearing up for a family reunion of 
sorts.  Our daughter/husband are coming from the east coast and our 
granddaughter and our NEW great grandson are coming from the west coast.  The 
baby is 6 months old and we have not met him yet.  So excited.  I know I will 
be exhausted but it will be worth it.

        Joyce in IL




On Apr 29, 2016, at 7:39 AM, 'Icandoallttc' via CMLHope 
 wrote:


I don't think so. We have many Christians on this list.  Thanks for your quick 
reply.   All is good.  

My Motto: Faith and Pills❤️

With Jeanie 18,s Chi

Dx 1/2004. CML Leukemia

Started Gleevec 2/2004

Started Tasigna  9/2009

Started Sprycel 11/2009

Started Ponatinib January 2015

Dr Balducci Moffitt Cancer Center


On Apr 29, 2016, at 12:31 AM, Richard H  wrote:

I had assumed that since this is Passover period that many are participating.

Richard H. 

On Thursday, April 28, 2016 at 3:39:44 PM UTC-5, Icandoallttc wrote:

Just testing.   

My Motto: Faith and Pills❤️ 
With Jeanie 18,s Chi 
Dx 1/2004. CML Leukemia 
Started Gleevec 2/2004 
Started Tasigna  9/2009 
Started Sprycel 11/2009 
Started Ponatinib January 2015 
Dr Balducci Moffitt Cancer Center 

> On Apr 19, 2016, at 11:55 AM, Icandoallttc  wrote: 
> 
> 
> 
>  
> 
> 
> 
> My Motto: Faith and Pills❤️ 
> With Jeanie 18,s Chi 
> Dx 1/2004. CML Leukemia 
> Started Gleevec 2/2004 
> Started Tasigna  9/2009 
> Started Sprycel 11/2009 
> Started Ponatinib January 2015 
> Dr Balducci Moffitt Cancer Center 


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Re: [CMLHope] To Susan Zimmerman

['Susan Zimmerman' via CMLHope]

Marcie, 
So glad the gall bladder settled down. I give our God ALL the credit for that! 
So sorry to hear about your husband's issues as well. Is he doing ok now? Not 
sposed to take turns at the hospital. How will you ever get in a vacation? 
Blessings at Passover time.

Love, 



Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Saturday, March 26, 2016 'Marcie Goodman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thanks, Susan. I missed an appointment for blood labs because my husband was in 
the hospital and having complications from his medical issues. No one to blame 
but myself. 


The pain on side has gone so at least for now I'm not going to worry about it. 
I'll be following up this week with my doctor for more labs and tests. 


So glad you are doing well. This is the season for miracles and I wish you and 
Roy and the family a happy and very blessed Easter. 


Marcie 

Sent from my iPhone


On Mar 24, 2016, at 5:25 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

So sorry to hear about a hospital stay. These are not places we want to hang 
outlow red cells does not sound good, but I'm sure you have great docs. Was 
that low a gradual thing or quick? Seems they should or could have caught it 
before you bottomed out if it was gradual. 

I sure hope it turns out the gallbladder is fine. He still heals today so I'll 
pray! You could have gotten time off work in an easier way, I'm sure.

Hope you gets lots of extra tlc and consider this part of it!!!  You are 
special to me and many others on here!  Keep us updated!!!

18's and fight on,
Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Thursday, March 24, 2016 'Marcie Goodman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan, as always, I have you and Roy in my prayers. Please let us know how your 
test turns out. 


I just got out of hospital because my red cells bottomed out and I became very 
sick. So some transfusions and several days later, just came home. I will be 
undergoing more tests, might have gallbladder problem which arose after I was 
discharged, naturally!  Ultrasound tomorrow. Never dull but always interesting!


Marcie




Sent from my iPhone


On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thanks for the encouragement. I may write him but not confident he would have 
any different answers. Dr. Jessica Altman is completely on top of things for 
me. I"ve been to two other specialists at Nwestern to dig into 
causesnothing unusual except cavernous malformations turns up. Have checked 
everything at least three times over the yrs. So again off meds hopefully for a 
long time unless #'s go high. 

Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!

Hope all is well with you!

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan:

Are you able to have an appointment with Dr. Druker in Portland, Oregon?

At least email him

Hugs,
Susan Rosenthal

Have a wonderful day

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Re: [CMLHope] To Susan Zimmerman

['Susan Zimmerman' via CMLHope]

Dear Jeanie, so sorry you are still in the dark about the side pain. I was 
hoping they would ask for a pet scan to rule out a different kind of cancer. I 
encourage you again to get to the bottom of it.is it at all connected to 
plural effusion? Ponatinib has some ability to give heart or bleeding problems 
said my doc. Because of my bleeding my doc said it would never be the right one 
for me. So glad it's working for you!  Don't mean to share negatives. I know 
your faith and ponatinib are doing well for you!  

Blessings and 18's,



Susan F. Zimmerman


On Thursday, March 24, 2016 'Icandoallttc' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Hi Susan and thanks so much. 

My side pain is still bad but tests show nothing. Just treating the pain.  I 
read something about an MS hug.  My side pain has a lot of similarities to 
that.  

I think the tkis caused this as it got worse when I had to go on Tasigna.  

My Creatine was up but it seems to go up and down along with potassium.  

I've been on Ponatinib for 12 months now. 

No test planned thank Heavens. Have to go back in 3 months.  They take PCR 
every 3 months. I forgot to get my last results. Thanks again.  

My Motto: Faith and Pills❤️

With Jeanie 18,s Chi

Dx 1/2004. CML Leukemia

Started Gleevec 2/2004

Started Tasigna  9/2009

Started Sprycel 11/2009

Started Ponatinib January 2015

Dr Balducci Moffitt Cancer Center


On Mar 24, 2016, at 5:30 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thank you so much, Jeanie!!! You are special to us all. How's the sideache and 
any more tests about it specifically?
18"s,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Thursday, March 24, 2016 'Icandoallttc' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Hi Susan and Marcie

Prayers for both of you.  Sorry for your hospital stay but we need them when we 
get sick.  I hope you find the root of your problems.  

I had my gallbladder out many years ago.   That's some bad pain.  Good luck. 

Susan good luck off meds.  Hang in there and fight. Blessings 

My Motto: Faith and Pills❤️

With Jeanie 18,s Chi

Dx 1/2004. CML Leukemia

Started Gleevec 2/2004

Started Tasigna  9/2009

Started Sprycel 11/2009

Started Ponatinib January 2015

Dr Balducci Moffitt Cancer Center


On Mar 24, 2016, at 5:07 PM, 'Marcie Goodman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan, as always, I have you and Roy in my prayers. Please let us know how your 
test turns out. 


I just got out of hospital because my red cells bottomed out and I became very 
sick. So some transfusions and several days later, just came home. I will be 
undergoing more tests, might have gallbladder problem which arose after I was 
discharged, naturally!  Ultrasound tomorrow. Never dull but always interesting!


Marcie




Sent from my iPhone


On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thanks for the encouragement. I may write him but not confident he would have 
any different answers. Dr. Jessica Altman is completely on top of things for 
me. I"ve been to two other specialists at Nwestern to dig into 
causesnothing unusual except cavernous malformations turns up. Have checked 
everything at least three times over the yrs. So again off meds hopefully for a 
long time unless #'s go high. 

Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!

Hope all is well with you!

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan:

Are you able to have an appointment with Dr. Druker in Portland, Oregon?

At least email him

Hugs,
Susan Rosenthal

Have a wonderful day

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Re: [CMLHope] To Susan Zimmerman

['Susan Zimmerman' via CMLHope]

Thank you so much, Jeanie!!! You are special to us all. How's the sideache and 
any more tests about it specifically?
18"s,



Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Thursday, March 24, 2016 'Icandoallttc' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Hi Susan and Marcie

Prayers for both of you.  Sorry for your hospital stay but we need them when we 
get sick.  I hope you find the root of your problems.  

I had my gallbladder out many years ago.   That's some bad pain.  Good luck. 

Susan good luck off meds.  Hang in there and fight. Blessings 

My Motto: Faith and Pills❤️

With Jeanie 18,s Chi

Dx 1/2004. CML Leukemia

Started Gleevec 2/2004

Started Tasigna  9/2009

Started Sprycel 11/2009

Started Ponatinib January 2015

Dr Balducci Moffitt Cancer Center


On Mar 24, 2016, at 5:07 PM, 'Marcie Goodman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan, as always, I have you and Roy in my prayers. Please let us know how your 
test turns out. 


I just got out of hospital because my red cells bottomed out and I became very 
sick. So some transfusions and several days later, just came home. I will be 
undergoing more tests, might have gallbladder problem which arose after I was 
discharged, naturally!  Ultrasound tomorrow. Never dull but always interesting!


Marcie




Sent from my iPhone


On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thanks for the encouragement. I may write him but not confident he would have 
any different answers. Dr. Jessica Altman is completely on top of things for 
me. I"ve been to two other specialists at Nwestern to dig into 
causesnothing unusual except cavernous malformations turns up. Have checked 
everything at least three times over the yrs. So again off meds hopefully for a 
long time unless #'s go high. 

Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!

Hope all is well with you!

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan:

Are you able to have an appointment with Dr. Druker in Portland, Oregon?

At least email him

Hugs,
Susan Rosenthal

Have a wonderful day

-- 
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Re: [CMLHope] To Susan Zimmerman

['Susan Zimmerman' via CMLHope]

Marcie,
I'm hoping for some quiet time for you and your hubby. Not exactly dull, but 
peaceful!



Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Thursday, March 24, 2016 'Marcie Goodman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan, as always, I have you and Roy in my prayers. Please let us know how your 
test turns out. 


I just got out of hospital because my red cells bottomed out and I became very 
sick. So some transfusions and several days later, just came home. I will be 
undergoing more tests, might have gallbladder problem which arose after I was 
discharged, naturally!  Ultrasound tomorrow. Never dull but always interesting!


Marcie




Sent from my iPhone


On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thanks for the encouragement. I may write him but not confident he would have 
any different answers. Dr. Jessica Altman is completely on top of things for 
me. I"ve been to two other specialists at Nwestern to dig into 
causesnothing unusual except cavernous malformations turns up. Have checked 
everything at least three times over the yrs. So again off meds hopefully for a 
long time unless #'s go high. 

Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!

Hope all is well with you!

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan:

Are you able to have an appointment with Dr. Druker in Portland, Oregon?

At least email him

Hugs,
Susan Rosenthal

Have a wonderful day

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Re: [CMLHope] To Susan Zimmerman

['Susan Zimmerman' via CMLHope]

So sorry to hear about a hospital stay. These are not places we want to hang 
outlow red cells does not sound good, but I'm sure you have great docs. Was 
that low a gradual thing or quick? Seems they should or could have caught it 
before you bottomed out if it was gradual. 

I sure hope it turns out the gallbladder is fine. He still heals today so I'll 
pray! You could have gotten time off work in an easier way, I'm sure.

Hope you gets lots of extra tlc and consider this part of it!!!  You are 
special to me and many others on here!  Keep us updated!!!


18's and fight on,
Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Thursday, March 24, 2016 'Marcie Goodman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan, as always, I have you and Roy in my prayers. Please let us know how your 
test turns out. 


I just got out of hospital because my red cells bottomed out and I became very 
sick. So some transfusions and several days later, just came home. I will be 
undergoing more tests, might have gallbladder problem which arose after I was 
discharged, naturally!  Ultrasound tomorrow. Never dull but always interesting!


Marcie




Sent from my iPhone


On Mar 24, 2016, at 5:01 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Thanks for the encouragement. I may write him but not confident he would have 
any different answers. Dr. Jessica Altman is completely on top of things for 
me. I"ve been to two other specialists at Nwestern to dig into 
causesnothing unusual except cavernous malformations turns up. Have checked 
everything at least three times over the yrs. So again off meds hopefully for a 
long time unless #'s go high. 

Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!

Hope all is well with you!

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11



On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Susan:

Are you able to have an appointment with Dr. Druker in Portland, Oregon?

At least email him

Hugs,
Susan Rosenthal

Have a wonderful day

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RE: [CMLHope] To Susan Zimmerman

['Susan Zimmerman' via CMLHope]

Thanks for the encouragement. I may write him but not confident he would have 
any different answers. Dr. Jessica Altman is completely on top of things for 
me. I"ve been to two other specialists at Nwestern to dig into 
causesnothing unusual except cavernous malformations turns up. Have checked 
everything at least three times over the yrs. So again off meds hopefully for a 
long time unless #'s go high. 

Tomorrow getting tested again w bcr/abl. Best answers are through prayer!!!

Hope all is well with you!

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Thursday, March 17, 2016 'Susan Rosenthal' via CMLHope 
 wrote:
Susan:

Are you able to have an appointment with Dr. Druker in Portland, Oregon?

At least email him

Hugs,
Susan Rosenthal

Have a wonderful day

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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

['Susan Zimmerman' via CMLHope]

So glad to hear the good news! That hour must have been a long one after 
discharge. You'll be playing tennis in no time!!

Love, hugs and 18's



Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Tuesday, March 22, 2016 Myvety2k via CMLHope <cmlhope@googlegroups.com> 
wrote:

Thanks for the good news Marty.

 

greenie

 

In a message dated 3/22/2016 12:47:59 A.M. Eastern Daylight Time, 
wa2...@gmail.com writes:

Hi Susan, 


Yes I am finally home. Left the hospital at 3:00 PM and it took my wife about 
one hour to drive back home. The pacemaker is in and adjusted and fine tuned. 
Amazing how these work. No more fainting spells which only would last for only 
2 seconds so I haven't actually fainted. I was always been able to keep my eyes 
open and hear as well as even hearing and talking   Have some pain where they 
made the incision but some Tylenol PM should help me sleep, nothing I can't 
handle.


Thank you for asking about me.   


18's,


Marty


On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Love you to pieces, Marty! Hope you comfortably home by now. An update for me, 
please!

18's,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Monday, March 21, 2016 Myvety2k via CMLHope <cmlhope@googlegroups.com> wrote:

Marty, got my fingers crossed.

 

greenie

 

In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
wa2...@gmail.com writes:

Hi Beth, 

I am actually still in the hospital but maybe today I will be getting out just 
have to wait for the doctors when they make their rounds. I will keep everyone 
updated.

18's,

Marty

bkbarney via CMLHope <cmlhope@googlegroups.com> wrote:
Dear Marty, 

So glad you are out of the hospital! And Peg, you are so right about what you 
said to Jeanie...Hope everyone is doing as well as possible. Thinking of all of 
you...love, and 18's Beth

-Original Message-

From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
To: peg <peg@live.com>
Cc: CMLHope <cmlhope@googlegroups.com>
Sent: Fri, Mar 18, 2016 11:19 am
Subject: [CMLHope] Re: Dizzy all day

Thanks Peg,

You are so right.  I was reading the side effects of ponatinib and i was 
thinking I have to take this??!

Well yes I do and blood clots and heart problems are right up there high on the 
list. 

My potassium tends to be high also and you can get heart problems from that. 

Just have to fight on and thanks again. 




My Motto: Faith and Pills❤️ 

With Jeanie 18,s Chi 

Dx 1/2004. CML Leukemia

Started Gleevec 2/2004

Started Tasigna  9/2009

Started Sprycel 11/2009

Started Ponatinib January 2015

Dr Balducci Moffitt Cancer Center


On Mar 18, 2016, at 12:00 PM, peg <peg@live.com> wrote:


Hi Jeanie,  


I was traveling on business this week and just checked in and am wondering if 
you are feeling better?  


I had to caution another cancer patient recently not to write off sudden 
changes as normal...caused by treatment, age, etc.  The new generation of meds 
to treat CML and other cancers can have side effects that can be deadly if not 
caught in time.  Sprycel was a really good example of this. Prior to the FDA 
warning that it can cause deadly pulmonary hypertension no one was paying 
attention to folks that were already on it.  When one of our CML warriors 
started feeling weak and dizzy, even her doctor dismissed it, for months, until 
she collapsed and woke up in the cardiac care unit.  She almost died, and had a 
long road to recovery. Her spreading the word saved other lives!   Everyone 
should know their meds, know what the symptoms are of the dangerous side 
effects and alert their doctor if those symptoms present. It doesn't hurt to 
tell the doctor you are concerned it is a side effect of your meds, you would 
be surprised how many doctors are not familiar with the side effects of the 
meds they are prescribing!  


I think those of us living with cancer or any other chronic disease are kind of 
stoic and don't whine a lot...but sometimes we should. 


Note to Marty...since I am sure you are reading this...you are in my prayers!!


Fight on,

Peg

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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

['Susan Zimmerman' via CMLHope]

Love you to pieces, Marty! Hope you comfortably home by now. An update for me, 
please!

18's,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Monday, March 21, 2016 Myvety2k via CMLHope  wrote:

Marty, got my fingers crossed.

 

greenie

 

In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
wa2...@gmail.com writes:

Hi Beth, 

I am actually still in the hospital but maybe today I will be getting out just 
have to wait for the doctors when they make their rounds. I will keep everyone 
updated.

18's,

Marty

bkbarney via CMLHope  wrote:
Dear Marty, 

So glad you are out of the hospital! And Peg, you are so right about what you 
said to Jeanie...Hope everyone is doing as well as possible. Thinking of all of 
you...love, and 18's Beth

-Original Message-

From: 'Icandoallttc' via CMLHope 
To: peg 
Cc: CMLHope 
Sent: Fri, Mar 18, 2016 11:19 am
Subject: [CMLHope] Re: Dizzy all day

Thanks Peg,

You are so right.  I was reading the side effects of ponatinib and i was 
thinking I have to take this??!

Well yes I do and blood clots and heart problems are right up there high on the 
list. 

My potassium tends to be high also and you can get heart problems from that. 

Just have to fight on and thanks again. 




My Motto: Faith and Pills❤️ 

With Jeanie 18,s Chi 

Dx 1/2004. CML Leukemia

Started Gleevec 2/2004

Started Tasigna  9/2009

Started Sprycel 11/2009

Started Ponatinib January 2015

Dr Balducci Moffitt Cancer Center


On Mar 18, 2016, at 12:00 PM, peg  wrote:


Hi Jeanie,  


I was traveling on business this week and just checked in and am wondering if 
you are feeling better?  


I had to caution another cancer patient recently not to write off sudden 
changes as normal...caused by treatment, age, etc.  The new generation of meds 
to treat CML and other cancers can have side effects that can be deadly if not 
caught in time.  Sprycel was a really good example of this. Prior to the FDA 
warning that it can cause deadly pulmonary hypertension no one was paying 
attention to folks that were already on it.  When one of our CML warriors 
started feeling weak and dizzy, even her doctor dismissed it, for months, until 
she collapsed and woke up in the cardiac care unit.  She almost died, and had a 
long road to recovery. Her spreading the word saved other lives!   Everyone 
should know their meds, know what the symptoms are of the dangerous side 
effects and alert their doctor if those symptoms present. It doesn't hurt to 
tell the doctor you are concerned it is a side effect of your meds, you would 
be surprised how many doctors are not familiar with the side effects of the 
meds they are prescribing!  


I think those of us living with cancer or any other chronic disease are kind of 
stoic and don't whine a lot...but sometimes we should. 


Note to Marty...since I am sure you are reading this...you are in my prayers!!


Fight on,

Peg

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RE: [CMLHope] Dizzy all day

['Susan Zimmerman' via CMLHope]

Dear Jeanie, 
Sorry you're having troubles today. I havent been on for awhile cuz I've had 
the wonderful flu...wheezing, coughing, exhausted. I'm getting over it 
graduallytwo days ago I slept literally all day and night except for two 
light meals.  Been on antibiotic for it.

Been tested again since going off bosulif cuz of the strokeint'l. Number 
was .28quite a bit elevated from .019the test a month before.

I am not overly concerned at this point. Being 

tested monthly locally and will go every 3 months to chicago. They are hoping I 
will agree to go back on bosulif at 100 mg every other day to begin. I am not 
ready at this point.
Have seen two other specialists at Northwes%ern recommended by Dr. Altman. Many 
tests showed nothing out of the ordinary!!! Rather frustrating but enjoying no 
meds! Oh bp was up so back on bp meds again.

I havent deleted your posts but confess I havent read them yet either. 

You all are in my prayers and I hope I'm in yours for my #"s to stay down.

Fightin on and 18's to all,
Susan F. Zimmerman

On Wednesday, March 16, 2016 'Icandoallttc' via CMLHope 
 wrote:
Hi all
I woke up dizzy and have had it all day. Ive had this before so not to 
concerned yet. 
Could be my potassium is up. 
I hope everyone is good tonight. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Just wanted to check in with folks I remember

['Susan Zimmerman' via CMLHope]

Yes Judy, 
I was off gleevec for over seven years after having brain bleeds (small strokes 
because of the medicine.) i was tested every 3 mos. all that time. I stayed in 
cellular remission but not in molecular remission. Long story but I pray 
you get to stay off  until they find a cure!! 

We are all rooting for you!!! 
Blessings and 18's,
Susan zimmerman





"Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you."  Hab. 
1:5

On Thursday, February 4, 2016 'judy' via CMLHope  
wrote:

Hello I for got my pass work so couldn get on cml I was on gleevec for I don't 
rember how long ND MY DR SAIR I DIDN'T HAVE TO TAKE IT ANY MORE MY COUNTS HAD 
BEEN GOOD AND NO SIGN OF THE CML I VE BEEN OFF IT FOR ABOUT YEAR NOW AND STILL 
NO SIGN OF THE CML COUNTS STILL GOOD   hAS ANY BODY HEARD OF THIS IF O HOW ARE 
YOU DOING???   judy



On Thursday, February 4, 2016 4:26 PM, Marty Gartenberg  
wrote:



Hi Peg,


I don't want you to ever forget something. TWO NUMBERS 18's I always put them 
at the end of any of my posts, and if you don't remember the their meaning it 
is life.


I think that you must have remembered what I have gone through for this past 
year and also from 26 years ago. 


You know what I see more people posting 18's I wonder why but I already know 
why.


