Re: [CMLHope] New Canary hatchings

[Pete Pabon]

Get Outlook for iOS

From: 'Jeanie' via CMLHope 
Sent: Wednesday, June 6, 2018 4:45:57 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] New Canary hatchings

Hi all
Actually my mother was called Jean but I never have been. Don’t know why I 
signed it that way. My mom liked the song Jeanie with the light brown hair and 
she named me Jeanie. As for my hair it has fallen out a lot but I still have 
some. Pictures later.
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
New Doctor--Dr Martine Extermann
Moffitt Cancer  center

0 CBL. ABL

On Jun 6, 2018, at 12:33 PM, Marty Gartenberg 
mailto:wa2...@gmail.com>> wrote:

Oh Susan, what are you and "Jean" going to do to me? Or better still what is 
everyone else going to do to me? Do you think that i should hide some ware?😂

18's

Marty

On Wed, Jun 6, 2018 at 12:12 PM, 'Susan Zimmerman' via CMLHope 
mailto:cmlhope@googlegroups.com>> wrote:
I noticed that, too! (Jean)



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


-Original Message-
From: Marty Gartenberg mailto:wa2...@gmail.com>>
To: cmlhope mailto:cmlhope@googlegroups.com>>
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 
mailto:cmlhope@googlegroups.com>> 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 
mailto:joy...@htc.net>> 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 
mailto:wa2...@gmail.com>> 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] 3 months off Gleevec

[Pete Pabon]

Every two months



From: 'Jeanie' via CMLHope 
Sent: Sunday, September 3, 2017 8:07 AM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] 3 months off Gleevec

How often are u getting tested.  Thanks.

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 2, 2017, at 3:58 PM, nycotb176 
mailto:djdannyvint...@gmail.com>> wrote:

Going on 16 yrs on 400 gm of  Gleevec, when I was diagnosed with sclerosis of 
the Liver. My Oncologist at Moffitt Cancer Center lowered my dosage to 200. 
After a year, I was still in remission.No Philadelphia Bug found in the last 15 
yrs. Six months ago I was told I may be a candidate for a clinical trial for 
individuals like me. I had to go thru a list of questions and when I was done I 
was told the trial had closed. I decided to take my self of the Gleevec and 
spoke to my oncologist and he told me that he felt I may be CURED (Which I 
don't like that word) Well its been 3 months so far and no changes. Looking 
forward to the future. I was also told I would have to be off Gleevec for two 
years before they would be able to tell me the good news. Has anyone else tried 
to go off Gleevec

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[CMLHope] Clinical trials

[Pete Pabon]

Just curious to know if anyone is involved with clinical trials concerning 
stoping
Gleevec.

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RE: [CMLHope] Am I strong? Are we all strong? Read on...

[Pete Pabon]

Diagnosed 1999Gleevec 200015 years still no phillies found

Date: Fri, 15 Jan 2016 10:18:43 -0500
Subject: Re: [CMLHope] Am I strong? Are we all strong? Read on...
From: wa2...@gmail.com
To: cmlhope@googlegroups.com

Well now I got a much refreshing title. Being that everyone is a leader of this 
group so does it go to help all of us together.
You know that it's been so long that I forgot about Rob. I do hope to hear from 
him. I also had no idea about his mother having leukemia and I hope that she is 
doing well. 
So many new things have happened since we were members and as I remember this 
group was in fact a yahoo group but I just can't put my finger if it was for 
sure. Some time has passed and my memory has not been my greatest asset so I 
would really like to hear from Rob.
Just think look at some of the people that were still around then (like 
yourself) that are still around now. Hey what ever happened to CML will be only 
be around for 5 years until the "Lukie Dragon" will come and get you.
Do you remember that saying a very long time ago? Well that for sure has has 
changed with all of these advancements using these TKI's and what is coming 
down the pipe next.
I'm telling you it will be that, no matter what you are and what you believe in 
there will come a time near to now that this "Dragon" will meet it's demise.  
You mark my words.
18's,
Marty
On Fri, Jan 15, 2016 at 7:02 AM, 'Icandoallttc' via CMLHope 
 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 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 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) 



So
 please lets everyone stop calling me the leader of this group because 
we all are some a little more some a little bit less but when we all 
come together we are a force to recon with.


Remember
 18's Have you ever noticed that I have never left it out before? Who 
knows maybe there is a reason. 18's is life, at least in my book.