18's

Marty


On Tue, Feb 2, 2016 at 10:55 AM, peg  wrote:

Hi all,

Thought I would check in today...it has been a while.  I see lots of new names, 
but still a few that I remember.  I am now two years at zero detectable on only 
100mg of Tasigna daily...1/4th of the recommended dosage.  It got a bit rocky 
for a while, not from the CML, but along that course they diagnosed me with 
five other, assume-ably unrelated, cancers including skin, gastric, thyroid and 
lungs!  While I never lost my hope, I didn't wanted to dim anyone else's hope 
by sharing news from my scary corner. However, as of last month, all cancers 
are regressing, some we know for certain are also due to Tasigna, and well, the 
others they are not sure why, so I choose to believe it is also because of the 
Tasigna...and faith!  I am battling some malnutrition issues that were from a 
severe reaction I had to Gleevec when I was first diagnosed six years ago, but 
now knowing what those are we are slowly making improvement towards gaining 
back a quality of life.  You can never underestimate the value of quality of 
life!  I hope you are all finding your own quality, never give up on that.  You 
are never far from my thoughts and prayers!  


Six years and still here! 

Fight on!!!

peg

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Re: [CMLHope] Info update

['Susan Zimmerman' via CMLHope]

Dear Beth and Marty,


Sweet Beth is one of my inspirations, in case you didn't know.  I pray all is 
well with you?!  We need an update.  Happy Valentine's Day.


Marty, I sure hope your dire circumstances have improved this week, even just a 
tiny little bit.  A tiny bit is to rejoice over!  I love all you guys so much, 
and we truly are family.  Happy Valentine's Day and get your wife something 
special.


Jeanie, I sure do hope your side pain is better, too.  Even just a tiny bit!  
That V.Day will lift your spirits and that you know you are loved!


Jon, I'm expecting good results for your next testing.  I've gotta go soon 
myself to find out if my numbers are staying low.  Happy Vday!


The rest that we haven't heard from latelykeep in touch with us!  I don't 
read posts every day, but will eventually!


So far I've gotten a birthday balloon, a big neat card, and many kisses and 
vows of love from my hubby.  Oh, also flowers!  We've been celebrating for two 
weeks.  e-cards are so easy to send, and I have fun doing it, so he's gotten 
candy twice and a physical card, and many e-mailed cards!  He knows better than 
to buy me candy, it's poison for a diabetic.  I eat dark chocolate anyway, lol.


Blessings and 18's for life of course, Marty,


Susan F. Zimmerman
"Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you."  Hab. 
1:5



-Original Message-
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Fri, Feb 12, 2016 9:29 pm
Subject: Re: [CMLHope] Info update



Susan, Susan what am I to do with you? you are so sweet and for this. I have no 
doubt that everything will turn out well for you and your family just as is has 
been doing for me, Shelly and our children. I'm sure that you can imagine 
everything that I have been through and also so have you.


I also see that you are using 18"s as you end all of your posts. Do you know 
why? Because we and a lot of others share something. Life


18's again.


Marty









On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

Dear Marty,


So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all rooting 
for you to beat this problem with immunity ASAP.  You are not complaining, just 
stating a reason for us to pray for you!  If we don't know about it we can't 
zero in on it in intercessory prayer.  You've got my prayers and I know those 
of everyone on here who prays to the most High God..


Two trips to Chicago have so far found nothing really wrong with my blood that 
would cause the stroke.  This time they know it's from the bosulif, but waiting 
for results from the MRA and MRI that also happened.


So I'm enjoying time off the TKI, and living life to the fullest every daY.  
EVERYONE have a wonderful Valentine weekend, please.  If ya don't have a 
sweetie, know that you can treat yourself better than usual for the occasion!  
(Bubble bath, massage, favorite meal, etc. just for you).  The rest of ya try 
to take good care of your significant other!  (Of course don't fall for the 
media's need to spend lots of money...lol)


Heartfelt love and 18's,



Susan F. Zimmerman




-Original Message-
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Fri, Feb 12, 2016 4:04 pm
Subject: Re: [CMLHope] Info update




Ok, let's see what happens at your next blood test.
I just had one this morning and sorry to say my WBC was only 1.87 so that puts 
me having a problem with immunity but I know that it is coming from the CMV 
virus that I am having so I have to be very careful until the reduced 
medication starts to work again. In the mean time I have gotten some terrible 
mouth sores just like I got when I had the bone marrow transplant caused by all 
of the Chemo and radiation. Something that I will never forget. Believe it or 
not that was by far the worst part of it. However I just try not to complain 
about it. And do you know why? I'm still alive today.


And now you know what 18's stands for... Life!


So I bid you many more 18's.


Marty   



On Fri, Feb 12, 2016 at 5:49 AM, John Barrons <jl...@rogers.com> wrote:


Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have a 
cbc a week this Tuesday. John

Sent from my iPad


On Feb 12, 2016, at 6:59 AM, Marty Gartenberg <wa2...@gmail.com> wrote:




Hi John,


What are your WBC now? I know a man who lives in Canada a very long time ago 
actually more then 35 years ago and he never took any TKI's but he did take 
something and it did "burn out his Leukemia" but unfortunately he has to have 
blood transfusions I think every two weeks. He is the longest surviving person 
in this world.


I probably am in there as well logging in going on 27 years after having a bone 
marrow transplan

Re: [CMLHope] Info update

['Susan Zimmerman' via CMLHope]

Dear Marty,


So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all rooting 
for you to beat this problem with immunity ASAP.  You are not complaining, just 
stating a reason for us to pray for you!  If we don't know about it we can't 
zero in on it in intercessory prayer.  You've got my prayers and I know those 
of everyone on here who prays to the most High God..


Two trips to Chicago have so far found nothing really wrong with my blood that 
would cause the stroke.  This time they know it's from the bosulif, but waiting 
for results from the MRA and MRI that also happened.


So I'm enjoying time off the TKI, and living life to the fullest every daY.  
EVERYONE have a wonderful Valentine weekend, please.  If ya don't have a 
sweetie, know that you can treat yourself better than usual for the occasion!  
(Bubble bath, massage, favorite meal, etc. just for you).  The rest of ya try 
to take good care of your significant other!  (Of course don't fall for the 
media's need to spend lots of money...lol)


Heartfelt love and 18's,



Susan F. Zimmerman




-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Fri, Feb 12, 2016 4:04 pm
Subject: Re: [CMLHope] Info update



Ok, let's see what happens at your next blood test.
I just had one this morning and sorry to say my WBC was only 1.87 so that puts 
me having a problem with immunity but I know that it is coming from the CMV 
virus that I am having so I have to be very careful until the reduced 
medication starts to work again. In the mean time I have gotten some terrible 
mouth sores just like I got when I had the bone marrow transplant caused by all 
of the Chemo and radiation. Something that I will never forget. Believe it or 
not that was by far the worst part of it. However I just try not to complain 
about it. And do you know why? I'm still alive today.


And now you know what 18's stands for... Life!


So I bid you many more 18's.


Marty   



On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:


Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have a 
cbc a week this Tuesday. John

Sent from my iPad


On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:




Hi John,


What are your WBC now? I know a man who lives in Canada a very long time ago 
actually more then 35 years ago and he never took any TKI's but he did take 
something and it did "burn out his Leukemia" but unfortunately he has to have 
blood transfusions I think every two weeks. He is the longest surviving person 
in this world.


I probably am in there as well logging in going on 27 years after having a bone 
marrow transplant. 


Different people react to different things and sometimes some of them defies 
the logic of these things that are just meant to be. Hey you seem to be one of 
them
Good luck to you!


Remember what 18's stands for.


Marty  



On Thu, Feb 11, 2016 at 8:01 AM,   wrote:


I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a week 
to keep  the counts low. the counts do fluctuate from time to time. There does 
not seem to an answer for the white blood cells to have increased so suddenly. 
My oncologist did not think it was a change to blast phase. So I go once a week 
or once every two weeks to check them. John B. 
 



 
 
 
 On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg  
wrote:

  

 


Hi John,


First let me say hello to your wife, and believe me I personally know what she 
has been going through.


Now what I can't understand why your white blood count went over 100,000. And 
what pill have you been taking? Usually you need to be taking more then 1 pill 
and that should be every day. So John I am really puzzled. 


I wish you as well as your wife the very best, because of mainly what you 
wrote. Yes, life is good.


If you have been reading any of my posts I always end them with 18's which is a 
symbol for life. 


18's,


Marty



On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:

Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was not 
feeling very well. My oncologist said if I felt worse go to emergency, which I 
did on Dec 26. I had pneumonia and as I result my heart was having trouble. In 
addition, my white blood count went over 100,000. I was in hospital until Jan 
16 when I was transferred to a rehab centre to gain back some strength. I 
arrived back at home last Saturday, so glad to be home I can't begin to say. 
All is well as far as the things that were wrong. Mind you I have to gain a lot 
of weight back. The leukemia is back to normal and I am on 1 pill per week. 
That was along time to be away and I was difficult for my wife also. Life is 
good John B

Sent from my iPad

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[CMLHope]
A support group of http://cmlhope.com/
-

You received 

Re: [CMLHope] Just wanted to check in with folks I remember

['Susan Zimmerman' via CMLHope]

Hello Peg,
So glad to hear from you!  We are tough, us CML bunch.  We can take it if you 
want to share with us the additional battles that have gone along with your 
CML.   We are here to encourage!  You don't need to suffer alone, (altho I'm 
hoping you have a good family, etc.)  Your battle could have involved fear, as 
most people would let it in.  But just to remind, fear is False Evidence 
Appearing Real, put there by the enemy.  Can you think of one thing that is 
good about fear?  Same goes for worry.  No, they are only destructive.  Many of 
us have come to the place where we know our bodies are only one third of our 
whole being, and probably the least important of the three. (body, soul and 
spirit).  So we try to let the other two rule our thinking, our outward 
actions, and so on.  I know because of your faith you walk by faith, not by 
sight!


I just thought of a good joke that came from facebook.  A big picture of a huge 
grisly bear roaring.  The caption read, "Fear NOTHING!  Except a grisly bear, 
because they will kill you."


Anyway, so glad your reports are getting better all the time. I hope you enjoy 
your days and come back to share a word with us often!  We have missed you!


18's and blessings,

Susan F. Zimmerman
"Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you."  Hab. 
1:5



-Original Message-
From: bkbarney via CMLHope 
To: cmlhope 
Sent: Tue, Feb 2, 2016 3:36 pm
Subject: Re: [CMLHope] Just wanted to check in with folks I remember


Thanks for the update Peg..I am glad that things sound a bit more stable 
for you...I do understand about not wanting to share with others if your road 
is hard so as to not scare us, ..but truly, each of us is unique, and our 
bodies respond very differently to treatments..so, please don't worry. Getting 
good support is also key to quality of life, as it's a lot less lonely...and 
together we can persevere... I am so sorry you have had to go through all that 
you didI hope and pray that it somehow gets easier for you...wow...2 years 
at zero is marvelous, but the price you have paidI don't have words for 
that..except you are so resilient, so amazingtake good care and know that 
you are cared for and loved here...


18's, love and hugs,
Beth



-Original Message-
From: Myvety2k via CMLHope 
To: cmlhope 
Sent: Tue, Feb 2, 2016 2:24 pm
Subject: Re: [CMLHope] Just wanted to check in with folks I remember



Peg, that was my Aunt's name.  Anyway, don't be a stranger.  All of us that 
have CML are in the same boat but taking different drugs.  I've been on Gleevec 
16 years 1 month, yes their are side effects but done that I can't handle.  
Cramps are the worse but I'm still here driving my wife crazy and she love's 
every second of it :)
 
greenie
club member #48
 

In a message dated 2/2/2016 1:55:33 P.M. Eastern Standard Time, 
peg@live.com writes:
  
Hi all,   
Thought I would check in today...it has been a while.  I see lots of   new 
names, but still a few that I remember.  I am now two years at zero   
detectable on only 100mg of Tasigna daily...1/4th of the recommended dosage.
It got a bit rocky for a while, not from the CML, but along that course   they 
diagnosed me with five other, assume-ably unrelated, cancers including   skin, 
gastric, thyroid and lungs!  While I never lost my hope, I didn't   wanted to 
dim anyone else's hope by sharing news from my scary corner.   However, as of 
last month, all cancers are regressing, some we know for   certain are also due 
to Tasigna, and well, the others they are not sure why,   so I choose to 
believe it is also because of the Tasigna...and faith!  I   am battling some 
malnutrition issues that were from a severe reaction I had to   Gleevec when I 
was first diagnosed six years ago, but now knowing what those   are we are 
slowly making improvement towards gaining back a quality of life.You can 
never underestimate the value of quality of life!  I hope   you are all finding 
your own quality, never give up on that.  You are   never far from my thoughts 
and prayers!  
  


  
Six years and still here! 
  
Fight on!!!
  
peg
  
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Re: [CMLHope] rob's message long ago

['Susan Zimmerman' via CMLHope]

Dear Rob,
So sorry to hear of your father's passing.  I'll remember you in my prayers.




Susan F. Zimmerman
"Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you."  Hab. 
1:5



-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Mon, Jan 18, 2016 6:12 pm
Subject: Re: [CMLHope] rob's message long ago



Rob,


I'm sorry to hear about your father. Now I am kind of confused you mention that 
your mother had or has CML?


18's,


M wrote:


 



I wanted to let all of you in the CML group know that my father Robert Wood
Neill has passed away. Many of you who are long term members know that the
CML group was started many years in the days long before Gleevec when my
mother Laquita was diagnosed with CML.  

In a message dated 1/16/2016 7:39:14 A.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:
  
Richard H.   I agree, well said.  I started   Gleevec the first week in 
Janurary 2000 16 years ago and I'm still pumping   blood.  Of course the way 
these people drive here in Southwest Florida   it's like driving in the Indy 
500 with blindfolds on.
  
 
  
greenie
  
  
In a message dated 1/16/2016 12:47:03 A.M. Eastern Standard Time,   
rbhuffm...@gmail.com writes:
  

Marti it is good to hear your (voice) and see you here.  I agree with you 
and Jeanie.  I'll start my 14th year the first of March with this wonderful 
group of loving and caring friends.  This history we give can only be given 
thru leadership of having been there fighting the fight.  But leadership 
always needs a significant special leader (General, Admiral) too narrow our 
path so that we can win the current battle.  Thanks for keeping us looking 
up to the sunrise of a new day and helping wash away all the doubt, fear, 
and other dark thoughts that detract us from fulfilling this life we have 
on Planet Earth.

18's

Richard H.  

On Friday, January 15, 2016 at 6:03:03 AM UTC-6, Icandoallttc wrote: 
  
  
Hi Marty and good to hear from you.  We were wondering what   happened.  
  
I believe the founder and narrator of this group is Rob.  His   mother had 
leukemia.  Are you there Rob??? 
  
Most of us have been here a long time.  I believe the group was   once a 
yahoo group.  
  
We are all warriors and help each other when we can. 
  
This makes my 12 th year and I joined the group early on.  
  
And yes we are all leaders in our own way and pioneers with the tkis   so 
that've can give our knowledge to the new warriors. 
  
I fight with faith and pills and I am a Christian. 
  
Much love.  
  
❤️

My Motto: Faith and Pills   
Jeanie 18,s
Dx 1/2004. CML Leukemia
  
Started Gleevec 2/2004
  
Started Tasigna  9/2009
  
Started Sprycel 11/2009
  
Started Ponatinib January 2015
  
Dr Balducci Moffitt Cancer Center

  

On Jan 13, 2016, at 12:38 AM, Marty Gartenberg    wrote:


  



For some reason my message did not come out so I am trying it once 
more, I do hope it does come through


This is directed to Sandi and everyone else.


Dearest Sandi, and I really mean that, but for a very special reason. 
It is not the words that I wright but it is my meaning. You and everyone
 else here are only here because all of us are meant to be here. Am I 
strong well maybe I am or I probably wouldn't be here right now. 




My question to you and everyone else that may be reading this are you 
also strong. You know what? You have to be because you are battling an 
awful disease, but my friends just like me am I still here, and are you.
 You bet we are.





So no matter how strong I may be and no matter how strong any of you 
may be, guess what? We are still here together and until "uncle GOD" 
determinants otherwise this is where we stay.




How many times have I been at deaths door? Now look at what you have. 
You have life, just as I do and do you know why it's really very simple 
because about a bit more then a decade ago some mortal man discovered a 
pill that changed the course of your lives. You, all of you are living 
proof. 





So I am not what anyone thinks about me because your living proof just 
as I am we are all strong in spite of what you think.




Am I a leader of this group perhaps I am, however  what about each and 
everyone else. Please try to understand people that are in a group are 
the power of that group.




OK so lately I have a little more activity in my life health wise then 
normal (whatever that may be) 




 

Re: [CMLHope] Re: stroke

['Susan Zimmerman' via CMLHope]

Thanks Jeanie,
I really do not worry because as you know, it's not productive and helps 
NOTHING.  I also am thankful my bp has gone down to normal without medication, 
as I really have tried to relieve all stress in my life.  Has your bp gone 
down?  I sure hope so.  We can create our own stress by worrying, or relax in 
the everyday joy of going through trials to make us stronger  I am praying 
for your side pain to go away, for sure.  I'd like for you to get to the bottom 
of that.  There's something causing it.  Have you considered having that pet 
scan I mentioned?  The earlier something is caught, of course the better.


Blessings and love to you as you enjoy every day as a gift.  18's,
SZ







-Original Message-
From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Mon, Jan 4, 2016 5:21 pm
Subject: Re: [CMLHope] Re: stroke



Hi Susan ,
Just wanted to tell you that my mom and grandmother both had strokes in their 
late 70s. 
My sister died of a stroke in her late 60s. So it runs in the women of my 
family.  
Of course they weren't on tkis but we're on medicines for other things. 
My doctor warned me to keep my BP down to avoid strokes while on ponatinib.  
Well all the BP meds make me sick so I can't take them. 
I think we have a lot of stress due to the CML and worrying about the meds we 
take; I know I do. 
Good luck and continue to mend and thanks for the info on strokes.  
My mom was completely out of it when she had her stroke. She had to learn to 
read and write again and attended those therapies. 
After a while she became her old self again until she fell and broke her hip. 
❤️

My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center


On Jan 3, 2016, at 9:00 PM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:



Hi Jeanie,
I have had four previous strokes, all due to trying the four other meds that 
are out.  With gleevec I had two strokes while I was on it that were minor.  
The docs were not convinced the gleevec caused it, but I was!  Then 2 years 
after being off all drugs for cml, I had a major stroke which at first left my 
eye frozen, and damaged hearing, along with balance problems.  Thankfully, 
those things all went away after 3 months.  I am most blessed.  Then each other 
pill I tried, (all 3 others) I had a symptom of stroke almost immediately.  
(bad eye bleed, frozen eye like the big stroke).  They could only find 
cavernous malformations in my brain to lend itself to such easy bleeding.  
About 9 months ago I went back on the last drug, bosulif, because my numbers 
were getting pretty high after 7 yrs of no meds at all.  I started with 100 mg 
of bosulif, which is very low. The usual dose is 500 mg.  When my numbers went 
up just a little after being in remission, the docs suggested I go to 300 mg.  
I agreed only to 200 mg.  So this time, I had doubled my dosage, and 10 days 
later, had double vision and severe nausea all afternoon right when we were 
sharing Christmas with my son and whole family on the 26th.  I wasn't sure 
about it, I thought it might be all the sugar I ate, as I am diabetic.  So 
decided just to hit the bed for the evening so as not to ruin their visit.  
Kids left next day. Then on Wednesday, continuing the double vision somewhat, I 
vomited.  The docs had all said one more symptom get to the e.r., so I went.  
Sure enough, the ct scan showed 4 new blood spots in four different parts of my 
brain. (that was a new one, usually they were all in same place.)  Luckily very 
little was affected this time, halleluhiah!


Long ago the statistics used to be only 1% had brain bleeds, i.e. strokes from 
these medications.  I am one of the 1%.  Don't know if the figures have 
changed, but one thing I do know.  None of you need to worry about this 
happening to you.  My father died of a brain aneurysm, so apparently I'm prone 
to it.  But I know I'll only go when it's His timing, not my own!  I'll keep 
plugging and try to keep a joyful heart until then!  Definitely planning on 
enjoying my retirement.


18's and love,
Susan Z




-Original Message-
From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sun, Jan 3, 2016 1:24 pm
Subject: Re: [CMLHope] Re: stroke



Hi Susan,
Just wondering how you knew you were having a stroke??  The tkis say wash your 
hands after handling and these are going in out stomach!!! 
Keep strong and keep fighting!!
❤️

My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center


On Jan 3, 2016, at 1:00 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
wrote:



Susan, you

Re: [CMLHope] Re: stroke

['Susan Zimmerman' via CMLHope]

Thank you so very much for all the well wishes!  It means a whole lot to me.  
Thanks Greenie, and Beth, and Jeannie and Marcie!!!  Sure wish we'd hear from 
Marty..  Does anyone have any contact with his family?


Greenie, I sure do feel safer at home for sure!  Now that I'm older, I am 
definitely not the "go" bug that I used to be. 


 I want to leave a legacy for my family of loving people really well and hoping 
they will see Christ in me.  I know you all feel the same way about not wasting 
time and enjoying every day.  When life becomes iffy, we value it far more, eh? 
 Every day is a gift and I hope I make it pleasant for someone else.  I can 
only do this if I pause before my every response instead of spewing out the 
first thing that comes in my head.  Sometimes that first thing is not so good, 
lol!


Enjoy 2016 as a marvelous gift to spread the good stuff, not the bad!  
18's and love,
SZ




-Original Message-
From: bkbarney via CMLHope 
To: cmlhope 
Sent: Sun, Jan 3, 2016 12:42 pm
Subject: Re: [CMLHope] Re: stroke


Susan,
 very happy you are out of the hospital...hope the new year ahead is full of 
joy, healing and renewed health for you...glad you are out of the hospital too. 
Please take good care...Love, and 18's Beth..


p.s. I was thinking the same thing about Marty..where are you Marty and how are 
you B



-Original Message-
From: Myvety2k via CMLHope 
To: cmlhope 
Sent: Sun, Jan 3, 2016 5:20 am
Subject: Re: [CMLHope] Re: stroke



SZ, theirs nothing like being in your own home, glad your out of the hospital 
it's safer to be at home.
 
greenie
 

In a message dated 1/2/2016 7:24:17 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:
  
  
  
Dear Angie, 
  


  
Hooray for 6 mos free of gleevec!  I'm so   hopeful I can stay off bosulif 
until I turn 65 next September without my   numbers going crazy.  I know you 
are thrilled to get your body back, lol!Thanks and you are right, what a 
way to end 2015!  So glad I got   out of hospital on the 31st, which made 
insurance so much easier for the   change in years.
  


  
All you blood buddies out there, best wishes to you   all and I lift you in my 
prayers whenever I hear about problems.  Anybody   heard from Marty lately?
  
It's been ages.
  


  
18's,
  
Susan Z

  
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You received this 

Re: [CMLHope] Re: stroke

['Susan Zimmerman' via CMLHope]

Hi Jeanie,
I have had four previous strokes, all due to trying the four other meds that 
are out.  With gleevec I had two strokes while I was on it that were minor.  
The docs were not convinced the gleevec caused it, but I was!  Then 2 years 
after being off all drugs for cml, I had a major stroke which at first left my 
eye frozen, and damaged hearing, along with balance problems.  Thankfully, 
those things all went away after 3 months.  I am most blessed.  Then each other 
pill I tried, (all 3 others) I had a symptom of stroke almost immediately.  
(bad eye bleed, frozen eye like the big stroke).  They could only find 
cavernous malformations in my brain to lend itself to such easy bleeding.  
About 9 months ago I went back on the last drug, bosulif, because my numbers 
were getting pretty high after 7 yrs of no meds at all.  I started with 100 mg 
of bosulif, which is very low. The usual dose is 500 mg.  When my numbers went 
up just a little after being in remission, the docs suggested I go to 300 mg.  
I agreed only to 200 mg.  So this time, I had doubled my dosage, and 10 days 
later, had double vision and severe nausea all afternoon right when we were 
sharing Christmas with my son and whole family on the 26th.  I wasn't sure 
about it, I thought it might be all the sugar I ate, as I am diabetic.  So 
decided just to hit the bed for the evening so as not to ruin their visit.  
Kids left next day. Then on Wednesday, continuing the double vision somewhat, I 
vomited.  The docs had all said one more symptom get to the e.r., so I went.  
Sure enough, the ct scan showed 4 new blood spots in four different parts of my 
brain. (that was a new one, usually they were all in same place.)  Luckily very 
little was affected this time, halleluhiah!


Long ago the statistics used to be only 1% had brain bleeds, i.e. strokes from 
these medications.  I am one of the 1%.  Don't know if the figures have 
changed, but one thing I do know.  None of you need to worry about this 
happening to you.  My father died of a brain aneurysm, so apparently I'm prone 
to it.  But I know I'll only go when it's His timing, not my own!  I'll keep 
plugging and try to keep a joyful heart until then!  Definitely planning on 
enjoying my retirement.


18's and love,
Susan Z




-Original Message-
From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sun, Jan 3, 2016 1:24 pm
Subject: Re: [CMLHope] Re: stroke



Hi Susan,
Just wondering how you knew you were having a stroke??  The tkis say wash your 
hands after handling and these are going in out stomach!!! 
Keep strong and keep fighting!!
❤️

My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center


On Jan 3, 2016, at 1:00 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> 
wrote:



Susan, you are a strong and amazingly positive woman...I am so sorry this 
happened..but trust you will heal.I think it's so hard to know what to 
do..regarding dosages and changing meds.trust your own knowing about your 
body and your own knowing about what may work best for you..


Much love and healing energy... Beth



-Original Message-
From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Wed, Dec 30, 2015 11:50 pm
Subject: Re: [CMLHope] Re: stroke



Dear all,
Just a note to say I'm in my local hospital. It did turn out to be a small 
stroke which started last Sat. In morning I will learn if 2nd cat svan showed 
the bleeding stopped. Prayers are appreciated. I am agitated w myself for 
agreeing to up the bosulif when my numbers increased just a little. If I had 
followed the doc's suggestion of an even higher dose I would be dead now. After 
10 days on 200 mg of bosulif, here comes another stroke! Regular dose is 500 
mg. I'm just weird. So now off all bosulif. Pray my numbers stay down for 
several months...dont need another one! God is in charge...Jeannie, without 
pills this time lol. You all mean so much to me. I'm feeling fine now. God 
bless and stay safe on new year's eve! Thanks for yr. prayers.
18's and love, Sz


Sent from my Sprint phone




-- Original message--
From: Myvety2k via CMLHope 
Date: Wed, Dec 30, 2015 3:34 PM
To: cmlhope@googlegroups.com;
Subject:Re: [CMLHope] Re: Merry Christmas and happy Hilidays




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Re: [CMLHope] Re: stroke

['Susan Zimmerman' via CMLHope]

Dear Angie,


Hooray for 6 mos free of gleevec!  I'm so hopeful I can stay off bosulif until 
I turn 65 next September without my numbers going crazy.  I know you are 
thrilled to get your body back, lol!  Thanks and you are right, what a way to 
end 2015!  So glad I got out of hospital on the 31st, which made insurance so 
much easier for the change in years.


All you blood buddies out there, best wishes to you all and I lift you in my 
prayers whenever I hear about problems.  Anybody heard from Marty lately?
It's been ages.


18's,
Susan Z

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Re: [CMLHope] Re: stroke

['Susan Zimmerman' via CMLHope]

Thanks Dave! Sz
Sent from my Sprint phone



-- Original message--From: Myvety2k via CMLHope Date: Thu, Dec 31, 2015 
7:51 AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Re: stroke
Sz, Hang in their I'll be thinking of good thoughts for you so that you can get 
better.   greenie In a message dated 12/31/2015 12:50:03 A.M. Eastern Standard 
Time, cmlhope@googlegroups.com writes:Dear all,  Just a note to say I'm in 
my   local hospital. It did turn out to be a small stroke which started last 
Sat.   In morning I will learn if 2nd cat svan showed the bleeding stopped. 
Prayers   are appreciated. I am agitated w myself for agreeing to up the 
bosulif when my   numbers increased just a little. If I had followed the doc's 
suggestion of an   even higher dose I would be dead now. After 10 days on 200 
mg of bosulif, here   comes another stroke! Regular dose is 500 mg. I'm just 
weird. So now off all   bosulif. Pray my numbers stay down for several 
months...dont need another one!   God is in charge...Jeannie, without pills 
this time lol. You all mean so much   to me. I'm feeling fine now. God bless 
and stay safe on new year's eve! Thanks   for yr. prayers.  18's and love, Sz  
  Sent from my   Sprint phone  
  -- Original   message--  From: Myvety2k via   CMLHope   Date: Wed, 
Dec 30, 2015   3:34 PM  To: cmlhope@googlegroups.com;  Subject:Re: [CMLHope]   
Re: Merry Christmas and happy Hilidays  
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Re: [CMLHope] Re: stroke

['Susan Zimmerman' via CMLHope]

Dear all,Just a note to say I'm in my local hospital. It did turn out to be 
a small stroke which started last Sat. In morning I will learn if 2nd cat svan 
showed the bleeding stopped. Prayers are appreciated. I am agitated w myself 
for agreeing to up the bosulif when my numbers increased just a little. If I 
had followed the doc's suggestion of an even higher dose I would be dead now. 
After 10 days on 200 mg of bosulif, here comes another stroke! Regular dose is 
500 mg. I'm just weird. So now off all bosulif. Pray my numbers stay down for 
several months...dont need another one! God is in charge...Jeannie, without 
pills this time lol. You all mean so much to me. I'm feeling fine now. God 
bless and stay safe on new year's eve! Thanks for yr. prayers.18's and love, Sz
Sent from my Sprint phone



-- Original message--From: Myvety2k via CMLHope Date: Wed, Dec 30, 2015 
3:34 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Re: Merry Christmas 
and happy Hilidays

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Re: [CMLHope] Re: Merry Christmas and happy Hilidays

['Susan Zimmerman' via CMLHope]

Merry Christmas and Happy New Year to all of you, ALL!!!  This was the best 
Christmas I can remember, as both my adult children and their families were in 
attendance.  It made the celebration wonderful with a 7 and a 4 yr old 
(grandkids).   I will be recuperating for a few days since they left yesterday. 
 Both my husband and I hit the sheets for a nap the minute they left!  Wouldn't 
trade it for the world.  Was not sure if I had stroke symptoms or a sugar 
overload on Saturday after a big party.  Double vision and near-vomiting for 
over three hours.  Took off my mono contacts after the LOOONNG ride home and in 
half an hour was fine.  Ten days before that I had doubled my dose of bosulif.  
Now not sure whether to keep on two a day or cut back to one a day again.  
Stroke is not worth the medicine.  I'll test it again and see.prayers 
appreciated.


18's and Enjoy every day,

Susan F. Zimmerman



-Original Message-
From: Richard H 
To: CMLHope 
Cc: icandoallttc 
Sent: Sat, Dec 26, 2015 12:17 am
Subject: [CMLHope] Re: Merry Christmas and happy Hilidays



Merry Christmas and happy holidays back your way and to all.

Santa was the BEST EVER.  I was able to bring my wife HOME.  Lots of in home 
care and therapy wi;l start next week. 

On Friday, December 25, 2015 at 2:44:03 PM UTC-6, Icandoallttc wrote:
Merry Christmas and happy Holidays to all. 
I hope everyone is good and that Santa was good to you.  

My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Test Day

['Susan Zimmerman' via CMLHope]

Hi Beth,
Thanks for asking about me.  I have not set up an appt. yet for Chicago.  Went 
back to 100mg a day of bosulif because I am trying to get my body to assimilate 
the vitamins and minerals and nutrients that will give me energy.  They think 
I'm on 200 mg at this point.  I must call them next week in Chicago and make an 
appt.  I still feel very blessed compared to so many who suffer regularly. So 
glad you are getting a reprieve from the medicine!!  Hoping you are feeding 
yourself a very good brand of vitamins and minerals while you are off the meds. 
 Liquid always assimilates faster and easier.  Our bodies need 60 minerals and 
30 vitamins and nutrients regularly in certain amounts to receive everything we 
need.  There is no possible way for us to receive it through our food.  Wheat 
now stands 10 inches tall in the fields, in opposition to 3 feet that it used 
to be.  The Round-up et al that is put on the fields goes into our bodies and 
destroys the crops first.  For those who have been told not to take supplements 
while on a chemo drug..I think that is balogna with a capital B.  We need 
them much MORE because the chemo trips us of the good stuff, especially the 
probiotics needed to keep our healthy flora going strong in our stomachs and 
upper and lower intestines.  


I will write you privately about coming to Chicago.  We often have to run in 
and run out quickly because of my husband's work.  Maybe we will be able to see 
you!


I will be out of town also from the 22nd thru Dec. 5th.  Going to New Orleans 
and Florida.  Grandkids first for T-giving and then to see his boss in Sanford, 
FL and have a little vacay. We will be near Disney staying.  Hooray, hope the 
weather holds!



Beth, enjoy your week in Florida, too!  


Happy wonderful Thanksgiving to everyone
Blessings and 18's, 

Susan Z





-Original Message-
From: bkbarney via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, Nov 19, 2015 8:27 pm
Subject: Re: [CMLHope] Test Day


Dear Susan,


Concerned to hear your news...I know you wanted to hear better..It's so hard 
when we hit an unexpected bump in the roadwhen are you coming back to see 
your doc? I am in town except for Dec. 12-19th...would love to meet you this 
time. And Greeniewill be in Fort Myers so hopefully can see you and your 
sweetie..and my other cml buddies who live down south...chemo brain...forgive 
me!.
Just
I have gone off everything...my BCR was good enough to take some time to 
cleanse my body...was just too sickwill go back on in a few 
weeks...enjoying GRAPEFRUIT!!! for a couple of weeks!.


Love to all and a happy and healthy Thanksgiving to each and everyone of you...


18's  and love, Beth



-Original Message-
From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Fri, Oct 30, 2015 8:26 am
Subject: Re: [CMLHope] Test Day


Hi all,


My bcr/abl results were not as great as I hoped.  Last time I was 
.012.almost to zero.  This time I expected to be zero, but alas I am up to 
.348.  So doc wants me to go to 300 mg bosulif, instead of 100 mg.  I am 
compromising and will go to 200 so I don't have to stay in the bathroom all 
day.  I was ready to get a local test next time and forego going to Chicago 
every 3 months.  Now she wants to see me in one month after I up the dose.  
Ugh!  So thankful I do have a wonderful doc even if I do decide myself on my 
dosage.  She does not put me down about it, and supports me in every way. 


Beth, keeping my fingers crossed for you and saying a prayer.  Marty, you are 
so loved and hope your kidney stuff is getting better.  Your pics were 
beautiful.   


18's and blessings,

Susan Z




-Original Message-
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, Oct 29, 2015 10:11 pm
Subject: Re: [CMLHope] Test Day



Yes since everything has been going on I had leave my home in PA empty for 
nearly two years, but let me tell you something about that crisp clean air and 
simply beautiful colors of all of the trees that you can see for miles. An 
example is route 97 which separates upstate NY from PA with the Delaware river 
in between them. Route 97 goes from Port Jervis all the way down to past 
Hancock NY, and is considered the most scenic road it the United States. Right 
near Port Jervis there is route 97 winding like a snake on the edge of the road 
and is about 1,000 feet above the Delaware River.


I have driven in that area and I wouldn't ever drive on it in the snow or at 
night. If by chance your ever there and I am in PA it is only right across the 
Robeling bridge which is actually a one lane wooden bridge only allowing one 
way of traffic then once it stops then the other way.  


I am wishing you well with your results.


Don't forget to let everyone know.


18's,


Marty







On Thu, Oct 29, 2

Re: [CMLHope] Hi john 11th month on ponatinib

['Susan Zimmerman' via CMLHope]

Hi Jeanie, I know you know that you are in the palm of His hand and He is 
watching over you. A great response for brain fog foibles is this"Yes, I am 
having a smooth transition into senility." Might as well laugh cuz it makes 
others laugh also.
The side pain is I'm sure hard to ignore. Why wait til January for a pet scan? 
Seems like it will cost you less if you get it this year due to deductibles, 
etc. Remember you are your best advocate...no one knows your body like you. 
Sounds like your numbers are tolerable. I had to increase my bosulif to 200 mg 
and doing just fine so far.
May we all be thankful in this season for the many blessings we all enjoy in 
this USA. I know I am thankful I don't have to hold down a j.o.b. anymore, but 
enjoy retirement. While my hubby still is working his bippy off! 
18's and blessings, Susan Z.


Sent from my Sprint phone



-- Original message--From: Marty GartenbergDate: Wed, Nov 11, 2015 
12:02 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Hi john 11th month 
on ponatinib
Oh Jeanie, Jeanie what am I going to do with you? Everything that you must be 
going through and I can say that I am familiar with most of this stuff. Been 
there and done that, but I just know that your going to be alright. 
It's the same for me and mostly everyone that has to go through any type of 
health problems, because they are usually frightened about what will happen. 
Now can I say that have I ever been frightened, and my answer is yes. However I 
just have to do whatever I need to do to keep myself going and so far no matter 
what I was put through I am still running around and still living, well so far 
I am. 
It's the attitude of people that really matters. A lot of people may not 
understand me or my attitude because of the way I keep my life in order. If I 
were to wander around with everything that I have already been through then How 
would my lief be?  I don't think that it would be as good as I would like it to 
be. Doesn't everyone understand why I always end any of my posts with 18's? 
It's because of living my life
Jeanie let me remind you, and by the way everyone else for that matter of a 
poem that I have already sent. And please if you will notice the very last word,
18's
Marty
EXPECT THE BEST, MINDOVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO 
HAVE SUCCESS ATANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU 
EXPECT THE WORSETHEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF 
YOU EXPECT THEBEST THEN THAT IS WHAT YOU WILL GET.WHAT WE HAVE TO LEARNTO DO IS 
TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT ANDNOT TO 
DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY.WHEN 
YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVESINTO THE 
AREA OF POSSIBILITY.EVERY GREAT THINGEVENTUALLY BECOMES POSSIBLE FOR YOU. MY 
BELIEF AT THE BEGINNING OF A DOUBTFULUNDERTAKING IS THE ONE THING THAT INSURES 
THE SUCCESSFUL OUTCOME...FOCUS...


On Wed, Nov 11, 2015 at 9:22 AM, 'Icandoallttc' via CMLHope 
 wrote:
Hi John and all.  Just checking in to see how you are doing.
I am in my 11th month of ponatinib.
I seem to be doing good. WBC have been a little high but onc didn't seem to 
care.
Now he worries about some nodes on lungs.
Might do pet scan first of year.  Have you had one?
Still have dry skin and bad pain under right ribs.  Have brain fog also.
I hope everyone is good.

My Motto: Faith and Pills
Jeanie 18,s
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Test Day

['Susan Zimmerman' via CMLHope]

Hi all,


My bcr/abl results were not as great as I hoped.  Last time I was 
.012.almost to zero.  This time I expected to be zero, but alas I am up to 
.348.  So doc wants me to go to 300 mg bosulif, instead of 100 mg.  I am 
compromising and will go to 200 so I don't have to stay in the bathroom all 
day.  I was ready to get a local test next time and forego going to Chicago 
every 3 months.  Now she wants to see me in one month after I up the dose.  
Ugh!  So thankful I do have a wonderful doc even if I do decide myself on my 
dosage.  She does not put me down about it, and supports me in every way. 


Beth, keeping my fingers crossed for you and saying a prayer.  Marty, you are 
so loved and hope your kidney stuff is getting better.  Your pics were 
beautiful.   


18's and blessings,

Susan Z




-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Thu, Oct 29, 2015 10:11 pm
Subject: Re: [CMLHope] Test Day



Yes since everything has been going on I had leave my home in PA empty for 
nearly two years, but let me tell you something about that crisp clean air and 
simply beautiful colors of all of the trees that you can see for miles. An 
example is route 97 which separates upstate NY from PA with the Delaware river 
in between them. Route 97 goes from Port Jervis all the way down to past 
Hancock NY, and is considered the most scenic road it the United States. Right 
near Port Jervis there is route 97 winding like a snake on the edge of the road 
and is about 1,000 feet above the Delaware River.


I have driven in that area and I wouldn't ever drive on it in the snow or at 
night. If by chance your ever there and I am in PA it is only right across the 
Robeling bridge which is actually a one lane wooden bridge only allowing one 
way of traffic then once it stops then the other way.  


I am wishing you well with your results.


Don't forget to let everyone know.


18's,


Marty







On Thu, Oct 29, 2015 at 6:31 PM, bkbarney via CMLHope 
 wrote:

Hi all,


Just saying hi! Wanted you all to know that I am thinking of you and sending 
everyone a big hug and happy fall wishes... I know some of you southern 
folks..will enjoy your 90 degree Florida temperatures coming down...but us up 
north are enjoying the beauty of fall..it's cold today, but should be back up 
in the 60's by SundayIndian summer.I just love it...


did BCR on Monday..waiting for results..then will decide plan for next few 
months...


love, hugs and 18's to all, 




Beth



-Original Message-
From: 'Icandoallttc' via CMLHope 
To: cmlhope 
Sent: Sun, Oct 11, 2015 1:07 pm
Subject: Re: [CMLHope] Test Day



Hi Beth 
I can never go off the meds either. My counts will shoot up fast. 
Good luck
❤️

My Motto: Faith and Pills
Jeanie 18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center


On Oct 11, 2015, at 1:43 AM, bkbarney via CMLHope  
wrote:



Dear Jeannie, Richard, Susan, Marty, et al...thanks very much for responding to 
my question. I am scared, but want to try something to help myself. We will see 
what Dr.Druker has to say. In the mean time, what I do know, having been off of 
sprycel for months at a time to deal with major surgeries several times, is 
that I always come out of remission, and quickly. I don't hold without the 
sprycel. Usually the cells are showing at very low numbers, but it means that 
without the agent that keeps them in check, cancer grows. I wish this were not 
so. And I know it's not for some lucky folks. Maybe with time, this will change 
for me. For now I am developing a plan..will keep you all posted. 


love and 18's Beth



-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Thu, Oct 8, 2015 5:56 am
Subject: Re: [CMLHope] Test Day



Hi Jeannie, Beth, Richard as well as everyone on this site,


I have a friend (not had a friend, and still have this friend) who had CML a 
little while after I had my transplant. At the time there were no TKI's but 
there were only two things available. One was a bone marrow transplant which 
was in it's infancy at the time and the other was Alpha interferon but on an 
early study basis which actually was a blind study. Depending on if those in 
this study would be receiving this Alpha Interferon or a placebo.


Even before my friend I had to chose the Interferon or the placebo in this 
blind study. I spoke with a lot of oncologists about what to do. However there 
were no concise answers because on one hand there was something that was still 
in a blind study and who would know if that would even be given to this patient 
or would the BMT be the way to go?


However, since there were no matching donors, but one, his 

Re: [CMLHope] Test Day

['Susan Zimmerman' via CMLHope]

Hi Beth dear,Hoping you realize you are not in danger by going off a 
tkiIt is so important for yr immune system to rebuild. So if both those 
things are true, why wait on going off? You know I was off all tki's for over 7 
yrsand here I am. I know everone is different but God is in charge of your 
life. I pray your personal peace is there first and foremost. Live choosing JOY 
as your portion. Hope to see you on the 22ndwaiting to hear. Best wishes!!!
Sent from my Sprint phone



-- Original message--From: Marty Gartenberg Date: Thu, Oct 8, 2015 7:56 
AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Test Day
Hi Jeannie, Beth, Richard as well as everyone on this site,
I have a friend (not had a friend, and still have this friend) who had CML a 
little while after I had my transplant. At the time there were no TKI's but 
there were only two things available. One was a bone marrow transplant which 
was in it's infancy at the time and the other was Alpha interferon but on an 
early study basis which actually was a blind study. Depending on if those in 
this study would be receiving this Alpha Interferon or a placebo.
Even before my friend I had to chose the Interferon or the placebo in this 
blind study. I spoke with a lot of oncologists about what to do. However there 
were no concise answers because on one hand there was something that was still 
in a blind study and who would know if that would even be given to this patient 
or would the BMT be the way to go?
However, since there were no matching donors, but one, his brother who refused, 
and I could never understand that, but since there were no other choices he had 
no other choice but to try that blind study. Well he was lucky enough to be 
accepted. And I have to tell you that he really suffered some really bad side 
effects for years afterwards. 
Eventually they were unable to detect any more CML, but he still refused to go 
off of the Alpha Interferon and I suppose this was a crutch in his life so he 
still remained on it for many years. So I guess that he finally decided to go 
off of it. Once that happened his life took a dramatic turn. No more side 
effects and no more CML, and he is still alive and doing remarkably well today. 
As far as me, well my only choice was the BMT because of two reasons. Since my 
white blood counts were at the time over 486,000 and doubtful that I would 
survive, but basically the same thing with the BMT but at least I had my sister 
as a donor who just happened to be a perfect HLA match. So I tried the BMT, and 
it worked.
But yet there is still more to this story and some of you might remember Zavie 
Miller and all three of us used to get together, and called ourselves The Three 
Musketeers. This was well after Zavie got to know Dr. Druker and he was started 
on STI-571 which when approved by the FDA turned into Gleevec. 
So after that we all turned into The Three Musketeers. All of this is ancient   
history but my point is that whether to go off or continue on the TKI's because 
you may be actually "cured" of CML but you may still hold the touch of the 
crutch. So you see that there are different strokes for different people.
Fortunately I don't have to make the choice because I already did and believe 
me I really did suffer, but in the end it was worth it.
Now knowing what I would do if my circumstances were different I think that I 
would be off these TKI's and live my life, and if something happens then you 
will have to deal with it, and you will. Remember a crutch is a terrible thing 
to have.
I spend a lot of time trying to help, and your all very special people to me as 
I am to you.
Those are my words of wisdom and please never forget what 18's stands for. It 
is life yours and mine!
18's
Marty  

i 
On Thu, Oct 8, 2015 at 12:24 AM, Richard H  wrote:
Just a quick glimpse about a med break.  The end of March when I went to the 
hospital with Vertigo, The short break I had on medicine did wonders for me.  
Found some I shouldn't have been taking, stopped some all together.  I have 
felt so much better that I would do it again under total control.  Worried? 
Yes, but I realized afterwards it should have been done earlier.