Marty





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RE: [CMLHope] Platelets

[Pete Pabon]

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 
0.20hooe this helpsSkip Dx 1977
Sent from Yahoo Mail on Android
 From:"'Icandoallttc' via CMLHope" 
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,sDx 1/2004Started Gleevec 2/2004Started Tasigna 
 9/2009Started Sprycel 11/2009Started Ponatinib January 2015
On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan  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  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 
CanadaGleevec pioneer since 2001




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RE: [CMLHope] My Update anyone had relapse after 5 years on tkis?

[Pete Pabon]

jeanie,  Who is your doctor at Moffitt

Date: Wed, 14 Jan 2015 21:32:26 -0800
From: rbhuffm...@gmail.com
To: cmlhope@googlegroups.com
CC: icandoall...@aol.com
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?

I am my own advocate,  I do have two ONCs. One is at a new regional cancer 
center and i am completing 12 years of treatment with.  The other is with the 
VA.  They are assigning me underqualified Drs. that should not be trying to 
treat me, but only approving the medication prescribed by the specialist.  The 
VA Doctor has no actual experience in Blood Cancers.  I will start the 
procedures tomorrow to resolve this.

Richard H.

On Wednesday, January 14, 2015 at 4:08:01 AM UTC-6, Shannon L wrote:Hi Richard 
and Jeanie
I would think that they would want you to be informed. I hope your issues 
resolve soonBest wishes Shannon

On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote:




Hi Richard and thanks for the update.  My onc doesn't like for me to 
be informed either; he just ignores what I say and goes on to tell me what he 
thinks.
My uric acid was high along with my WBC and Platelets.  He seemed to 
be more concerned with the high uric acid--even called me on my cell personally 
twice; never had that happen before.
He took me off Sprycel adn put me on Hydrea and allopurinol; it's funny the 
same thing they did 11 years ago when I was first dx.
He took another blood sample to see if I have a mutation against the 
Sprycel.  It seems strange that I had a mutation with Gleevec after 5 
years.  Is five years a cut off point? Has anyone else have this 
happen?  Anyone else been on Hydrea after tki?
Going next week to Moffitt to see if I have the mutation.  Will let 
everyone know.
The leukemia has reared it's ugly head once again!!
Pray for me and everyone in need.
Blessings
Jeanie 
(18) 
 
 

In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, 
rbhuf...@gmail.com writes:

  
  WOW!  Just read todays posts.  I am praying 
  for the group.  I will add my problem to the list.  Dec. 30 I 
  contacted ONC about gaining 9.5 pounds water weight in 20 days after 
  restarting Gleevec.  His nurse called that he was out of the country on 
  vacation with his family.  She checked with the DR. covering for him and 
  he asked me to stop Gleevec as he thought I was 
  gaining weight  too fast also.  My ONC did return to the 
  office on Monday but finally had a conference with his Associate and he 
agreed 
  with that decision.  They both thought that I should be on a different 
  treatment.  My ONC was to draft an e-mail to the VA ONC (the one 
  controlling my prescriptions) about my reaction to Gleevec and 
  to recommend the treatment he thinks I should be on.  So I am 
  still in a wait and see stage.  My ONC tells me I am too informed about 
  my condition and that challenges most blood cancer specialists  that 
  rarely see CML.  
  So let the fun and games continue.  I am still feeling 
  great, but the "Gleevec Brain" was also starting to show itself, but nine 
days 
  off has cleared it. I'm as sharp as a busted tack, but that is "normal" for 
  me.
  

  As always, "life" and may your tomorrow be 
  beautiful and better than today.
  

  Richard H.  
  

  
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RE: [CMLHope] Shingles Vaccine Zostavax

[Pete Pabon]

What is your Drs. name

To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Shingles Vaccine Zostavax
From: cmlhope@googlegroups.com
Date: Wed, 10 Dec 2014 11:49:58 -0500

Hi Peter,




Just last visit with my onc specialist named Jessica Altman who is on staff a 
Northwestern Univ. of Chicago, she clearly told me that CML patients should NOT 
have the live virus for shingles.  Thank you for all the articles which 
basically substantiate this claim.  My doc (and Greenie's) is highly respected 
at Moffitt Cancer Center in Florida.  Since I do have a healthy immune system 
and am in remission, I would be a possible contender to receive it according to 
your articles below.  But I am not in favor of most vaccines, so will 
definitely go by my own doc's suggestion. This is just my take on the 
situation, and I know many may disagree.   And pray for God's protection 
against shingles for all of us!!!  Have a wonderful holiday season.




18's,


Susan F. Zimmerman








-Original Message-

From: Peter 

To: cmlhope 

Sent: Wed, Dec 10, 2014 11:06 am

Subject: [CMLHope] Shingles Vaccine Zostavax









Hi everybody.

Has anyone here received the shingles vaccine Zostavax?