Richard H.  

On Wednesday, October 7, 2015 at 4:27:30 PM UTC-5, Beth wrote:
HI Jeannie and all, ...I am due for BCR abl testing so should get it in the 
next two weeks, results two weeks later...so I will update when I know 
more...Had a consult today at the Block Center here in Illinois.People tend to 
love him or hate him... I really like him. He thinks all my issues are sprycel 
related. Thinks I should go off everything and have drug holiday to give my 
autoimmune system a reststeroids briefly to try and lower cpk so I can move 
better without such a severe boomerang effect.  Back issues are no worse. 
That's good news from my endsince there have been several of my fellow 
warriors here who have lost there remissions 

Re: [CMLHope] Test Day

['Susan Zimmerman' via CMLHope]

Good news Richard#!!! So glad yr wife is better also. Relief!  18's? Susan z
Sent from my Sprint phone



-- Original message--From: bkbarney via CMLHope Date: Wed, Oct 7, 2015 
11:35 AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] Test Day
Dear Richard,Sounds like good news all the way around. Hope your counts 
continue to hold well and the November visit to the onc is a positive one! Your 
wife is healing well..slow and steady. Thanks for sharing the good 
newsKeeping you both in my thoughts and prayers. Beth



-Original Message-
From: 'Icandoallttc' via CMLHope >
To: cmlhope >
Sent: Wed, Oct 7, 2015 9:26 am
Subject: Re: [CMLHope] Test Day

Hi Richard and happy you are better.  I hope your wife will be home soon. 
Prayers always. 

My Motto: Faith and PillsJeanie 18,s Dx 1/2004. CML LeukemiaStarted Gleevec 
2/2004Started Tasigna  9/2009Started Sprycel 11/2009Started Ponatinib January 
2015Dr Balducci Moffitt Cancer Center
On Oct 7, 2015, at 12:01 AM, Richard H  wrote:

All is good at this house.  Saw Kidney Dr. and my tests have improved the last 
3 times.  Took my CBC and I am keeping my Hem. is holding at 10.  I hope it 
stays there until the end of Nov. when I visit my ONC.  

My wife is improving, and will see the Dr. Oct. 21st to see if she can start 
putting weight on the right side.  Shoulder seems to be healing nicely.  She 
has the healing knot on the shoulder and is feeding herself with her right hand 
and is raising the upper arm to almost shoulder height without pain.  We are 
hoping she can come home in Nov. when she can get out of the wheel chair and up 
and down without help.  Due to heart surgery and a pacemaker all I can due is 
call for help if she has a problem.

18's

Richard H. 
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Re: [CMLHope] Three months

['Susan Zimmerman' via CMLHope]

Angie,


So very very happy for you!  This will show you that even if you begin climbing 
again, (and we don't believe that), you will never get bad with CML and you 
will happily go to the great beyond because of something else!!!


18's and blessings,

Susan Zimmerman





-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Tue, Sep 29, 2015 10:38 pm
Subject: Re: [CMLHope] Three months



Angie,


So I see that your finally good to go \uD83D\uDC4C That's great!


18's,


Marty



On Tue, Sep 29, 2015 at 8:18 PM, ANGELYN ESDERS  wrote:


After 14+ years, I have been off Gleevec for 3 months. 
So far, so good... All blood counts are A-OK.
I am starting to feel a little braver about it now...
Angie in Canada


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Re: [CMLHope] to Beth

['Susan Zimmerman' via CMLHope]

We are only two hours from Chicago so we don't spend the night, but many 
thanks! How far are you from downtown? Could you private msg me yr. address? 
Sent from my Sprint phone



-- Original message--From: bkbarney via CMLHope Date: Tue, Sep 29, 2015 
10:09 AMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] to Beth
 I would love to see you Susan. What is your timing? do you need a place to 
stay while you are here? Let me know!  I definitely want to see you. From when 
to when will you be here? Thanks. Beth


-Original Message-
From: 'Susan Zimmerman' via CMLHope >
To: cmlhope >
Sent: Mon, Sep 28, 2015 3:07 pm
Subject: Re: [CMLHope] to Beth

Dear Beth again,I looked again and we come to Northwestern on Oct. 22nd. 
That's a Thursday. Let me know!
Sent from my Sprint phone
-- Original message--From: 'Susan Zimmerman' via CMLHope Date: Mon, Sep 
28, 2015 4:01 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] New results
Dear Beth,Sorry, I don't know what happened to September, but here i am a month 
later seeing your response to my response...lolAre you still having to wear 
compression bandages???  I am so sorry.  We come this Thursday to ChicagoI 
know you are near.Any chance we might get together for some mutual uplift?

Blessings,
Susan F. Zimmerman

-Original Message-
From: bkbarney via CMLHope >
To: cmlhope >
Sent: Wed, Aug 26, 2015 8:35 pm
Subject: Re: [CMLHope] New results

Dear Marcie, and Susan, Thanks for the kind words and prayers, much 
appreciated.I loved Paris's picture!!! what a cutie! I did try bosulif, for 2 
months, cancer walked right through it and grew. It is the only TKI that did 
not work for me, all the others do but I have significant side effects..while I 
am still working through the wall that I hit, I am uplifted by all the this 
group. I cannot thank each one of you that responded to me,  enough for taking 
the time and connecting. It has been a a life line during a difficult patch.
much love, Beth

-Original Message-
From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Mon, Aug 24, 2015 11:37 pm
Subject: Re: [CMLHope] New results

Dear Beth, I feel terrible about your lymphedema and certainly understand 
the misery when people stare and are rude. Please remember you are so beautiful 
inside and out and we are all pulling for you. You have been a MAJOR 
inspiration to me and so many others on here. Always a kind word to everyone. I 
am hoping you might have your doc think about bosulif for you. Everyone is 
different but sprycel seems to have more side effects than the others. We are 
all wishing for a complete turnaround for you!!! Keep your thoughts on things 
above and He will be there for you, too! Much love and prayers, Susan Z.  P.s.  
This is my dog Paris wishing you the best!  
  Sent from my Sprint phone  
   -- Original message--   From: margood18 via CMLHopeDate: Mon, 
Aug 24, 2015 2:15 PM   To: cmlhope@googlegroups.com;   Subject:Re: [CMLHope] 
New results   
Beth,   
  I'm so sorry you are having such a difficult time.  I knew that things 
were not easy for you but I did not realize just how tough.  I pray, too, that 
new drugs will come on the market to alleviate the terrible side effects so 
many experience.  I'm keeping you in my thoughts and prayers.  
  Marcie


-Original Message- 
From: bkbarney via CMLHope  > 
To: cmlhope  > 
Sent: Mon, Aug 24, 2015 12:23 pm 
Subject: Re: [CMLHope] New results 
 
   Dear Joyce,
 
 
 
 Thanks so much for your reply. I apologize for not responding sooner. I have 
not been feeling great. I go up and down, undetectable and showing but with 
very low numberswhat is considered a major molecular remission...with CML 
testing positive. My struggles have always been the side effects and y body's 
capacity to tolerate the drugs. They do work for me which is great!  this past 
year, post a botched lower back surgery and the subsequent second surgery to 
correct the fist one..seemed to erupt something in me and I am struggling with 
significant lymphedema/lipoedema. So, I am wearing compression garments, on 
legs, arms and torso except when I sleep.it's been debilitating in terms of 
movement..There is also no cure, like CL, just management...I don't know how 
this happened but it's here and I have to learn to live with it and manage 
it.while so many others have it so much worse, I try to stay positive, and be 
forward looking, with gratitude for what I do have, but this is taking a toll 
on my spirit. It feels lonely and isolating. People stare at you. it can be a 
cruel world. All I want is to feel well and strong in my body...I am doing 
everything I know to do..
 
 If anyone here has had this type of reaction from taking a TKI, specifically 
sprycel..please let

Re: [CMLHope] New results

['Susan Zimmerman' via CMLHope]

Dear Beth,
Sorry, I don't know what happened to September, but here i am a month later 
seeing your response to my response...lol
Are you still having to wear compression bandages???  I am so sorry.  We come 
this Thursday to ChicagoI know you are near.
Any chance we might get together for some mutual uplift?


Blessings,

Susan F. Zimmerman




-Original Message-
From: bkbarney via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Wed, Aug 26, 2015 8:35 pm
Subject: Re: [CMLHope] New results


Dear Marcie, and Susan, 
Thanks for the kind words and prayers, much appreciated.
I loved Paris's picture!!! what a cutie! I did try bosulif, for 2 months, 
cancer walked right through it and grew. It is the only TKI that did not work 
for me, all the others do but I have significant side effects..
while I am still working through the wall that I hit, I am uplifted by all the 
this group. I cannot thank each one of you that responded to me,  enough for 
taking the time and connecting. It has been a a life line during a difficult 
patch.


much love, Beth



-Original Message-
From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Mon, Aug 24, 2015 11:37 pm
Subject: Re: [CMLHope] New results


  
  
Dear Beth, I feel terrible about your lymphedema and certainly understand the 
misery when people stare and are rude. Please remember you are so beautiful 
inside and out and we are all pulling for you. You have been a MAJOR 
inspiration to me and so many others on here. Always a kind word to everyone. I 
am hoping you might have your doc think about bosulif for you. Everyone is 
different but sprycel seems to have more side effects than the others. We are 
all wishing for a complete turnaround for you!!! Keep your thoughts on things 
above and He will be there for you, too! Much love and prayers, Susan Z.  P.s.  
This is my dog Paris wishing you the best!
  


  
Sent from my Sprint phone  
 
  
  
   


   
-- Original message--
   
From: margood18 via CMLHope 
   
Date: Mon, Aug 24, 2015 2:15 PM
   
To: cmlhope@googlegroups.com;
   
Subject:Re: [CMLHope] New results
   


  
  Beth,   

   
   
I'm so sorry you are having such a difficult time.  I knew that things were not 
easy for you but I did not realize just how tough.  I pray, too, that new drugs 
will come on the market to alleviate the terrible side effects so many 
experience.  I'm keeping you in my thoughts and prayers.   
   

   
   
Marcie



-Original Message- 
From: bkbarney via CMLHope  > 
To: cmlhope  > 
Sent: Mon, Aug 24, 2015 12:23 pm 
Subject: Re: [CMLHope] New results 
 
 
  
Dear Joyce,
 
 
 
 Thanks so much for your reply. I apologize for not responding sooner. I have 
not been feeling great. I go up and down, undetectable and showing but with 
very low numberswhat is considered a major molecular remission...with CML 
testing positive. My struggles have always been the side effects and y body's 
capacity to tolerate the drugs. They do work for me which is great!  this past 
year, post a botched lower back surgery and the subsequent second surgery to 
correct the fist one..seemed to erupt something in me and I am struggling with 
significant lymphedema/lipoedema. So, I am wearing compression garments, on 
legs, arms and torso except when I sleep.it's been debilitating in terms of 
movement..There is also no cure, like CL, just management...I don't know how 
this happened but it's here and I have to learn to live with it and manage 
it.while so many others have it so much worse, I try to stay positive, and be 
forward looking, with gratitude for what I do have, but this is taking a toll 
on my spirit. It feels lonely and isolating. People stare at you. it can be a 
cruel world. All I want is to feel well and strong in my body...I am doing 
everything I know to do..
 
 If anyone here has had this type of reaction from taking a TKI, specifically 
sprycel..please let me know. It is clear, from my constantly elevated CPK which 
is rising, and the lack of healthy collagen  and muscle building capacity in my 
body that sprycel is inhibiting more than the protein that causes CML. I am 
hopeful for new drugs that will be developed in the future that might work 
better for me. I miss everyone and send love and 18's to all of you..big group 
hug!!!
 
 Beth 
  
  
 
 
  
 
 
  
 
 
-Original Message-  
 From: Joyce Mesnarich < joy...@htc.net>  
 To: cmlhope < cmlhope@googlegroups.com>  
 Sent: Sat, Jul 25, 2015 12:35 pm  
 Subject: Re: [CMLHope] New results  
  
  
   
 Thanks Beth,
 I think these TKIs are so new that they do not fully know all the 

Re: [CMLHope] to Beth

['Susan Zimmerman' via CMLHope]

Dear Beth again,I looked again and we come to Northwestern on Oct. 22nd. 
That's a Thursday. Let me know!
Sent from my Sprint phone



-- Original message--From: 'Susan Zimmerman' via CMLHope Date: Mon, Sep 
28, 2015 4:01 PMTo: cmlhope@googlegroups.com;Subject:Re: [CMLHope] New results
Dear Beth,Sorry, I don't know what happened to September, but here i am a month 
later seeing your response to my response...lolAre you still having to wear 
compression bandages???  I am so sorry.  We come this Thursday to ChicagoI 
know you are near.Any chance we might get together for some mutual uplift?

Blessings,
Susan F. Zimmerman

-Original Message-
From: bkbarney via CMLHope >
To: cmlhope >
Sent: Wed, Aug 26, 2015 8:35 pm
Subject: Re: [CMLHope] New results

Dear Marcie, and Susan, Thanks for the kind words and prayers, much 
appreciated.I loved Paris's picture!!! what a cutie! I did try bosulif, for 2 
months, cancer walked right through it and grew. It is the only TKI that did 
not work for me, all the others do but I have significant side effects..while I 
am still working through the wall that I hit, I am uplifted by all the this 
group. I cannot thank each one of you that responded to me,  enough for taking 
the time and connecting. It has been a a life line during a difficult patch.
much love, Beth

-Original Message-
From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Mon, Aug 24, 2015 11:37 pm
Subject: Re: [CMLHope] New results

Dear Beth, I feel terrible about your lymphedema and certainly understand 
the misery when people stare and are rude. Please remember you are so beautiful 
inside and out and we are all pulling for you. You have been a MAJOR 
inspiration to me and so many others on here. Always a kind word to everyone. I 
am hoping you might have your doc think about bosulif for you. Everyone is 
different but sprycel seems to have more side effects than the others. We are 
all wishing for a complete turnaround for you!!! Keep your thoughts on things 
above and He will be there for you, too! Much love and prayers, Susan Z.  P.s.  
This is my dog Paris wishing you the best!  
  Sent from my Sprint phone  
   -- Original message--   From: margood18 via CMLHopeDate: Mon, 
Aug 24, 2015 2:15 PM   To: cmlhope@googlegroups.com;   Subject:Re: [CMLHope] 
New results   
Beth,   
  I'm so sorry you are having such a difficult time.  I knew that things 
were not easy for you but I did not realize just how tough.  I pray, too, that 
new drugs will come on the market to alleviate the terrible side effects so 
many experience.  I'm keeping you in my thoughts and prayers.  
  Marcie


-Original Message- 
From: bkbarney via CMLHope  > 
To: cmlhope  > 
Sent: Mon, Aug 24, 2015 12:23 pm 
Subject: Re: [CMLHope] New results 
 
   Dear Joyce,
 
 
 
 Thanks so much for your reply. I apologize for not responding sooner. I have 
not been feeling great. I go up and down, undetectable and showing but with 
very low numberswhat is considered a major molecular remission...with CML 
testing positive. My struggles have always been the side effects and y body's 
capacity to tolerate the drugs. They do work for me which is great!  this past 
year, post a botched lower back surgery and the subsequent second surgery to 
correct the fist one..seemed to erupt something in me and I am struggling with 
significant lymphedema/lipoedema. So, I am wearing compression garments, on 
legs, arms and torso except when I sleep.it's been debilitating in terms of 
movement..There is also no cure, like CL, just management...I don't know how 
this happened but it's here and I have to learn to live with it and manage 
it.while so many others have it so much worse, I try to stay positive, and be 
forward looking, with gratitude for what I do have, but this is taking a toll 
on my spirit. It feels lonely and isolating. People stare at you. it can be a 
cruel world. All I want is to feel well and strong in my body...I am doing 
everything I know to do..
 
 If anyone here has had this type of reaction from taking a TKI, specifically 
sprycel..please let me know. It is clear, from my constantly elevated CPK which 
is rising, and the lack of healthy collagen  and muscle building capacity in my 
body that sprycel is inhibiting more than the protein that causes CML. I am 
hopeful for new drugs that will be developed in the future that might work 
better for me. I miss everyone and send love and 18's to all of you..big group 
hug!!!
 
 Beth 



  -Original Message-  
 From: Joyce Mesnarich < joy...@htc.net>  
 To: cmlhope < cmlhope@googlegroups.com>  
 Sent: Sat, Jul 25, 

Re: [CMLHope] CBC results 7/17

['Susan Zimmerman' via CMLHope]

Great news, Greenie!  Sorry to have missed your trip to Chicago this time.  
We've all been very busy enjoying our brief time without snow, I guess.  Enjoy 
summer, dance today!  I am going to get so healthy with the new discoveries 
I've learned that you all will be blown away!

18's and happiness,  (Life and happiness)



Susan F. Zimmerman





-Original Message-
From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sun, Jul 19, 2015 5:00 pm
Subject: Re: [CMLHope] CBC results 7/17


 
Great news Greenie!! 
 
I is what we all want to hear.  Good to hear from you.  
 
Richard I got my hmg up to 14 but it dropped to 13.  It had been about 11 for a 
long time.  
 
These counts are a battle that's for sure.  
 
Happy Sunday every one.   
  
My Motto: Faith and Pills  
Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s
Dx 1/2004. CML Leukemia   
   
Started Gleevec 2/2004   
   
Started Tasigna  9/2009   
   
Started Sprycel 11/2009   
   
Started Ponatinib January 2015   
   
Dr Balducci Moffitt Cancer Center   
  
 
 
  
On Jul 19, 2015, at 12:17 AM, Richard H   rbhuffm...@gmail.com wrote:  
  
 
 
  
   
Thanks Greenie. It is great to hear that you are at that wonderful  O.  I 
agree all labs are different but This is the same one week after week.  I 
should be about there after the last one was .2%.  There will be lots of 
talking in about 5 weeks, when I see the ONC.  My fluid levels stay about 1 all 
the time.  I have had 5 by-passes (24 years), added a 2 prong pacemaker (about 
5 years ago) because scar tissue.

On Saturday, July 18, 2015 at 6:50:33 AM UTC-5, greenie wrote:
  
  
After starting Gleevec in Jan. of 2000 my RBC have always been on the 
low side 3.64 and the norm on the low side is 4.20 to 5.80.  No matter what lab 
you go to their counts are always different.  By the way when I went to Chicago 
the first week in June for my blood work they called me a few days later to 
tell me the no cancer cells are showing up which is nice to here.  I am having 
a problem with fluid down around my feet and ankles so the NP wanted me to get 
a Echocardiogram and the test results I'm down loading for you all to see.  
Other wise I'm doing find.  Everyone take care of yourselfs.   



Greenie   

Club member 48   



 
In a message dated 7/18/2015 12:27:02 A.M. Eastern Daylight Time,  
rbhuf...@gmail.com writes:
 


After all the weeks working to get my RBC up to 12.3 it has started 
dropping again. Two weeks ago it was at 12.0, and today's count was down to 
11.1. So it appears that I will be playing with attempting to keep my counts 
up.  I will have my next BCR-ABR 2nd week of Aug and get the results 2 weeks 
later. 


   

Richard H.   


   
  
 
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Re: [CMLHope] Platelets

['Susan Zimmerman' via CMLHope]

Pete,
When I was at Moffitt from 2005 til 2007, I saw Dr. Javier Panilla.  He is 
GREAT!!!

18'S,

Susan F. Zimmerman




-Original Message-
From: Pete Pabon nyc...@hotmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Jun 15, 2015 12:36 am
Subject: RE: [CMLHope] Platelets


 
  Jeanie,who do you see at Moffitt?  
   
   
   
   

Date: Sun, 14 Jun 2015 20:23:18 -0700
From: rbhuffm...@gmail.com
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Platelets


 
I do understand Skip.  I have a sister that has been anemic all her life, and 
she is doing fine at 5.  I have been having problems every time I get close 
7.9.Just again shows how we each find our spot that works for us. 
 
  
 
 
Richard H.  
  
On Sunday, June 14, 2015 at 8:08:33 AM UTC-5, easyskip_2002 wrote: 
 
  
   

 

I have had very low platelets and ANC and RBC and plus some others plus high 
Ferritin counts over 7000 most weeks I have critical platelets and white counts 
of 1.2 or up to 2.01  neut 0.20 yet with no meds I have 0.8 log reduction. I 
fell fine been doing this for 37 years I tell you this as I want all to know 
Low counts should looked but not to spoil your day  Zevie was astounded when I 
send him on of my blood reports with 1.0 white 88 RBC 0zero platelets  ANC of 
0.20  
hooe this helps  
  
Skip Dx 1977   
   Sent from Yahoo Mail on Android   

   
 
  
   

From:'Icandoallttc' via CMLHope 
cml...@googlegroups.com
Date:Tue, May 19, 2015 at 9:01 AM
Subject:Re: [CMLHope] Platelets

   

I also have problems with platelets and WBC.   They go way too high.  Only on 
Tasigna did they drop too Lowe.  Go figure.  We are all unique in how we 
respond to the tkis.  
   
Moffitt tomorrow.  I am hoping for good results.  
   
5 months on ponatinib.  

Prayers  Blessings Jeanie 18,s
Dx 1/2004

Started Gleevec 2/2004

Started Tasigna  9/2009

Started Sprycel 11/2009

Started Ponatinib January 2015
   
   

On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan 
graga...@gmail.com wrote:

   
   

 
I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. 
Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per 
day and now taking 50mg per day. One moth of Sprycel medication and two months 
rest for platelet recovery. This is how current medication is going on. I take 
papaya leaf tea everyday to improve platelets.  
 
 
  
  
On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS
esd...@rogers.com wrote:   
   

 
  
Does anyone have problems maintaining their platelet level? 
 
  
Mine fall down to almost ZERO, which is a dangerous place to be. I am covered 
with big purple bruises and petechiae and look like I have been in a bar fight. 
Even a light scratch on my skin brings the blood to the surface. It is called 
Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions  
last week.  
  
My confidence waivers a little as it seems they don't really know what to do 
about me. I have lots of complications. More specialists on the horizon, but 
every step forward is followed by 3 steps back. I am on massive prednisone for 
the moment.  
  
Can anyone share  info on this?  
  
Angie in Canada  
  
Gleevec pioneer since 2001  
 

 
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Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.

['Susan Zimmerman' via CMLHope]

Marty,


Your friend knew because God is using him as a prophetic voice through His Son 
Jesus Christ.  He uses me in the same way at times.
I have seen many miracles in my life, and I thank God for it.  When I prayed 
for a lady in Malaysia who had a withered hand, it was made whole before my 
very eyes.  That was because she believed God could do it.  The Word of God is 
our key to miracles and all of life for direction.  

May your days be alert to continuing to grow spiritually, as none of us ever 
arrive.  I strive to be His servant, as that is my purpose in life.  I pray 
that all of us on this CML journey will live up to the New Testament's 1 
Corinthians 14:12 which says, Even so you, since you are zealous for spiritual 
gifts, let it be for the edification of the church that you seek to excel.  
Our differences in beliefs will possibly be there, but He wants us all to 
prosper and be in health, even as our souls prosper.  


18's and blessings,



Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5



-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: cmlhope cmlhope@googlegroups.comI have 
Sent: Thu, Jun 25, 2015 12:29 am
Subject: Re: [CMLHope] Humor is the spice of life. When your laughing your not 
crying.


 
Hi Susan,  
   
  
  
Let me remind you of something. There is only one GOD and no matter what 
religion we are HE is here for everyone.   
  
   
  
  
   
  
  
What you give so shall you receive. And i have proof of it.  You know what i am 
doing here, and it is what i do ever since i made that promise to GOD.   
  
  
   
  
  
I think that i have told this story before and if i did then i would like to 
tell it again.  
  
   
  
  
Do you believe in Miracles? Well i do ever since i was still alive when i had 
my bone marrow transplant in 1989. There were four plastic bubbles in Mount 
Sinai Hospital at the time, and there were four patients (myself included) in 
each one. All of them died but me. Why? Many have told me that i have a purpose 
and i do know that i was placed on this earth to be able to use that purpose 
and help people.  
  
   
  
  
In turn i have been helped by a lot of people. That is how it works, to give is 
to receive. Something that i am very curious about was when i came for dialysis 
several months ago there was a Reverend in the waiting room with his wife 
because she was also on dialysis at the same time that i was.  
  
   
  
  
I know both of them for four years and have become friendly with them. The 
Reverend and i would always talk to each other every time that we were there. 
One Monday morning i was waiting in the waiting room waiting to be called into 
the dialysis clinic to start my dialysis.   
  
   
  
  
When suddenly he, the Reverend comes over to me and says, Marty your going to 
have a miracle preformed today I asked him what he meant and he said you will 
see shortly Okay, i was just then called to start my dialysis treatment. I was 
walking toward the clinic and maybe five seconds had passed. I didn't even get 
the chance to even touch the door knob when the phone in the office rings and 
the kidney transplant coordinator from The Cleveland Clinic asks to speak to 
me.  
  
   
  
  
I go over to the phone and she tells me that a kidney has been found for me and 
it is a perfect HLA match for me.  
  
   
  
  
I turned facing the Reverend and said did you hear what was just told to me? He 
said, i already know. How could he have known. I guess that GOD must have 
picked him to be HIS receiver for me???  
  
   
  
  
So Susan, everything happens for a reason...  
  
   
  
  
18's  
  
   
  
  
Marty  
 
 
  
  
On Wed, Jun 24, 2015 at 10:48 PM, 'Susan Zimmerman' via CMLHope
cmlhope@googlegroups.com wrote:   
   
Hey, just found this, Marty!  Thanks for posting the whole Psalm.  It is a 
great one for encouragement, and I know it will bless everyone here on this 
site.  I truly do pray it for you and everyone!  P.S.  VERSE 16 IS MY SCRIPTURE 
TO STAND ON, and  I INVITE EVERYONE TO CLAIM IT AS THEIR OWN..With long 
life will I satisfy you and show you my salvation!  I've been using this 
scripture since February 14, 2010 when diagnosed, because God gave it to me as 
a great great comfort.  In other words, if you take it as your own internally, 
He will make it come to pass!  You will live a long life and He will show you 
His salvation!  
  
  
  
  I do not want to offend anyone with being spiritual, as I was warned when 
beginning on here that it is for all faiths.  But the whole psalm is an uplift 
for Jewish and Christian believers.  God bless you all!  I will not keep 
posting scripture as to not offend anyone.  But I hope it blesses most of you!
 

   18's,   
   
   
 
Susan F. Zimmerman

Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.

['Susan Zimmerman' via CMLHope]

Hey, just found this, Marty!  Thanks for posting the whole Psalm.  It is a 
great one for encouragement, and I know it will bless everyone here on this 
site.  I truly do pray it for you and everyone!  P.S.  VERSE 16 IS MY SCRIPTURE 
TO STAND ON, and I INVITE EVERYONE TO CLAIM IT AS THEIR OWN..With 
long life will I satisfy you and show you my salvation!  I've been using this 
scripture since February 14, 2010 when diagnosed, because God gave it to me as 
a great great comfort.  In other words, if you take it as your own internally, 
He will make it come to pass!  You will live a long life and He will show you 
His salvation!


I do not want to offend anyone with being spiritual, as I was warned when 
beginning on here that it is for all faiths.  But the whole psalm is an uplift 
for Jewish and Christian believers.  God bless you all!  I will not keep 
posting scripture as to not offend anyone.  But I hope it blesses most of you!


18's, 


Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5  ANOTHER GOOD ONE THAT I CLAIM FOR MYSELF



-Original Message-
From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sat, Jun 20, 2015 9:58 am
Subject: Re: [CMLHope] Humor is the spice of life. When your laughing your not 
crying.


 
Loved it Marty!! 
 
Thanks.  I love psalms 46 also!!!   
  
Prayers  Blessings Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s  
Dx 1/2004  
  
Started Gleevec 2/2004  
  
Started Tasigna  9/2009  
  
Started Sprycel 11/2009  
  
Started Ponatinib January 2015  
  
Dr Balducci Moffitt Cancer Center  
 
 
  
On Jun 19, 2015, at 8:58 PM, Marty Gartenberg   wa2...@gmail.com wrote:  
  
 
 
  
   

Thank you for praying Psalm for me. I am enclosing a copy so that every one can 
read it.

 


 


 
Psalm 91
 
  
1 
Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.[a]

2 
I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
 
 
  
3 
Surely he will save you
from the fowler’s snare
and from the deadly pestilence.

4 
He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.

5 
You will not fear the terror of night,
nor the arrow that flies by day,

6 
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.

7 
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.

8 
You will only observe with your eyes
and see the punishment of the wicked.
 
 
  
9 
If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,

10 
no harm will overtake you,
no disaster will come near your tent.

11 
For he will command his angels concerning you
to guard you in all your ways;

12 
they will lift you up in their hands,
so that you will not strike your foot against a stone.

13 
You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
 
 
  
14 
  
“Because he[b] loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.

  
15 
  
He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.

  
16 
  
With long life I will satisfy him
and show him my salvation.”
 
 
  
18's,
  


 
 
  
Marty
 

   
   


On Fri, Jun 19, 2015 at 5:16 PM, 'Susan Zimmerman' via CMLHope  
cmlhope@googlegroups.com wrote: 
 
  Hey Marty,
Please notice that I also say blessings with the 18's  Life and blessings.  I 
wish you many, many blessings.  I also pray Psalm 91 over you!!!  You are 
precious, and so is everybody else on here.  I just usually cannot e-mail as 
often as all you guys do!  I feel like I never get anything done anyway, what 
with fb to keep up with, lol.  Gotta keep up with facebook!  I wish more of you 
would join that...???   




18's and Blessings to all,
 
 
  
Susan F. Zimmerman 
  
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5 
 
 
 
 
 -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 
  
 To: cmlhopecmlhope@googlegroups.com   
 Sent: Fri, Jun 19, 2015 4:49 pm   
 Subject: Re: [CMLHope] Humor is the spice of life. When your laughing your not 
crying.   


 
  
 Dear Susan

Re: [CMLHope] Stopping Gleevec

['Susan Zimmerman' via CMLHope]

Dear Angie,


I stopped gleevec after being on 400 mg for 2 yrs and 2 mos.  It was because I 
had a brain bleed, then another.  I decided back in 2007 before it was popular 
that I'd rather take my chances and keep myself monitored by blood tests than 
die of a stroke.  I did have a big stroke then in 2010.  So I went for 7 yrs 
without a tki, and my IS numbers were up to 23 when my doc and I decided to 
start bosulif at 100 mg.  This was at Northwestern Medical in Chicago.  I am 
doing fine on it.  It took about 9 mos. to come into remission and my doc would 
have preferred to have me on a higher dose.  I am convinced they are all 
finding out that many patients don't need the high dosages they are 
prescribing.  Don't be afraid to go off!!!  They can monitor you and do 
something quick if you go up fast, which you probably will not.  Trust me, the 
benefits outweigh any fear.  No fear, Angie, no fear!


18's,

Susan F. Zimmerman




-Original Message-
From: Giora Sharf gio...@inter.net.il
To: cmlhope cmlhope@googlegroups.com
Sent: Wed, Jun 17, 2015 2:35 am
Subject: RE: [CMLHope] Stopping Gleevec


 
  
Hi Angie
  
We have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 
10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without 
treatment doing very well, monthly PCR are all in deep MR4.5 response.
  
I fully understand your concern, I had the same issues and didn’t agree to stop 
for couple of years. When I saw the data indicating that all the patients who 
stop and relapse (about 50-60 %) respond well when they restart treatment, I 
agreed to stop. I also didn’t have severe side effects on Glivec, but I am 
happy to be drug free and do very strict monthly or 6 weeks monitoring. Please 
remember if you decide to stop- the most important thing is a very strict 
monthly PCR on international scale. (IS)
  
Good luck whatever you decide
  
Giora
  
 
  
   

From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of 
ANGELYN ESDERS
Sent: Wednesday, June 17, 2015 4:03 AM
To: cmlhope@googlegroups.com
Subject: [CMLHope] Stopping Gleevec
   
  
  
 
  
   

I just received an email from my oncologist telling me that it is safe for me 
to stop Gleevec for 3 months.
   
   

I started Gleevec in January 2001, and reached cytogenic remission in July 
2001. 
   
   

I've continued on 300mg per day.
   
   

I was in the study for 12  years.
   
   

I feel like it is my safety net between wellness and reoccurrence of CML.
   
   

I am almost afraid to stop it. I no longer have any side effects from it.
   
   

Who has stopped Gleevec, and what have you experienced as a result of doing so?
   
   

Thanking you all for your input...
   
   

Angie in Canada
   
  
  
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Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.

['Susan Zimmerman' via CMLHope]

Hey Marty,
Please notice that I also say blessings with the 18's  Life and blessings.  I 
wish you many, many blessings.  I also pray Psalm 91 over you!!!  You are 
precious, and so is everybody else on here.  I just usually cannot e-mail as 
often as all you guys do!  I feel like I never get anything done anyway, what 
with fb to keep up with, lol.  Gotta keep up with facebook!  I wish more of you 
would join that...???


18's and Blessings to all,



Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5



-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Jun 19, 2015 4:49 pm
Subject: Re: [CMLHope] Humor is the spice of life. When your laughing your not 
crying.


 
  
Dear Susan,  
  
   
  
  
I'm glad to see that you are using 18's at the end of your posts. As you 
already know it's meaning is life and that is what I pray for everyone.  
  
   
  
  
18's,  
  
   
  
  
Marty  
 
 
  
  
On Fri, Jun 19, 2015 at 11:18 AM, 'Susan Zimmerman' via CMLHope
cmlhope@googlegroups.com wrote:   
   
hahahaha, Marty.  I knew your talents were endless!  
  
  
  
Jeannie, so excited for you!
   
18's and blessings,   

Susan F. Zimmerman   



   
   
   

-Original Message- 
 From: Marty Gartenberg  wa2...@gmail.com 
 To: CMLHope  CMLHope@googlegroups.com 
 Sent: Fri, Jun 19, 2015 12:29 am 
 Subject: [CMLHope] Humor is the spice of life. When your laughing your not 
crying. 
  
 
   
   

 
   

 This is a little spicy but rather funny.

 By now you must all know me. I have been asked many times how I can have an 
operation for a kidney transplant as well as a bone marrow transplant some 26 
years and still be able to spread humor. As I mentioned humor is the spice of 
life and without it where would all of us be?

 


 over the years i have learned how to control my frustrations as well as any 
anxieties. and knowing that, it just makes my life a little better.

 


 So here it is and I hope that no one will be offended. I would hope that you 
read it and laugh. Remember that when your laughing your not crying.

 


 18's to each and every one of you. Please keep on posting your good news, I 
just love to hear it. In fact when your feeling better then so do I. We are 
just like a close knit family...

 


 Again 18's

 


 Marty

 


 PS now you all know what I recently went through. I was always telling jokes 
to the nurses and this also made me feel much better. In fact I was out of the 
hospital in only three days after my kidney transplant. Everyone was amazed.


 


   
 Okay here it is. 
 
  
 I was called by our local fire rescue department and they told me that you 
forwarded my name and circumstances to them. It seems that they want to hire me 
because they found out that i had a kidney transplant from a twenty year old 
man. He must have drank a lot of beers 
 
   
 
 I also had my prostate reamed out so i would be able to pee. Yes indeed i can 
now pee just like when i was a kid drinking at Moriarty's bar on Flatbush Ave 
in Brooklyn 
 
   
 
 After drinking 7 or 8 beers with a lemon slice in each of them i got the urge 
to take a bathroom break and pissed my brains out. As i matured i learned just 
how to be able to control it to put this to use but never got the chance until 
now. 
 
   
 
 Well, it seems to have happened again. So i wondered why the fire department 
called me until they explained why they wanted to hire me. Besides knowing 
about the transplant and prostate operation, i was going around Palm Beach 
County resort areas including most of the federal governments national parks 
just for fun.  
 
   
 
 What they found out was there were a lot of complaints about me pissing on the 
peoples camp fires and putting them out. So i guess they wanted some of my 
services. What they told me was that since i now have a powerful stream 
whenever i urinate they wanted to hire me whenever there was a high riser fire

Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.

['Susan Zimmerman' via CMLHope]

hahahaha, Marty.  I knew your talents were endless!


Jeannie, so excited for you!  

18's and blessings,

Susan F. Zimmerman



-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: CMLHope CMLHope@googlegroups.com
Sent: Fri, Jun 19, 2015 12:29 am
Subject: [CMLHope] Humor is the spice of life. When your laughing your not 
crying.


 
  
This is a little spicy but rather funny.  
  
By now you must all know me. I have been asked many times how I can have an 
operation for a kidney transplant as well as a bone marrow transplant some 26 
years and still be able to spread humor. As I mentioned humor is the spice of 
life and without it where would all of us be?  
  
   
  
  
over the years i have learned how to control my frustrations as well as any 
anxieties. and knowing that, it just makes my life a little better.  
  
   
  
  
So here it is and I hope that no one will be offended. I would hope that you 
read it and laugh. Remember that when your laughing your not crying.  
  
   
  
  
18's to each and every one of you. Please keep on posting your good news, I 
just love to hear it. In fact when your feeling better then so do I. We are 
just like a close knit family...  
  
   
  
  
Again 18's  
  
   
  
  
Marty  
  
   
  
  
PS now you all know what I recently went through. I was always telling jokes to 
the nurses and this also made me feel much better. In fact I was out of the 
hospital in only three days after my kidney transplant. Everyone was amazed.  
  
   
  
  

Okay here it is.   
   

I was called by our local fire rescue department and they told me that you 
forwarded my name and circumstances to them. It seems that they want to hire me 
because they found out that i had a kidney transplant from a twenty year old 
man. He must have drank a lot of beers   
   

   
I also had my prostate reamed out so i would be able to pee. Yes indeed i can 
now pee just like when i was a kid drinking at Moriarty's bar on Flatbush Ave 
in Brooklyn
   

   
After drinking 7 or 8 beers with a lemon slice in each of them i got the urge 
to take a bathroom break and pissed my brains out. As i matured i learned just 
how to be able to control it to put this to use but never got the chance until 
now.   
   

   
Well, it seems to have happened again. So i wondered why the fire department 
called me until they explained why they wanted to hire me. Besides knowing 
about the transplant and prostate operation, i was going around Palm Beach 
County resort areas including most of the federal governments national parks 
just for fun.
   

   
What they found out was there were a lot of complaints about me pissing on the 
peoples camp fires and putting them out. So i guess they wanted some of my 
services. What they told me was that since i now have a powerful stream 
whenever i urinate they wanted to hire me whenever there was a high riser fire. 
  
   

   
Anything around ten stories i would be called to the fire scene and take out my 
penis, aim it upward and put out that ten story fire. My stream was so powerful 
that it would actually break the windows to let in my pee. They also made me 
aware of the fact that if i squeeze a lot i could actually make it up to 
another two stories. Now i don't think that there are that many high riser 
buildings in palm beach county but it was nice to know anyway.   
   

   
Now since they already have their hoses out then i can keep filling up and 
continue again and again. By the way whenever i pee into the toilet i make 
dents in the porcelain toilet just like hale hitting a car window. I may want 
to use what is called a condom valve when i am at home to avoid buying and 
replacing new toilets.   
   

   
I want to thank you for bringing up my name and circumstances. This could be a 
very lucrative job. It's nice to be wanted   
   

   
You see that is what friends are for.   
  
 
  
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Re: [CMLHope] Marty's Post on CML2

['Susan Zimmerman' via CMLHope]

I am rejoicing with you, Marty!!!  And praying.


Love and hugs,

Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5



-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Apr 21, 2015 8:50 pm
Subject: Re: [CMLHope] Marty's Post on CML2


 
Thank you Beth.  
   
  
  
I am trying to do a lot of exercise to try and get back into shape. It is 
working little by little but always moving forward,  
  
   
  
  
On May 7th i will have another operation on my prostate to make it be able to 
pass urine. I have had a urine catheter in me for more then seven weeks because 
of my enlarged prostate. That seems to be the worst thing that someone can go 
through and i can't wait until it comes out and the operation to my prostate is 
over with.  
  
   
  
  
18's  
  
   
  
  
Marty
 
 
  
  
On Tue, Apr 21, 2015 at 5:19 PM, bkbarney via CMLHope
cmlhope@googlegroups.com wrote:   
   
Marty, It's soo good to hear from you...and know how you are 
doing...sounds like you are making slow and steady progresswalking 
outside.building up your stamina...sounds like a BIG operation...and you 
came through well I am so happy...prayers answered...may everyone have a 
good week ahead...your email made mine!! :) Beth
 
 
  
-Original Message-  
 From: Richard H   rbhuffm...@gmail.com  
 To: cmlhope   cmlhope@googlegroups.com  
 Sent: Mon, Apr 20, 2015 11:05 pm  
 Subject: [CMLHope] Marty's Post on CML2  
   
   

 
  
  
 
  
  
 
  thank you Ester and everyone else. You are all such nice people. This 
is a family, and we have grown even closer as we get to know one and other. 

 
  
  
 
  I continue to get a little better as the days go by. Mostly weakness 
in the core of my midsection but that is where i was opened up. Just to let you 
know when a kidney is transplanted it does not go in your lower back but rather 
in your groin because they want good blood flow going directly to it. They 
actually use your abdominal aorta and a large vein. And that is why i have an 
incession from the right side of my abdomen to the other side of my abdomen. So 
it is a healing process that requires me to do a lot of physical exercises. 

 
  
  
 
  I have been going outside with my walker and someone always watching 
me because if i fall then it will be very bad and set me back. Every day i try 
to walk just a little more then the day before and it makes me out of breath so 
i stop and rest for a minute or so then keep on going. The whole trick to this 
is to put your mind into a stage of knowing the more you walk or do any 
exercise the better your going to feel once your finished and take a rest.  
   
 
  
  
 
  I also have a physical therapist that comes here and we do even more 
exercise, so it is really helping me to recover but it is a slow process
  
 
  
  
 
  18's to everyone 
 
  
  
 
  Marty  
 
  
  
 
  Thanks for the update. Nothing like getting outside for a bit to 
Nature to help lift your spirit.   
 
  
  
 
  Richard H. 
 
  
  


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Re: [CMLHope] Checking in/ to all my CML friends

['Susan Zimmerman' via CMLHope]

Hi Joyce,
So sorry it took me this long to answer you.  I've been avoiding e-mails cuz 
been real busy.  Yes, I did have a liver enzyme jump about the third month on 
bosulif myself, just taking 100 mg.  But they said it was just slightly above 
normal, and the next month it was back in normal range.  I am so glad I am also 
on a low dose!  It also took me 6 months to get in remission.   So glad Wayne 
got off sprycel after the plural effusion.  That stuff scares me!  Keep me 
posted about his enzymes.


So do you mind telling me what town you guys live in?  Just curious, no big 
reason.  It is farther than I thought we were, but close cuz of this group for 
sure. :-)  



18's and No Stress,

Susan F. Zimmerman




-Original Message-
From: Joyce Mesnarich joy...@htc.net
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Apr 3, 2015 1:15 am
Subject: Re: [CMLHope] Checking in/ to all my CML friends


Hi, Susan 
We live on the western edge of IL, about 50 miles south of St Louis, MO, across 
the great Mississippi.  So we are completely across the state of IL and half of 
IN away from you.  But this group makes us close.  Right? 
 