The question is whether it is safe for CML patients. The info I have found is 
not 100% clear. The answers range from "should not" to "not recommended" to 
"may be given..". (See below)



Manufacturer (Merck)

http://www.merck.com/product/usa/pi_circulars/z/zostavax/zostavax_ppi.pdf

You should not get ZOSTAVAX if you have a weakened immune system (for example, 

an immune deficiency, leukemia, lymphoma, or HIV/AIDS). 



Public Health Canada

http://www.phac-aspc.gc.ca/publicat/cig-gci/p04-herp-zona-eng.php

HZ vaccine is contraindicated in people with immunodeficiency due to acute or 
chronic leukemia. However, persons with leukemia in remission and who have not 
received immunosuppressive chemotherapy or radiation for at least 3 months and 
who do not have defects in T cell function can receive HZ vaccine; consultation 
with an immunologist may be required.



Centers for Desease Control

http://www.cdc.gov/vaccines/hcp/vis/vis-statements/shingles.pdf

A person should not get shingles vaccine who cancer affecting the bone marrow 
or lymphatic 

system, such as leukemia or lymphoma.



Mayo Clinic

http://www.mayoclinic.org/diseases-conditions/shingles/expert-answers/shingles-vaccine/faq-20057859

The shingles vaccine isn't recommended if you have cancer that affects the bone 
marrow or lymphatic system, such as leukemia or lymphoma.



National CML Society

http://www.nationalcmlsociety.org/faq/immunizations

Using the most current infectious disease guidelines, Zostavax (shingles 
vaccine) may be given to CML patients who are stable and not experiencing any 
evidence of relapse or progression, and who do not have other immune 
suppressive issues such as recent requirements for high dose corticosteroids. 

Individuals with CML who have restored and stable immune systems are eligible 
to receive the shingles vaccine if APPROVED BY THEIR CML SPECIALIST, since it 
contains elements of live virus. It is safe, however, for family members or 
those in close contact with CML patients to receive the vaccination.








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RE: [CMLHope] Re: Millie

[Pete Pabon]

Chris my deepest condolences.Sleep Mighty Warrior

> From: ho...@ptd.net
> To: cmlhope@googlegroups.com
> Subject: Re: [CMLHope] Re: Millie
> Date: Thu, 3 Jul 2014 22:09:58 -0400
> 
> Hospice just called. Mom has passed.
> Chris
> 
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RE: [CMLHope] PCRU

[Pete Pabon]

Congratulations  13 yr SurvivorMerry Christmas and a Happy New Year to you. 

To: CMLHope@googlegroups.com
Subject: [CMLHope] PCRU
From: margoo...@aol.com
Date: Fri, 21 Dec 2012 13:05:42 -0500


Finally - PCRU after 3 3/4 years on Gleevec!  Thanks to all of you for your 
support, friendship and responses to my many questions.  I wish all of you a 
Merry Christmas and a New Year filled with all wonderful things.



Marcie




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RE: [CMLHope] Re: [cml 2] Fw: Neutropenia - How To Avoid Infections

[Pete Pabon]

yes

Date: Thu, 6 Sep 2012 09:59:26 -0600
Subject: Re: [CMLHope] Re: [cml 2] Fw: Neutropenia - How To Avoid Infections
From: ballroom...@gmail.com
To: cmlhope@googlegroups.com

Just curious; Does ANYONE see my messages? regardless of the content I never 
see a reply.I know that a lot of you seem to "know" each other as I read YOUR 
content, but either no ones sees myposts or I am just not "one" of the crowd.

Thanks,Michele

On Thu, Sep 6, 2012 at 9:34 AM,   wrote:






Richardthanks for sharing as well.  Hope you continue to do 
well!  Best, Tom
 

In a message dated 9/6/2012 12:09:59 A.M. Eastern Daylight Time, 
richard1huff...@comcast.net writes:

  Thanks for sharing.  I also use a simuluar version.  I susually 
  put it in when I post my results.
   
  
  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 .7 
  1/08
  Gleevec 1/08 
  -5/08
  Procrit 8/08-11/08 
  
  Gleevec Vacation 
  7/08-Pressent
  QT-PCR .3 
  4/09
  QT-PCR .15 6/09
  QT-PCR .21 9/09
  QT-PCR .28 1/10
  QT-PCR .1+ 4/10
  QT-PCR .468 10/10
  QT-PCR .468 2/22/11
  QT-PCR .323 8/23/011
  QT-PCR .261 
  2/14/2012
  QT-PCR .241 8/12/12
  Next QT-PCR 4/13
On Wednesday, September 5, 2012 10:22:07 AM 
  UTC-5, TEDBDD wrote:
  