We don't know yet if bosulif is working for Wayne.  He has an appointment to 
see Dr Talpaz on April 16 in Ann Arbor and we will find out a few weeks after 
that about the PCR.  They have had him getting blood tests every two weeks and 
they just called today about his last blood report and were concerned about a 
sudden big rise in his liver enzymes.  Don't know yet what they are thinking 
but it is scary.  He has tolerated bosulif very well, but now this.  Back on 
the roller coaster. 
 
  
 
 
I don't know why they put Wayne on a low dose.  After he had a bad reaction to 
Gleevec, they put him on Sprycel at 50 MG, also a low dose.  But it put him in 
major molecular in about six months.  Then he got pleural effusion and they 
took him off Sprycel.  In 3 months his numbers were rising quickly and he 
started bosulif the end of January.  You were very fortunate to have gone 7 
years without TKIs.  Have you ever had any issues with liver enzymes being out 
of bounds?  Anybody else on this site have liver issues? 
 
  
 
 
I hope you get a good report on the 23rd. 
 
 
 
   Joyce in IL 
 
  
 
 
  
 
 
  
 
 
  
   
On Apr 2, 2015, at 4:55 PM, 'Susan Zimmerman' via CMLHope wrote:   
   
   
Hi Joyce and Wayne,  
  
  
  
Enjoyed your encouragement for the people below.  Just wanted you to know I'm 
also on 100 mg of bosulif since last April 30th, and doing quite well!  Last 
test was done 3 months ago, but it was a fakeout as they got no results cuz it 
was botched.  So I opted to wait 3 more months to go back, as we had spent a 
lot of money to go into Chicago and do some fun things.  I go back I think on 
April 23rd.  My last check I was in remission but not down to zero quite yet.  
It's going to be exciting to hear the good news when you get it that his counts 
are going down.  Do you know what they are now?  Where in southern Illinois do 
you live?  We are in Granger, IN, top middle of Indiana, about 2 hrs 20 min. 
from downtown Chicago if no traffic.   
  
  
  
  
I had to choose between Dr. Talpaz and Dr. Altman from recommendations by my 
old doc in Fla. at Moffitt.(We moved back home to Indiana in 2010 from Fla.)   
I went 7 yrs and 2 mos without any medication after being on gleevec for 2 
years because I had several brain bleeds and didn't want to die from 
thatlol  So I defied the docs and said no med until I go out of remission.  
I never came out of cellular remission, but counts were 23 INT'l scale when I 
began bosulif.  I told them I wanted the lowest dose, and it's working!  Why is 
Wayne on the lowest dose again?  I know you've told me, but I forget! (chemo 
brain?)  
   
   
Many blessings and Happy Easter,   

Susan F. Zimmerman   



   
   
   
-Original Message-   
 From: Joyce Mesnarichjoy...@htc.net   
 To: CMLHopeCMLHope@googlegroups.com   
 Sent: Thu, Mar 19, 2015 11:53 pm   
 Subject: [CMLHope] Checking in/ to all my CML friends   


 
Haven't posted for a week or so, but I have been monitoring the site.  Sherri,
you said it is getting warmer in Northern Illinois and the snow is beginning to
melt.  I guess you are planning on sending it down to us in Southern Illinois. 
LOL  We will all feel better when it gets warmer and the sun shines
more.

Jeanne, so sorry to hear that you are still having ear  pain.  Stay on
it.  You have been through a lot lately and I suppose you have put this ear
thing at the bottom of the list.  So go for it now!  Glad to hear you are
tolerating ponatinib.  

Greenie, glad to know your colonoscopy had a good
outcome.  My husband has been through 2 of them in less than 2 years.  They
insist he has blood in his stool, but both times

Re: [CMLHope] Today's Test

['Susan Zimmerman' via CMLHope]

YAY RICHARD!!!  So glad for you.


18's and delighted,

Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5



-Original Message-
From: Richard H rbhuffm...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Apr 3, 2015 12:28 am
Subject: Re: [CMLHope] Today's Test


 
  
All my doctors are jumping up and down because bcr/abl dropped from 17.9+% to 
1.6+% international scale.  I am also.  The hemoglobin is the center of 
attention right now.  We have added an otc iron table 65mg daily and that  is 
helping with the fatigue.  I will do a CBC the end of the month to check on 
everything.  I am loving the decreased (Gleevec) fog being on only 300mg.  
  
   
  
  
Richard H.   
   
On Thursday, April 2, 2015 at 5:00:39 PM UTC-5, rszi...@aol.com wrote:  
  
   Sorry to hear this Richard.  I hope they will proceed to the next drug, 
(bosulif is working for me), and we have similar histories.  It is so tough to 
fight the fatigue.  I feel for ya!  What are your bcr/abl numbers at last check 
because of the gleevec?  Hoping they are good.
 
 
Have a wonderful holiday weekend,. and 18's, 
  
Susan F. Zimmerman 
  
  
  
 
 
 
-Original Message- 
 From: Richard H  rbhuf...@gmail.com 
 To: cmlhope  cml...@googlegroups.com 
 Sent: Tue, Mar 24, 2015 12:11 am 
 Subject: [CMLHope] Today's Test 
  
  
   

 I had my CBC-DIFF blood test today.  Not good for me.  My HGB is dropped from 
10.2 to 9.6.  ONC is ordering the iron test so we can be prepared to start 
Procrit again, and IF that fails we will discuss proceeding downward until it 
is transfusion time or just proceed to the next drug.  Yes, I expected this 
result as my fatigue has been increasing. 

 


 It has tried to be spring here the last couple of weeks, but they say we are 
going to have winter's last fling starting with rain and ending with sleet 
pellet/penny size on Saturday.

 


 I too am becoming anxious about our Marty.  He is in my daily prayers.

 


 18's as Marty advocates.

 


 Richard H.
   
   
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Re: [CMLHope] Dual Diagnosis: CLL/ CML

['Susan Zimmerman' via CMLHope]

Dear David,


Dealing with two issues has happened to several of us, but usually not two 
types of leukemia!  You are very special to decide to keep fighting on this.  
What choice do we really have?  It's a win-win, if we leave this earth we go to 
a better place forever, or if we stay here longer we get to enjoy our loved 
ones.  Sounds like your wife is pretty special and needs a little care for 
herself, too.  Tell her I suggest a nice soak in the tub in epsom salts and 
lavender oil.  It's a  great pampering device, and soothes the nerves.  May 
your holiday be pleasant as you derive your strength from Him.  We are in this 
together, you are not alone. 


Blessings and 18's,
Susan F. Zimmerman




-Original Message-
From: David Bradley dbra...@hotmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Apr 3, 2015 8:09 pm
Subject: RE: [CMLHope] Dual Diagnosis: CLL/ CML


 
Dear Joyce,  
   
  
  
Actually, God and I are in this for the duration and I (fortunately) don't see 
that there are many alternatives to that.  I only wish that when my appetite 
goes bad, and I am feeling detached from the things that once might have led me 
astray, that it would automatically create lots of face-time with God.  Instead 
I am checking my edema, taking my blood pressure, setting up reminders to take 
my pills, worrying about my wife (a super care-taker who also looks after an 
88-year-old Mom), etc.  Still, whenever I ask for God's company, I usually get 
some sense of presence.  It's not necessarily to fix the problems: more to 
reset my compass.  
  
   
  
  
I have been very lucky with the care I've received, and I'm good for now.  I'm 
glad your husband has Dr. Talpaz (and you).  I have learned to have a lot of 
gratitude for these dedicated health care people (and my wife!).
  
   
  
  
All the best to you and your husband,  
  
David   
   
   

From: joy...@htc.net
Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML
Date: Fri, 3 Apr 2015 12:37:14 -0500
To: cmlhope@googlegroups.com

David,
The Bible tells us that God will not give us more than we can handle, but I 
think you are coming close.  So sorry you have to deal with two blood problems 
at the same time.  I see you live in Northern Michigan.  Have you considered 
seeing Dr Talpaz in Ann Arbor at the University of Michigan Cancer Center?  My 
husband comes all the way from Southern Illinois to see him.  He is very 
knowledgable in CML and I am sure he treats other leukemia types as well.  He 
was instrumental in the formation of Gleevec and Sprycel and several other 
TKIs.  We recommend him highly.  But I am sure you are getting good care at 
Mayo.  Please stay in touch and let us know how you are progressing.  You are 
in my prayers.  God bless and keep you.

 Joyce in IL

 


 


 
 
  
On Apr 3, 2015, at 9:12 AM, גיורא wrote:  
  
  
   

 
Dear David 
 
You are a special brave person and i wish you all the best and great success on 
your dual fight.  
 
You are the only person i have heard of that is on both Ibrutinib and Imatinib 
at the same time 
 
My best regards 
 
Giora 
 
 
נשלח מה-iPhone שלי 


 
‫ב-3 באפר׳ 2015, בשעה 16:51, ‏‏David Bradley ‏ dbra...@hotmail.com 
כתב/ה:‬ 
 


 
  
   
Thanks Beth!   
   

   
Time for another update.  Based on my PCR that was negative for CML in 
December, and my looming CLL, I was taken off Gleevec, and started Imbruvica 
for my CLL, with the hope that the CML would remain dormant.  There have been 
two slip-ups since then.  The Imbruvica triggered a heart problem, an atrial 
fibrillation in February.  At the end of a week in hos[pital, I was given one 
of those treatments with the electric paddles and fortunately immediately went 
back into a good rhythm.  Arriving home, I started a recovery process in which 
I am still weaker than I was, but a bit better every day. 

   
   
Then it was time for a new PCR.  My old nemesis, the Philadelphia chromosome, 
was back (that was quick!).  So now I am back on Gleevec.  My Imbruvica has to 
be on a 1/3 basis, since both drugs are Bruton's Tyrosine Kinase inhibitors, 
and both use the CYP3A4 pathway. 
   

   
   
It has only been since December that I was off Gleevec, but my heartburn 
reminds me of the main downside I had from it.  Still, I have faith it can keep 
the CML at bay.   
   

   
   
Anyway, as I said, I'm better every day, and besides, spring has finally come 
to northern Michigan.   
   

   
   
David  

   

Re: [CMLHope] Today's Test

['Susan Zimmerman' via CMLHope]

Sorry to hear this Richard.  I hope they will proceed to the next drug, 
(bosulif is working for me), and we have similar histories.  It is so tough to 
fight the fatigue.  I feel for ya!  What are your bcr/abl numbers at last check 
because of the gleevec?  Hoping they are good.


Have a wonderful holiday weekend,. and 18's,

Susan F. Zimmerman




-Original Message-
From: Richard H rbhuffm...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Mar 24, 2015 12:11 am
Subject: [CMLHope] Today's Test


 
  
I had my CBC-DIFF blood test today.  Not good for me.  My HGB is dropped from 
10.2 to 9.6.  ONC is ordering the iron test so we can be prepared to start 
Procrit again, and IF that fails we will discuss proceeding downward until it 
is transfusion time or just proceed to the next drug.  Yes, I expected this 
result as my fatigue has been increasing.
  
   
  
  
It has tried to be spring here the last couple of weeks, but they say we are 
going to have winter's last fling starting with rain and ending with sleet 
pellet/penny size on Saturday.  
  
   
  
  
I too am becoming anxious about our Marty.  He is in my daily prayers.  
  
   
  
  
18's as Marty advocates.  
  
   
  
  
Richard H.  
 
  
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Re: [CMLHope] Checking in/ to all my CML friends

['Susan Zimmerman' via CMLHope]

Hi Joyce and Wayne,


Enjoyed your encouragement for the people below.  Just wanted you to know I'm 
also on 100 mg of bosulif since last April 30th, and doing quite well!  Last 
test was done 3 months ago, but it was a fakeout as they got no results cuz it 
was botched.  So I opted to wait 3 more months to go back, as we had spent a 
lot of money to go into Chicago and do some fun things.  I go back I think on 
April 23rd.  My last check I was in remission but not down to zero quite yet.  
It's going to be exciting to hear the good news when you get it that his counts 
are going down.  Do you know what they are now?  Where in southern Illinois do 
you live?  We are in Granger, IN, top middle of Indiana, about 2 hrs 20 min. 
from downtown Chicago if no traffic.  


I had to choose between Dr. Talpaz and Dr. Altman from recommendations by my 
old doc in Fla. at Moffitt.(We moved back home to Indiana in 2010 from Fla.)   
I went 7 yrs and 2 mos without any medication after being on gleevec for 2 
years because I had several brain bleeds and didn't want to die from 
thatlol  So I defied the docs and said no med until I go out of remission.  
I never came out of cellular remission, but counts were 23 INT'l scale when I 
began bosulif.  I told them I wanted the lowest dose, and it's working!  Why is 
Wayne on the lowest dose again?  I know you've told me, but I forget! (chemo 
brain?)


Many blessings and Happy Easter,

Susan F. Zimmerman




-Original Message-
From: Joyce Mesnarich joy...@htc.net
To: CMLHope CMLHope@googlegroups.com
Sent: Thu, Mar 19, 2015 11:53 pm
Subject: [CMLHope] Checking in/ to all my CML friends


Haven't posted for a week or so, but I have been monitoring the site.  Sherri,
you said it is getting warmer in Northern Illinois and the snow is beginning to
melt.  I guess you are planning on sending it down to us in Southern Illinois. 
LOL  We will all feel better when it gets warmer and the sun shines
more.

Jeanne, so sorry to hear that you are still having ear  pain.  Stay on
it.  You have been through a lot lately and I suppose you have put this ear
thing at the bottom of the list.  So go for it now!  Glad to hear you are
tolerating ponatinib.  

Greenie, glad to know your colonoscopy had a good
outcome.  My husband has been through 2 of them in less than 2 years.  They
insist he has blood in his stool, but both times they did a colonoscopy,
endoscopy (down the throat and into the stomach), and he even swallowed the
camera, just in case something was missed.  All tests came back ok.  That's
good, but where is the problem  His blood counts go down, indicating he is
losing blood and they go through the same song and dance with no answers.  Don't
know what to do next.  Get the breast thing checked out quickly.  This, too, you
will overcome, if it is indeed something.  May be nothing.  Now you know what
all us women go through.  Just kiddinga little levity is needed sometime. 
My thoughts and prayers are with you.

Marty,  I know you are out there
somewhere and probably your wife is checking this site from time to time.  Just
know that we are all praying for you.  I know that the operation you just had is
probably the hardest thing you may have gone through.I know the bone marrow
transplant was no walk in the park.  But you have added a few years since then
and it stands to reason that we don't have the same bounce back that we did
when we were younger.  Just be patient and do whatever they tell you.within
reason.  God bless and keep you!

My husband, Wayne, has been on bosulif for a
month now, after having to stop Sprycel in August because of pleural effusion. 
He is doing very well, so far.  He is on a small dose (100 mg).  He will go to
see Dr Talpaz in Michigan the middle of April for testing.  Then a few weeks
later we will know if bosulif is working its magic.

   Joyce in
IL

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Re: [CMLHope] Re: U[PDATE FOR MARTY

['Susan Zimmerman' via CMLHope]

Hey Marty,


We are so thankful you made it through the surgery!  Now that we have seen your 
written word, we can pray and keep you in our thoughts to get rid of that pain 
and improve like Marcie says.  


Love and hugs, and 18's,

Susan




-Original Message-
From: margood18 via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Mar 30, 2015 9:39 am
Subject: Re: [CMLHope] Re: U[PDATE FOR MARTY


 Marty, we understand and just wish the very best for you.  I hope you will see 
improvement every day.  Stay strong and know that you are in our thoughts and 
prayers.   
   
   
   
Marcie   



-Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Mon, Mar 30, 2015 8:54 am
 Subject: Re: [CMLHope] Re: U[PDATE FOR MARTY
 
 
  
 Just to let everyone know, I do consider all of you as my extended family. 
When someone hurts then so do we all. We are all a very tight knit group.   

   
   
 Please know that It has been very difficult for me to stay in touch with all 
of you because this procedure has kept me in and out of the hospital several 
times. However be assured When ever I can I will be in touch.   
   

   
   
 Also sometimes the pain is so bad that I have to be medicated and just can't 
seem to keep an open mind.   
   

   
   
 In all of this I have learned how to accept the pain but trying to keep it 
under control is another story.   
   

   
   
 If I don't return your emails it will be taken care of as soon as I can get my 
strength back.   
   

   
   
 Thank you for your understanding.   
   

   
   
 18's   
   

   
   
 Marty
  
  
   
   
 On Mon, Mar 30, 2015 at 12:18 AM, Richard Hrbhuffm...@gmail.com 
wrote:

 
  
   Marti's has spoken.   It's great to hear from you.  This is just to 
let you know that we are all very concerned about your progress.  Your CML 
family is worrying and praying for your recovery.  I am sorry to hear you are 
having pain, hope they find some relief so you feel better.  
  
   
  
  
   RicharH.
   
 On Sunday, March 29, 2015 at 7:34:42 PM UTC-5, wa2yyx wrote:  
  
   
 Hi everyone,
 


 I did get my kidney transplant and I am trying to recover, 

 


 i am in a lot of pain but when I feel better I will let you know

 


 18's

 


 

   
   


 On Sun, Mar 29, 2015 at 8:19 PM, Myvety2k via CMLHope 
cml...@googlegroups.com wrote: 
 

   
 Jeanie, let's us know as soon as you find out something.  O. 
K.  I'll be thinking of you.  I'm worried about Marty to.

  

 greenie

 
  

  
   
 In a message dated 3/29/2015 6:24:19 P.M. Eastern Daylight Time,   
 cml...@googlegroups.com writes:   
   
 
 Wish we could hear from him.   Going to Moffitt tomorrow to see how the 
ponatinib is working.  Going every two weeks now.  Check in with the results 
soon.   
  
 Prayers  Blessings Jeanie 


   . 18,s 
 
  
 On Mar 29, 2015, at 8:37 AM,  mariac...@gmail.com wrote:   
   
  
 
 
  
   
 Any new updates on Marty? Marty, we do love you and wish to know how you are 
doing!!
 


 Maria :)

 
 
 On Saturday, February 28, 2015 at 1:31:09 AM UTC-4, Richard H wrote:   
  
  
   
   

Re: [CMLHope] Moffit visit

['Susan Zimmerman' via CMLHope]

HI Jeanie,


So sorry you are going thru all these side effects.  Like Beth I hope you can 
quickly reach zero so you can lower the dose.  But again, happy that it is 
working on the leukemic cells!  Cinderella opens around here today, maybe you 
would get your mind off it by watching that at the big screen theater?  Best to 
you,


And Beth, of course it is the same date!  We will make it another time, I'm 
sure.  Best to you as well as you continue to fight the battle.
Your e-mails are always very uplifting.  God bless!


Susan


-Original Message-
From: bkbarney via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Thu, Mar 12, 2015 4:25 pm
Subject: Re: [CMLHope] Moffit visit


 Jeanie,. I know this is what you need. And I am deeply glad that there is such 
a drug that can help you and others who become resistant to some of the other 
TKI's. Myprayer for you is if the Ponatinib can kick  your cancer to the curb, 
you may be able to take a lower dose and maintain. Those on lower doses of 
POnatinib seem to fair better regarding side effect profile. I hope that can be 
in your future. For now, breath in and out and try, if you can and feel up to 
it, to do some things that relax you, tickle your funny bone, just trying to 
find moments that uplift you...to help you through this rough patch. I am 
praying for you...big hug. Beth
 
 
   
-Original Message-   
 From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com   
 To: cmlhope cmlhope@googlegroups.com   
 Sent: Thu, Mar 12, 2015 2:47 pm   
 Subject: Re: [CMLHope] Moffit visit   


 
  
 Hi Beth and thanks.  Doctor says ponatinib is very toxic but I had no choice.  
 My skin is peeling and my hair is falling out just like it did on gleevec. 
 
  
 Thanks for the prayers and uplifts.
  
 I hope you have a good doctors visit.
   
 Prayers  Blessings Jeanie 
\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20.
 18,s  
  
   
 On Mar 12, 2015, at 2:30 PM, bkbarney via CMLHope
cmlhope@googlegroups.com wrote:   
   
  
  
   
Jeanie, so glad blood is looking good. Hope platelets stay around 150 
for you..and that you start to feel better on the drug. I go to do my BCR abl 
on Monday.  B
 
 Susan, oh no...I will being seeing Dr. Druker on the 23rd.  Darn, of course, I 
will be in Oregon while you are in Chicago...murphies lawnext time then! if 
my schedule for Dr. Druker changes, I will let you know.  
  
 
 
 Warm regards,  
 
 18'sBeth  
  
 -Original Message-   
 From: 'Icandoallttc' via CMLHopecmlhope@googlegroups.com 
  
 To: cmlhopecmlhope@googlegroups.com   
 Sent: Thu, Mar 12, 2015 9:37 am   
 Subject: [CMLHope] Moffit visit   
   
   

 
  
 Blood is good. Platelets dropping to 133.   Rather them be low than high.  
Hope everyone is good today.  
 
  
 Prayers  Blessings Jeanie 
\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20.
 18,s 
 
  
 On Mar 11, 2015, at 6:26 PM, 'Susan Zimmerman' via CMLHope   
cmlhope@googlegroups.com wrote:  
  
 
 
  
   Dear Beth,
 


 I come on April 23rd again at 10:30am my time, 11:30 Chicago time for an hour 
and half or socan you meet after that?  My husband usually brings me, so 
you can meet him, too!  Where would you like to meet?  I will be at 
Northwestern which is downtown, so you name it!  Dr. Drukeryou go out there 
when in April?  I'm happy you get to gomy friend Sharon Kraby also flies 
from Florida to him regularly. 
 
 Marcie, thanks for the shout-out!  Sure hope your bone pain is gone and you 
are in the pink again.is it?  Do I remember you lowered your mg of gleevec? 
 That should help, did it?

 


 
 
 18's,  
  
 Susan F. Zimmerman  
  
   
  
 
 
 
 -Original Message-  
 From: bkbarney via CMLHope   cmlhope@googlegroups.com
  
 To: cmlhope   cmlhope@googlegroups.com  
 Sent: Wed, Mar 11, 2015 1:34 pm  
 Subject: Re: [CMLHope] CML visit

Re: [CMLHope] CML visit

['Susan Zimmerman' via CMLHope]

Dear Beth,


I come on April 23rd again at 10:30am my time, 11:30 Chicago time for an hour 
and half or socan you meet after that?  My husband usually brings me, so 
you can meet him, too!  Where would you like to meet?  I will be at 
Northwestern which is downtown, so you name it!  Dr. Drukeryou go out there 
when in April?  I'm happy you get to gomy friend Sharon Kraby also flies 
from Florida to him regularly.

Marcie, thanks for the shout-out!  Sure hope your bone pain is gone and you are 
in the pink again.is it?  Do I remember you lowered your mg of gleevec?  
That should help, did it?




18's,

Susan F. Zimmerman




-Original Message-
From: bkbarney via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Wed, Mar 11, 2015 1:34 pm
Subject: Re: [CMLHope] CML visit


 Susan, I would love to meet with you for a tea or coffee while you are in 
Chicago if you are up for it. Let me know. I am going to Dr. Druker in April, 
hopefully our trip times won't overlap. Thanks for your prayers..always so 
helpful...and Marcie, you have a great day too!
18s Beth   



-Original Message-
 From: 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Tue, Mar 10, 2015 9:28 pm
 Subject: Re: [CMLHope] CML visit
 
 
  
   
 Susan,   
   

   
   
 So good to hear from you and I know how good it is to see the snow melt away. 
Take good care and thanks for always lifting us up in prayer.
   

   
   
 Marcie

 Sent from my iPhone   
   

 On Mar 10, 2015, at 10:10 PM, 'Susan Zimmerman' via CMLHope 
cmlhope@googlegroups.com wrote:

   
   

 Dear Greenie,  
   
  
  
 Thinking of you and hoping for a good report.  This is just another small bump 
in the road.  I am praying extra for you.  God bless and keep us posted.

  
   
  
  
 I am thinking about all of you and pray for good news.  The great news is we 
get up every day and I really think we might see Spring soon!  All our snow is 
melting FAST here in northern Indiana50 for most of the week.  My dog is 
elated she can roam the dead grass instead of the snow again!  
  
   
  
  
 Beth will await your reports' findings as well.  I don't go to Chicago until 
mid-April for more tests.  So it will be six months in between tests, which is 
not recommended.  But they screwed up the last test, so I'm just patiently 
waiting   
   
   
 18's and good sleep to all of you,   
   


 Susan 

 

   
   
 -Original Message-
 From: bkbarney via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent:  Tue, Mar 10, 2015 5:29 pm
 Subject: Re: [CMLHope] CML visit


 Dear Greenie, I hope your test results come out O.K., and they can 
find a simple explanation for your weight loss. So sorry you are going through 
the stress of all this...thinking of you  
   
  
  
 And Richard, as Sherri said, great news about your hemoglobin and the 
collaboration of your docs on your behalf. Colonoscopy sounds reasonable...just 
to rule out and give you peace of mind. Are you more tired than usual???
  
  
   
  
  
 Stay positive and stay strong. Keep us posted...   
 And Sherri, so sorry you had to have a transfusion, but I hope it made you 
feel better and stabilized your counts..  
  
   
  
  
 Still praying for Marty.  
  
 Jeannie, I know it's been a rough two months on ponatinib and you have felt 
miserable...I hope it gets better with time, and maybe, you can take less of a 
dose in months, years to come, if your doc recommends it to help you with the 
toxicity. thinking of you...  
  
   
  
  
 Not a lot new to report herestill working on understanding and treating 
muscle/ weakness/ elevated CPK etc...issues..will do more blood work to rule 
out any other possible cancers lurking, but I don't think that is it..at least 
I, like Greenie, sure hope not.  
  
   
  
  
 18's to all  
  
   
  
  
 Beth   
   
   
 -Original Message-
 From: Myvety2k via CMLHope

Re: [CMLHope] CML visit

['Susan Zimmerman' via CMLHope]

Dear Greenie,


Thinking of you and hoping for a good report.  This is just another small bump 
in the road.  I am praying extra for you.  God bless and keep us posted.  


I am thinking about all of you and pray for good news.  The great news is we 
get up every day and I really think we might see Spring soon!  All our snow is 
melting FAST here in northern Indiana50 for most of the week.  My dog is 
elated she can roam the dead grass instead of the snow again!


Beth will await your reports' findings as well.  I don't go to Chicago until 
mid-April for more tests.  So it will be six months in between tests, which is 
not recommended.  But they screwed up the last test, so I'm just patiently 
waiting


18's and good sleep to all of you,


Susan 



-Original Message-
From: bkbarney via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent:  Tue, Mar 10, 2015 5:29 pm
Subject: Re: [CMLHope] CML visit


 Dear Greenie, I hope your test results come out O.K., and they can find a 
simple explanation for your weight loss. So sorry you are going through the 
stress of all this...thinking of you   
   
   
   
And Richard, as Sherri said, great news about your hemoglobin and the 
collaboration of your docs on your behalf. Colonoscopy sounds reasonable...just 
to rule out and give you peace of mind. Are you more tired than usual???  
   
   
   
   
Stay positive and stay strong. Keep us posted...   
 And Sherri, so sorry you had to have a transfusion, but I hope it made you 
feel better and stabilized your counts..  
   
   
   
   
Still praying for Marty.  
   
Jeannie, I know it's been a rough two months on ponatinib and you have felt 
miserable...I hope it gets better with time, and maybe, you can take less of a 
dose in months, years to come, if your doc recommends it to help you with the 
toxicity. thinking of you...  
   
   
   
   
Not a lot new to report herestill working on understanding and treating 
muscle/ weakness/ elevated CPK etc...issues..will do more blood work to rule 
out any other possible cancers lurking, but I don't think that is it..at least 
I, like Greenie, sure hope not.  
   
   
   
   
18's to all  
   
   
   
   
Beth   


-Original Message-
 From: Myvety2k via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Tue, Mar 10, 2015 5:31 am
 Subject: Re: [CMLHope] CML visit
 
 
  
   
 Hi  Group, As of last Tuesday I have lost 5 pounds and I don't know 
why.  Been eating O. K. so I went to my Reg. Doctor yesterday and I'm going 
over to get some blood work at 7 a.m.  Comprehensive metabolic panel, cbc (no 
diff), vitamin B12 level and TSH, Ultrasensitive.  Also he want's me to have a 
colonoscopy to screen for colon cancer Friday.  I really don't need 2 different 
kinds of cancer so I'm worried.  Will let you all know what happens.

  

 greenie

  

 
 In a message dated 3/10/2015 4:00:08 A.M. Eastern Daylight Time,  
swanson.sherri...@gmail.com writes: 
 
 

 Richard,  That is great news about the your haemoglobin. I also 
think it's great that your drs are talking to one another.  That is so 
important.
 Last week, I had to get a transfusion as my counts were so low. I went to my 
onc and he did the usual blood draw and my WBC was 2.4.  That was enough to 
send me over to the hospital for type and cross match and a transfusion. 
 
 

 I too am eager to hear about Marty and pray for him everyday.  
 
 

 Sherri  

   
   


 On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope 
cmlhope@googlegroups.com wrote: 
 
  
   
 Richard, excellent news and I'm happy to hear that your hemoglobin has 
stabilized.  Glad that your doctors are in sync, too, because that will 
certainly make your life easier. Yay!   
   

   
   
 Marcie

 Sent from my iPhone   
   

 
  
 On Mar 10, 2015, at 12:15 AM, Richard H   
rbhuffm...@gmail.com wrote:  
  
 
 
  
   

 I visited my VA ONC today and both ONCs are bck on the 
same page.  The better news is it appears that my hemoglobin has stabilized at 
10.5. we are going to move forward with the testing program until the end of 
May.  Another piece of news that makes me very happy is that both ONC's works 
at Kansas University Cancer Center. The VA 

Re: [CMLHope] Doctor's Visit

['Susan Zimmerman' via CMLHope]

So happy for you, Richard!!!  Fuzzy vision is weird, never had that 
myself.but those leg and foot cramps, yeah!  Now with my bosulif and only 
on 100 mg, virtually no side effects.  Your turn will come, I'm sure of it.  
Either they'll find a real cure or you'll get to bosulif eventually.  Even 
going to 200 mg of gleevec would be great!!!  I wish you the best for sure


18's,
Susan Z
-Original Message-
From: Richard H rbhuffm...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Feb 24, 2015 12:17 pm
Subject: [CMLHope] Doctor's Visit


 
  
   
  
 
I received my test results yesterday.  It shows a major molecular reduction  
down to 1.579% on the international scale.  The side effects (a long list) are 
minimal.  The most aggravating are watery, fuzzy vision and leg, foot cramps 
from twinges to a pain level 3.  I started on 400mg Gleevec and in 20 days I 
had gained 10 lbs.  I stopped Gleevec for  7 days.  I restarted 300mg Gleevec 
and it has been great so far.  I have changed when I take Gleevec from evening 
to midday, as it was causing indigestion at bedtime.  I have been able maintain 
my weight and have not shown any weight increase on 300mg Gleevec.   
   

   
   
Richard H.   
   
 Dxd 2/2003  
400mg Gleevec 3/2003
 
Undetectable 11/03
 
RT-PCR negative 11/04
 
QT-PCR .003 11/05
 
RBC 8.
 
Gleevec Vacation 11/06-6/07 
 
Iron infusion 11/06
 
Transfusions 12/06-5/07
 
QT-PCR .007
 
Gleevec 1/08 -5/08
 
Procrit 8/08-11/08 
 
Gleevec Vacation 7/08-12/11/14
 
QT-PCR .003  4/09
 
QT-PCR .00156/09
 
QT-PCR .00219/09
 
QT-PCR .00281/10
 
QT-PCR .001  4/10
 
QT-PCR .00468  10/10
 
QT-PCR 1.049% 2/11
 
QT-PCR .0612% 8/11
 
QT-PCR 2.616 %2/12
 
QT-PCR 2.410% 8/12
 
RT-PCR 9.183% 4/13
 
RT-PCR 4.57%   6/13
 
RT-PCR 10.183%   10/13
 
RT-PCR 10.577%   2/14
 
RT-PCR 16.050%   5/14
 
RT-PCR Approx. 20% 10/14 
 
Restarted 400mg Gleevec 12/11/14
 
Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days
 
Started 300 mg Gleevec 1/27/14
 
QT-PCR 1.579%   2/15

 
  

  
  
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Re: [CMLHope] Doctor's Visit

['Susan Zimmerman' via CMLHope]

Dear Susan,


That was very interesting!  I think we met once when I came to Miami to hear 
Dr. Druker with a friend named Sharon Kraby.  Both of us of course have CML.  
We attended a meeting and dinner put on by LLS.  It was great meeting Dr. 
Druker.  


Anyway, your history is unique as all of us have a unique story.  I went 7 
years without any medication and remained in cellular remission.  Now I am on 
only 100 mg of bosulif for about 8 months, and in total MMR.  Very few side 
effects.  


Be blessed and 18's,



Susan F. Zimmerman




-Original Message-
From: 'educatorsusan' via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Wed, Feb 25, 2015 7:56 am
Subject: Re: [CMLHope] Doctor's Visit


Richard and Greenie:

I have been on 250mg of Gleevec now since 2008 or so. 
I'd have to look up the correct date.  But in order to be on this dosage I am
being closely monitored by Dr. Druker with PK and PCR tests every three months. 
I still have side effects with this dosage.  I just had one huge major eyebleed.
This has been followed by many leg cramps...bet it's related somehow because I
had a spell of no cramping and this eyebleed appeared.

Even at 250, my nano
liter measurement was 1325.  This is high for 250 mg of Gleevec.  I just
metabolize Gleevec differently than anyone else.  Dr. Druker will only keep me
on Gleevec because of my side effects.   Only named two because they are the
pertinent ones...but have tinnitus, blurring of vision, and a multitude of
others.  I take 2250 of Citrical PLUS daily in split dosages to counteract the
cramping...lowered from 3000 something because I was on 400-600 mg of Gleevec
from 2003-2008.  I was written up in Blood magazine by Dr. Druker to show that
all medications need to be tailored to each individual patient...no two patients
are alike...think this was in 2009-2010.  He told me that because of me, we were
making history back then...of course he could not use my name but told me when I
read the article, I would definitely know which patient I was!

Good luck on
your continued journeys.

Hugs,
Susan Rosenthal
Miami, Florida

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Re: [CMLHope] Re: Kidney Transplant

['Susan Zimmerman' via CMLHope]

Maria,


I would buy cranberry capsules if I was you, as they work better in my book. I 
am diabetic also and can't stand the taste of non-sugared cranberry juice, 
(Lakewood brand).  That's the only one without added sugar.

18's,
Susan





-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Feb 20, 2015 7:30 pm
Subject: Re: [CMLHope] Re: Kidney Transplant


Hi Maria, 


 Light and diet cranberry juice does have the same effect on your kidneys. Just 
be sure that it is pure cranberry juice and not mixed with other fruit juices 
like grape juice.



18's,


Marty



On Fri, Feb 20, 2015 at 7:01 PM, Maria Cashion mariacash...@gmail.com wrote:

Dear Jennie, no matter what, I always count my blessings I have the 
medication and will start it tomorrow morning  after breakfast.


BMA went OK, Results will be available in two weeks...


Marty, I am diabetic.  I drink light and diet cranbery juice.  I don't know if 
it has the same effect...


Must rest.  Take care you all! 


Maria



On Fri, Feb 20, 2015 at 8:31 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:


What good news Maria!!!
It sounds like you had an awful insurance experience!!
My team at Moffitt took care if getting my ponatinib and I think that is why it 
was approved so quickly.   I was really worried as I had no idea they would 
approve it that quick. It was a good thing too as my platelets were in the 
millions and my WBC dangerously high. 
After only 22 days on ponatinib the blood counts are back to normal.  I think 
the reason they start on a high dose is to get you back in remission as soon as 
possible. Then they can lower the dose if needed, at least that is always 
happened in my case.  
I have high blood pressure and heart problems and they went ahead and put me on 
ponatinib even though they know the risk. And you are right.  They don't 
listen.  
Are you blood counts out if whack?   They can test you for the mutant for 
sprycel.  I had it.  
So happy you got your meds. That is always a hurdle to jump. 


Prayers  Blessings Jeanie . 18,s

On Feb 19, 2015, at 4:19 PM, Maria Cashion mariacash...@gmail.com wrote:



Jeannie, they never put you to sleep here. They use a little anethesia for the 
skin and muscles where they will introduce the needle, but that' all.  So far I 
have had 8 done since I was diagnosed and all I get is local anesthesia.  Out 
of 8, seven have been OK, but my last one was done on Feb 14, 2014 and it was a 
bad one.  The Dr. was not all there either, she had a bad cold. You can't 
imagene how happy I was last November when they told me I could have a PCR/FISH 
instead.


This is happening because in my last CBC done at the Hospital my white blood 
count was a little elevated. ( no, for them infections don't count...patient 
needs another hole in the hip4F4.gif) Immediately she has assumed that I have 
lost remission because I have been off Sprycel since November...It all goes 
back to my infamous Blast Crisis.  God knows that I have outgrown it, but my 
doctors haven't... They care so much that at times they can hurt you!


I also went to the nephrologist today.  I fear the dose of Bosulif that the DR. 
wants me to start:  500mg.  My kidneys are small, apparently my GFR is 59% 
according to my nephrologist and that is near normal.  It's the near that 
bothers me!!!  According to him, there are no indications as to adminstering a 
lower dose of this medication.


If you guys check Phizer's page for Bosulif, it suggests a lower dose of 
300-400 mcg for patients with renal disfuntion or with the possibility of renal 
disfunction or impairment.  Bosulif is toxic to the kidneys...320.gif


My sonogram showed both kidneys were small in size and recommended additional 
exams like an abdominal sonogram, etc.  I will have to ask my GP to do that for 
me.  What really bothers me is that they don't listen to you.  It's that 
feeling that you get of being catalogued as stupid patient when you leave 
your doctor's office...4F4.gif4F4.gif4F4.gif


Also, i found out today that insurance approved my Bosulif...that is some good 
news, the problem that I have with it is the dose, but we will see what 
happens.  I will get the first prescription tomorrow.  This time it only took 2 
weeks to get it.  I believe that I got results because I took matters into my 
own hands, called the pharmacy, med rejected initially.  Called the insurance, 
called back the pharmacy, they resubmitted.  Told the pharmacy what to do.  
Called over and over the insurance company, letting them know, of cvourse that 
my life was at stake...Also mentioned that since the Insurance carrier for my 
zone was changing in April, that they might be stretching approval of the 
medication...1B2.gifCalled today when I got home and the med was approved, 
called the pharmacy and med will be dispensed tomorrow.  I will pick it up 
after the porcedure mannana..


I know this is a long 

Re: [CMLHope] Kidney transplant

['Susan Zimmerman' via CMLHope]

Serious serious prayers will go up for you tonight and tomorrow morning and 
after.  I have a group of prayer warriors coming over for something else 
tomorrow, and we will all lift you up!  I want to do the happy dance, but will 
first be lifting you before the Father for this to go smoothly with no hiccups. 
 I know all on here will be doing the same


So thrilled they found a kidney.  I know you will let us know if it's not a 
cross match.  
Blessings and 18's,

Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5



-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: CMLHope CMLHope@googlegroups.com
Sent: Mon, Feb 23, 2015 7:10 pm
Subject: [CMLHope] Kidney transplant


I thought that everyone should know, When I arrived at dialysis this morning I 
had a phone call from my transplant coordinator. She told me that there is a 
kidney for me and I will have to go to the hospital late this evening. They 
still need to make sure that the cross match is good. If it isn't then back to 
the drawing board but if it is good then the surgery should take place tomorrow 
morning.


I would like to thank you all for all of your good wishes and prayers. 


I will probably be out of touch for a while.


18's,


Marty

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Re: [CMLHope] Re: Kidney TransplantI

['Susan Zimmerman' via CMLHope]

Dear Maria,


You have the final word over your own body.  If it was me, (it's not, so do 
what you want), I would be telling them I decided to start at 300 mg, NO MATTER 
WHAT THEY SAY.  They will have to agree and monitor you if you stick to your 
guns.  Being nice about it, tell them with a smile on your face that you feel 
strongly that 300 mg will be fine to try, and if it the numbers do not go down 
you will increase the dosage.  I demanded 100 mg of bosulif due to my tendency 
toward stroke.  (I did it nicely).  I had been off everything for seven years 
and we were all a little concerned about blast phase happening to me.  Soin 
6 months I am in total remission!!! on 100 mg.


Best wishes to take control of your own body and listen to your heart.
18's,

Susan F. Zimmerman




-Original Message-
From: Maria Cashion mariacash...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Thu, Feb 19, 2015 4:20 pm
Subject: Re: [CMLHope] Re: Kidney Transplant


Jeannie, they never put you to sleep here. They use a little anethesia for the 
skin and muscles where they will introduce the needle, but that' all.  So far I 
have had 8 done since I was diagnosed and all I get is local anesthesia.  Out 
of 8, seven have been OK, but my last one was done on Feb 14, 2014 and it was a 
bad one.  The Dr. was not all there either, she had a bad cold. You can't 
imagene how happy I was last November when they told me I could have a PCR/FISH 
instead.


This is happening because in my last CBC done at the Hospital my white blood 
count was a little elevated. ( no, for them infections don't count...patient 
needs another hole in the hip) Immediately she has assumed that I have lost 
remission because I have been off Sprycel since November...It all goes back to 
my infamous Blast Crisis.  God knows that I have outgrown it, but my doctors 
haven't... They care so much that at times they can hurt you!


I also went to the nephrologist today.  I fear the dose of Bosulif that the DR. 
wants me to start:  500mg.  My kidneys are small, apparently my GFR is 59% 
according to my nephrologist and that is near normal.  It's the near that 
bothers me!!!  According to him, there are no indications as to adminstering a 
lower dose of this medication.


If you guys check Phizer's page for Bosulif, it suggests a lower dose of 
300-400 mcg for patients with renal disfuntion or with the possibility of renal 
disfunction or impairment.  Bosulif is toxic to the kidneys...


My sonogram showed both kidneys were small in size and recommended additional 
exams like an abdominal sonogram, etc.  I will have to ask my GP to do that for 
me.  What really bothers me is that they don't listen to you.  It's that 
feeling that you get of being catalogued as stupid patient when you leave 
your doctor's office...


Also, i found out today that insurance approved my Bosulif...that is some good 
news, the problem that I have with it is the dose, but we will see what 
happens.  I will get the first prescription tomorrow.  This time it only took 2 
weeks to get it.  I believe that I got results because I took matters into my 
own hands, called the pharmacy, med rejected initially.  Called the insurance, 
called back the pharmacy, they resubmitted.  Told the pharmacy what to do.  
Called over and over the insurance company, letting them know, of cvourse that 
my life was at stake...Also mentioned that since the Insurance carrier for my 
zone was changing in April, that they might be stretching approval of the 
medication...Called today when I got home and the med was approved, called the 
pharmacy and med will be dispensed tomorrow.  I will pick it up after the 
porcedure mannana..


I know this is a long one.  I have been away for a while, trying to get some 
personal matters finished.  You never know what can happen and I dont really 
want to leave my family with any loose ends.


I think of you guya everyday, WE ARE TRUE WARRIORS, struggling againt a 
threacharous disease, unkind doctors and very stron medication side effects.  
Truly LOVE YOU!


Maria





On Thu, Feb 19, 2015 at 11:42 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:


Hi Maria--I had BMA a few weeks ago.  It just confirmed my leukemia. I'll send 
a highlight of mine soon.  Are they going to put you to sleep?
Good luck -- you will be ok.  Praying for you 

Prayers  Blessings Jeanie . 18,s


On Feb 19, 2015, at 6:37 AM, Marty Gartenberg wa2...@gmail.com wrote:



Hi Maria,


I'm sorry to hear about your kidney problems. If I can give you some advice? If 
you are not diabetic try drinking cranberry juice. It washes out your kidneys 
and keeps you hydrated.


Good luck with your BMA, I am praying that everything comes out well.


18's,


Marty



On Thu, Feb 19, 2015 at 1:43 AM,  mariacash...@gmail.com wrote:

Hello to all!!! I have been going to the posts, but not feeling well enough to 
comment on any until today.  I am so very happy with the news about your 

Re: [CMLHope] Change from Sprycel to bosulif

['Susan Zimmerman' via CMLHope]

Dear Joyce,


I have had very few side effects on bosulif.  I had one glass of wine about 3 
hours after taking my med and got violently sick, had to stay in bed with 
stomach upset for four hours.  No more drinking alcohol, period.  Also make 
sure you have something on his stomach, (food) before taking.  I take mine 
about 11am at breakfast every day, with other drugs for different things.  They 
prefer you take it alone to have more effect, and I still got into remission.  
A couple of times had some nausea.  Got some nausea pills in reserve for that.  
I just truly believe he'll be fine!


18's,

Susan F. Zimmerman




-Original Message-
From: Joyce Mesnarich joy...@htc.net
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Feb 16, 2015 2:47 am
Subject: Re: [CMLHope] Change from Sprycel to bosulif


Thank you for your replies and prayers.  Also, Susan, thanks for the 
encouraging words.  Do you have any significant side effects?
  Joyce in IL




On Feb 15, 2015, at 11:41 AM, 'Susan Zimmerman' via CMLHope wrote:


To Joyce and Wayne,


I had been on gleevec 400 mg for 2 yrstook myself off due to brain bleeds 
against doc's orders. I was able to stay in cellular remission for over 7 
years.  Then I went to Northwestern Medical as my molecular was up to 23 on the 
bcr/abl test.  It dropped the next month to 9 like Wayne'sstill in cellular 
remission.  I had already decided to try bosulif at that point, so went on 100 
mg.  It took six months to get into MMR (major molecular remission,) but I'm 
THERE.  On that low dose, so I am very very optimistic about Wayne having good 
results with few or no side effects on 100 mg.  Keep on fighting and relax and 
enjoy every day!


P.S.  Yesterday the 14th was my 10yr anniversary for having CML.  What a 
Valentine present that was!!!


Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5



-Original Message-
From: ICANDOALLTTC via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sun, Feb 15, 2015 10:32 am
Subject: Re: [CMLHope] Change from Sprycel to bosulif



I haven't taken bosulif yet and I tried to tell my onc about it but he was set 
on Ponatinib.   He said that was my last hope.  Maybe my mutant would work 
against bosulif also; just don't know.
Good luck with it and my prayers are with you always.
Blessings Love And Prayers
Jeanie3
 

In a message dated 2/15/2015 12:33:47 A.M. Eastern Standard Time, 
rbhuffm...@gmail.com writes:
  
  
Prayers have and will continued for Wayne.
  
Richard H.

On Saturday, February 14, 2015 at   8:36:08 PM UTC-6, grammie wrote:
  

Jeanie and all, 
Yes, they did take tissue samples during the endoscopy  colonoscopy, but 
the blood was found BEFORE those procedures.  That's why he had the 
procedures.

Wayne was taken off Sprycel 5 months ago because of pleural effusion.  For 
3 months his PCRU held, but by 6 months it went up to 9.36.  Dr Talpaz has 
chosen bosulif for his next TKI.  He has so many other health problems 
(diabetes, A-fib, COPD, high blood pressure) that it is hard to pick 
another TKI.  I don't know much about bosulif.  Has anybody been on it?  
They are giving him a small dose, 100 mg.  But they had to change his A-fib 
medication which has kept him in a good heart rhythm for 5 years.  His 
diabetes meds are questionable, but they are going to monitor everything 
and see how it goes.  So if possible, send a few prayers to Illinois for 
Wayne and his new TKI, hoping it works and that the side effects are not 
too bad.

 Joyce in IL







On Feb 14, 2015, at 6:17 AM, 'Icandoallttc' via CMLHope wrote:


  
  
Hi Joyce
  
Did they take tissue during endoscopy and colonoscopy ?
  
He could be bleeding from that.  
  
That's the problem.  They just don't listen. 
  
Keep talking to them.  
  
Have you considered ponatinib?
  
Does he have heart problems?
  
So far so good for me.
  
This is my 19th day on ponatinib.   He could have developed a   mutant for 
sprycel by now.  That's what happened to me.  Keep on   fighting.  
  

Prayers  Blessings Jeanie 18's 
  

On Feb 14, 2015, at 1:36 AM, Joyce Mesnarich joy...@htc.net   wrote:


  

Two years ago my husband had to have 2 pints of blood because of low 
hemoglobin.  He seems to be heading that way again.  They have found 
blood in his stool, but could not find any cause for it, following an 
endoscope of the esophagus and a colonoscopy.  He also takes warfarin 
(blood thinner) for a heart condition (A-fib).  I am thinking that may 
be a factor, but no one wants to talk about that.  He has been off of 
Sprycel for 5 months due to pleural effusion, but his counts

Re: [CMLHope] Change from Sprycel to bosulif

['Susan Zimmerman' via CMLHope]

To Joyce and Wayne,


I had been on gleevec 400 mg for 2 yrstook myself off due to brain bleeds 
against doc's orders. I was able to stay in cellular remission for over 7 
years.  Then I went to Northwestern Medical as my molecular was up to 23 on the 
bcr/abl test.  It dropped the next month to 9 like Wayne'sstill in cellular 
remission.  I had already decided to try bosulif at that point, so went on 100 
mg.  It took six months to get into MMR (major molecular remission,) but I'm 
THERE.  On that low dose, so I am very very optimistic about Wayne having good 
results with few or no side effects on 100 mg.  Keep on fighting and relax and 
enjoy every day!


P.S.  Yesterday the 14th was my 10yr anniversary for having CML.  What a 
Valentine present that was!!!


Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5



-Original Message-
From: ICANDOALLTTC via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sun, Feb 15, 2015 10:32 am
Subject: Re: [CMLHope] Change from Sprycel to bosulif



I haven't taken bosulif yet and I tried to tell my onc about it but he was set 
on Ponatinib.   He said that was my last hope.  Maybe my mutant would work 
against bosulif also; just don't know.
Good luck with it and my prayers are with you always.
Blessings Love And Prayers
Jeanie3
 

In a message dated 2/15/2015 12:33:47 A.M. Eastern Standard Time, 
rbhuffm...@gmail.com writes:
  
  
Prayers have and will continued for Wayne.
  
Richard H.

On Saturday, February 14, 2015 at   8:36:08 PM UTC-6, grammie wrote:
  

Jeanie and all, 
Yes, they did take tissue samples during the endoscopy  colonoscopy, but 
the blood was found BEFORE those procedures.  That's why he had the 
procedures.

Wayne was taken off Sprycel 5 months ago because of pleural effusion.  For 
3 months his PCRU held, but by 6 months it went up to 9.36.  Dr Talpaz has 
chosen bosulif for his next TKI.  He has so many other health problems 
(diabetes, A-fib, COPD, high blood pressure) that it is hard to pick 
another TKI.  I don't know much about bosulif.  Has anybody been on it?  
They are giving him a small dose, 100 mg.  But they had to change his A-fib 
medication which has kept him in a good heart rhythm for 5 years.  His 
diabetes meds are questionable, but they are going to monitor everything 
and see how it goes.  So if possible, send a few prayers to Illinois for 
Wayne and his new TKI, hoping it works and that the side effects are not 
too bad.

 Joyce in IL







On Feb 14, 2015, at 6:17 AM, 'Icandoallttc' via CMLHope wrote:


  
  
Hi Joyce
  
Did they take tissue during endoscopy and colonoscopy ?
  
He could be bleeding from that.  
  
That's the problem.  They just don't listen. 
  
Keep talking to them.  
  
Have you considered ponatinib?
  
Does he have heart problems?
  
So far so good for me.
  
This is my 19th day on ponatinib.   He could have developed a   mutant for 
sprycel by now.  That's what happened to me.  Keep on   fighting.  
  

Prayers  Blessings Jeanie 18's 
  

On Feb 14, 2015, at 1:36 AM, Joyce Mesnarich joy...@htc.net   wrote:


  

Two years ago my husband had to have 2 pints of blood because of low 
hemoglobin.  He seems to be heading that way again.  They have found 
blood in his stool, but could not find any cause for it, following an 
endoscope of the esophagus and a colonoscopy.  He also takes warfarin 
(blood thinner) for a heart condition (A-fib).  I am thinking that may 
be a factor, but no one wants to talk about that.  He has been off of 
Sprycel for 5 months due to pleural effusion, but his counts continue 
to worsen.  Go figure!! 
  Joyce in IL







On Feb 13, 2015, at 7:06 AM, 'Icandoallttc' via CMLHope wrote:


  
  
My hemoglobin went to under 8 and I had to have transfusions. I 
think if the onc I had at the time would have taken me off   meds my 
blood would have recovered.  I was on Tasigna at the   time. I take 
iron and also try to eat iron rich   foods. 

Prayers  Blessings Jeanie 18's 
  

On Feb 13, 2015, at 12:48 AM, Joyce Mesnarich joy...@htc.net   wrote:


  

Jeanie, 
You have made my day!!  So glad to see your numbers.  Does this 
lower hemoglobin seem to be a fact of life for CMLers?  My 
husband's hemoglobin also is low and he is told to take iron pills 
(Yuck).  Keep on Keepin' on.

   Joyce in IL




On Feb 12, 2015, at 2:32 PM, 'Icandoallttc' via CMLHope  

Re: [CMLHope] Re: News

['Susan Zimmerman' via CMLHope]

Richard H:


Of course you can join me in the happy dance!  We'll all join together for it!  
And Happy Valentine's Day to everyone, cuz the love is flowing from this group 
one to another!  


18's,

Susan 


-Original Message-
From: Richard H rbhuffm...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Wed, Feb 11, 2015 12:13 am
Subject: [CMLHope] Re: News



Marty, So happy to hear this news.  Susan, May I join you in that HAPPY DANCE, 
HAPPY DANCE!!


Richard H.

On Tuesday, February 10, 2015 at 7:50:17 PM UTC-6, jb wrote:
That's great news. I keep to date so I know you have been waiting for this for 
some time Congratulations and good luck John

Sent from my iPad

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Re: [CMLHope] Kidney Transplant

['Susan Zimmerman' via CMLHope]

Praying, YAYAYAYAYAY  All of us are absolutely in agreement with this 
kidney coming FAST to aid you in continuing to minister to all of us, but 
especially for you to continue to enjoy life on this earth.  We are with ya!


Doin' the happy dance! 18'[s,


Susan F. Zimmerman
Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you.  Hab. 
1:5



-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: CMLHope CMLHope@googlegroups.com
Sent: Tue, Feb 10, 2015 4:57 pm
Subject: [CMLHope] Kidney Transplant


First I would like to thank each and every one of you for your prayers. As I 
pray for all of you I know that you have been also praying for me.


This web site makes all of us as one caring family and it is always of help for 
all of us.



I was just called by my transplant coordinator to inform me that I am now in 
status 5. As soon as a B+ matching comes along and if is a good cross match I 
will be called. It could be anytime or maybe a month or longer. There is no way 
of knowing. At least now I know that it is almost there. Hopefully very soon. I 
have been looking for this for almost four years.


All of my doctors have been writing letters to the Cleveland Clinic and 
yesterday my kidney doctor also wrote one asking for me to be elevated on the 
list.


Again, I am really blessed by having all of you as my friends. I will keep you 
informed of any further news.


18's


Marty




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Re: [CMLHope] Found this!!!

['Susan Zimmerman' via CMLHope]

Thank you Susan, my doc is Dr. Altman.  Glad to see her again proving she is on 
the cutting edge!  Even though my last lab test was a futile investment of my 
time, as they got no results with the explanation, not enough substance 
gathered. or something like that.  Oh well!  Hope you are doing wellare 
you having issues with mutations yourself?


18's,

Susan F. Zimmerman





-Original Message-
From: 'educatorsusan' via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Feb 9, 2015 7:43 am
Subject: [CMLHope] Found this!!!


http://www.onclive.com/peer-exchange/chronic-myeloid-leukemia/When-Should-Patients-Receive-Follow-up-Mutational-Tests

Long time no write...

Might be useful to some of you...clink on link above.

Hugs,
Susan Rosenthal

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Re: [CMLHope] Ponatinib

['Susan Zimmerman' via CMLHope]

Dear Jeanie and all,


Like Marty says, keep on going like the energizer bunny.  No fear in your 
life makes a whole lot more tranquility and ability to concentrate and 
function.  I'm using lavender essential oil to calm myself along with a nice 
soak in the tub with epsom salts, lavender oil, (10 drops) and baking soda.  I 
was amazed at the results!  Wishing you the best.


Hey Greenie, I checked out the website for your daughter in law's massage 
place.  Looks nice!  I hope her business really flourishes. Even if we are 
fighting this cold winter up here without you!!!


Bless everyone as you go about living your lives determined to fight the good 
fight of faith.  Every day is a victory!




18's,



Susan F. Zimmerman




-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Feb 6, 2015 5:36 pm
Subject: Re: [CMLHope] Ponatinib


Keep on going Jeanie.


18's,


Marty



On Fri, Feb 6, 2015 at 10:03 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:


Good morning everyone
My blood results are in and my platelets came down a little--1050 million--WBC 
still at 14--still fighting. 

Prayers  Blessings Jeanie 18's 

On Feb 4, 2015, at 4:35 PM, bkbarney via CMLHope cmlhope@googlegroups.com 
wrote:




Good you have a few options to work with...Hopefully this one will work for you 
in a bit of time. I am championing your warrior spirit!! 


Take care, 
18's Beth


-Original Message-
From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Wed, Feb 4, 2015 7:07 am
Subject: Re: [CMLHope] Ponatinib



11 years for me--still fighting !!!  9th day on ponatinib.  Sure hope it starts 
working. My onc says it's my last choice but there is one more tki I haven't 
tried--bositinib--not sure if spelling.  
Thanks for the uplift. 

Prayers  Blessings Jeanie 18's 

On Feb 4, 2015, at 12:56 AM, bkbarney via CMLHope cmlhope@googlegroups.com 
wrote:



Thanks Greenie. You too  are my inspiration.Fifteen years!!! God bless Dr. 
Druker! Five years for me February 12th. I was diagnosed at 48. 


Take good care and enjoy the warmth! Beth



-Original Message-
From: Myvety2k via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Feb 3, 2015 8:31 pm
Subject: Re: [CMLHope] Ponatinib



Beth, get out the heating pad make sure it's a big one they make different 
sizes. I go fishing under the bridge going over to Sanibel sometimes.  If you 
do come down here we will get together that's for sure.  Just get better.   My 
son Derek's wife Ruby, she has a massage and yoga wellness studio 118 North 
Clinton St., Suite 102 in Chicago.  It's called Massage Evolved.  website  
(massageevolved.com).  They started a little over a year ago and seem to be 
doing very good.  He called me over the weekend and told me about the snow.  
You miss Florida and I'm sorry I don't miss North West Indiana because of that 
weather.  Summer is just to short up their, Grace and my bones can't take it.  
Plus getting sick with a cold.  But Grace want's so purchase a small house or 
condo up their for the summer so we would miss the real hot months down here.  
It would only be for 4 to 5 months.  That way we could visit with our grand 
kids and our kids.
 
I can remember when I first found out that I had CML, it was to weeks before 
xmas 1998.  I asked the doctor at that time how much time I had and she said 
between 1 1/2 to 2 years.  She put me on hydra then she sent me to Northwestern 
to see doctor Tallman and he put me in a study with interferon which almost 
killed me it was that bad.  They stopped it after 3 months because I told him I 
couldn't take be that sick anymore. So they stopped the study early..I wanted 
to die, a short time he called me to put me in another study called STI571.  
Their was only 8 of us and I was the only one from Indiana plus the oldest of 
the 7.  The study had 200 people from the US and this was the only country 
using STI571.  And here I am after 15 years still driving everyone crazy.  It's 
funny how things turn out, I call it faith.
 
You just got to hang in their things will get better it won't happen over night.
 
greenie
 
 
 
 
 

In a message dated 2/3/2015 6:03:14 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:

Greenie,   


  
It's snowing again here in Chicago land..hopefully only a couple of   
inches..to add to the 20 plus already on the ground. I have been down with a   
bad cold this week...but I watched my neighbors son--- 23 year old..trying to   
dig out people- including me!   .snow drifts were waist high! It's   
crazy...and now..it also got very cold...below zero wind chills last night..so  
 lots of ice...ah winter
  


  
I was dreaming last night about the causeway between Fort Myers and   
Sanibel...watching the Osprey soar, seeing dolphin in the water...the pelicans  
 sitting on wood stumps along the 

Re: [CMLHope] Update Jeanie's blood counts

['Susan Zimmerman' via CMLHope]

Dear Jeanie,


Will surely be praying for you.  Don't panic, and don't even be anxious!  Worry 
accomplishes nothing except wasting time.  I have not been on lately cuz of my 
own battles.  We have God on our side, like Marty says!  Loved that emoticon of 
him hugging you!!!  Here's my only way.xx That is lots of 
hugs.


Blessings and 18,
Susan


-Original Message-
From: Myvety2k via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Jan 30, 2015 1:22 pm
Subject: Re: [CMLHope] Update Jeanie's blood counts



Hi Jeanie, I'm sure that after a period of time the count will get better.  I 
wish I had your creatine mine is always between 1.3 to 1.56.  Hang in their 
things Will Work Out for you. I'll be thinking of you.
 
greenie
 

In a message dated 1/30/2015 12:38:37 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:
  

Hi all,
  
The following counts were all high on latest blood test:
  


  
RDW 62.5
  
Platelet counts 1535
  
Basophils Auto 0.30 k/ul
  
Immature Gran Auto 0.34 k/ul
  
Potassium 5.6
  
Bun 25 mg/dl
  
Creatine 1.1
  

Prayers  Blessings Jeanie 18's 
  

On Jan 30, 2015, at 8:00 AM, Icandoallttc icandoall...@aol.com   wrote:


  


Kk Greenie. 

The doctor gave me Proclorperazine.   It didn't help me that much but 
meclizine did.   We all have to find what works for us.  Good luck and hang 
in there. 

Prayers  Blessings Jeanie 18's 


On Jan 30, 2015, at 7:48 AM, Myvety2k via CMLHope cmlhope@googlegroups.com
 wrote:



  

Jeanie, I take promethazine 25mg but I cut them in 1/4   because if I take 
the hole pill in makes me sleepy. 1/2 works better but   that puts me into 
low gear.  But it does take away the   nausea.
  
 
  
greenie
  
 
  
  
In a message dated 1/30/2015 7:44:52 A.M. Eastern Standard Time, 
cmlhope@googlegroups.com   writes:
  

Hi Greenie 

Sorry to hear you still have your nausea. 

Have you tried Meclizine ?   I find it works better than compozine.  My 
nausea is better since coming off hydrea. 

I am on my 5th day of ponatinib.I had blood work done yesterday.  

My WBC came down but the platelets keep going up. Still in the millions 
(1529) The doctor is baffled but dropped my ponatinib to 2 (15 mg) 
tablets daily.  

My skin is drying out and headaches have returned.  This reminds me of 
Gleevec but it has many side effects.  

Just have to deal with them as usual. 

I hope everyone is good this morning. 





Prayers  Blessings Jeanie 18's 


On Jan 30, 2015, at 7:07 AM, Myvety2k via CMLHope cmlhope@googlegroups.com
 wrote:



  

I all the good news was short termed, I woke up   yesterday and the 
nausea came back so I'm thinking I may have picked   up some bug.  
Grace she's O.K. time will tell. So far this   morning I feel find but 
will see our the rest of the day   goes.
  
 
  
greenie
  
 
  
  
In a message dated 1/29/2015 9:51:44 P.M. Eastern Standard Time,   
cmlhope@googlegroups.com   writes:
  
YEAH FOR GOOD NEWS :) Beth



-Original Message-
From: Myvety2k via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jan 27, 2015 4:59 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years 
on tkis?




Well, I have good news.  We both woke up today, Grace was O. K. and 
later on into the day I'm feeling much better.  Tomorrow well tell 
the truth.  I'll let you all know and Thanks for thinking of us 
both.  We all are one hell of a team, we should have our own 
Superbowl..

 

greenie

 


In a message dated 1/27/2015 1:32:57 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:

maybe you both have   a bit of a virus or bug? Hope that's all it 
is and you both will   feel better soon. It does seem odd when all 
of a sudden after so   many years you get a symptom like nausea.
Be well...thinking of   you and everyone else today...  
 


  
Beth

  
-Original   Message-
From: Myvety2k via CMLHope cmlhope@googlegroups.com
To:   cmlhope cmlhope@googlegroups.com
Sent:   Mon, Jan 26, 2015 5:09 pm
Subject: Re: [CMLHope] My Update   anyone had relapse after 5 years 
on tkis?

  
  
  
Hi Beth, I'm starting to think it's not the   Gleevec that's given 
me the 

Re: [CMLHope] Blood checkup platelets still over million

['Susan Zimmerman' via CMLHope]

Hi Jeanie,
Will be praying and believing with you that this will be easily tolerated by 
your body and counts will go down very quickly.


I can't seem to want to stay out of the bed very long lately.  Just exhausted, 
don't know why, trying different things.  I am only on 100 mg a day of bosulif 
and can't imagine that's causing it.  What does anybody else think?  We upped 
my antidepressant and lowered my blood pressure med to see if this helps.  
Going to a cardiologist soon.


Everyone, we are all in this together and we'll all make it through!!!


18's,

Susan 


-Original Message-
From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Jan 26, 2015 2:47 pm
Subject: Re: [CMLHope] Blood checkup platelets still over million



Thanks Greenie and I will 

Blessings Jeanie 18's 

On Jan 26, 2015, at 2:15 PM, Myvety2k via CMLHope cmlhope@googlegroups.com 
wrote:



Good Luck and think positive.
 
greenie
 
 
 

In a message dated 1/26/2015 2:00:25 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:
Just   took my first dose of ponatinib.  He said to take 3--15 mg tablets daily 
  to see if it would bring the counts down.  
Do this for 3 days and see   him on thurs.  
There is danger of heart problems--blood clots--stroke   and ect--/ real fun 
but what other choice do I have???
1 baby aspirin daily   and stay on the allopurinol daily.  Hope every one is 
good.  Let us   know. 
Prayers 

Blessings Jeanie 18's 

 On Jan 26,   2015, at 1:54 PM, 'Icandoallttc' via CMLHope   
 cmlhope@googlegroups.com wrote:
 
 Hi all,
   
 
 Blessings Jeanie 18's 
 
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