Richard...nice work, I do the same thing with my blood work.  I 
also keep a shorthand version of my journey that I share with my Doc's 
which 
they say helps...particularly if you change Doc's or have to be treated in 
a 
new facility.  I have shared it before...but here it is.  I 
believe Zavie Miller, one of the original CMLers who has recently passed 
away, set up the format.  It is always helpful to see how others 
have made it to the presentso copy format and used it to share 
your journey as well if it suits you.   Here it is:
 
Tom Dunham, BD: 8/1941 Updated:6-13--12
DX CML 
12-23-2008
MDA Protocol: Tasigna-400mg; 2xday-1/09
On Flecainide for 
AF...still had frequent episodes
Q PCR bone@ 0.17 on 7/09
Acute 
Pancreatitis-7/5/09
Stopped Tasigna-7/13/09
Q PCRU blood-7-29-09 
!
Started Gleevec-400mg/day-7/31/09
Developed rash ~ 8/19/09
Rash 
treated with Steroids..improvement
Rash worsens~9/22/09
Stopped 
Gleevec-9/28/09
Restarted Gleevec @300mg/day-10/8/09
Stopped 
Gleevec-10/13/09-toxic rash\
AF returned infrequently
Q PCR 
bone-0.05
Started Sprycel @ 100mg/day-10/20/09
Some AF...increased 
FLecainde..1, 2x/day
Q PCR bone..0.07
Stopped Alcohol…no AF, ½ 
Flecainide 2x/day
Q PCR Blood…Non Detectible-12-13-10
Q PCR 
Bone..0.01--2-25-11
Q PCR Blood…Undetectible-5-19-11
Reduced 
Flecainide to 1/2 per day
Pleural and pericardial Effusion: stopped 
Sprycel-12-6-'11
Prednisone 50mg /day to combat PE; 12/14/'11 gradual 
reduction
Pleural Effusion clear 12-21-11
Started Sprycel 
70mg/day..12-23-11
QPR bone <0.01...2-16-12
Started Sprycel 
50mg/day..3-10-12
Chest pains...slightly more PL Eff 4-19-12
Steroid 
Dose pack to alleaviate..still on 50mgs
Change to 20 mgs/day 
Sprycel..4-26-12
Chest clear, effusion gone-5-14-12
Q-PCR 
Blood-Undetectible-6-13-12

Neuropathy moving up legs, weakness noted 
~7-12
Q-PCR Blood 
MDA-<0.01…8-21-12
 
 

In a message dated 9/5/2012 12:06:27 A.M. Eastern Daylight Time, 
richard...@comcast.net 
writes:

  My ONC carefully went over my first CBC and instructed me on 
  which readings he considered the most important.  When the PCR's 
  started he did the same thing.  He told me to never leave his 
  office without a copy for my records.  At about the 3 year 
  anniversary he made a comment about having to dig through my record to 
  make the comparisons so the next time I took him a copy of my 
  excel worksheet from the begtinning and ask him if he wanted a copy of my 
  workbook so he could modify it for other patients but he declined.  
  He was properly shocked and pleased that I tried to keep an easy 
  review of my records.
   
  Richard H.  
On Tuesday, September 4, 2012 4:19:29 PM 
  UTC-5, Jeanie wrote:
  

Thanks Skip, My onc doesn't ever talk about my blood counts with 
me.  I have to ask him for a printout.  I just don't 
understand him at all.  I do keep track of all that as they sure 
don't seem to. Hang in there.
Jeanie<3
 

In a message dated 9/1/2012 9:20:20 A.M. Eastern Daylight Time, 
skipd...@yahoo.com writes:

  
  Great Article Lottie,
  and 
  the things it tells you to avoid are exactly what has been told 
  to me, at least once or twice 
  a 
  month.  My blood reports tell me I have Leukopenia, Neutropenia, 
  and Thrombocytopenia.
   

RE: [CMLHope] Side effects

[Pete Pabon]

I have been on Gleevec for 10 yrs and once in a while I start feeling Nausea. 
It comes and goes. 

From: myvet...@aol.com
Date: Sun, 11 Mar 2012 11:56:04 -0400
Subject: [CMLHope] Side effects
To: cmlhope@googlegroups.com








Hi group, Question, for the last few days I have been getting 
nausea which leads to and anxiety attacks.  I've had this problem before 
back in 2006 when I was living in Springfield, MO.  I was putting a deck on 
the back of our house and the heat was 98 deg. and heat index was 114.  I 
ended up with a heat exhaustion.  Then anxiety along with nausea.  The 
nausea went on for over 2 years and I would complain to my Doctor in Chicago 
and 
they would say you have been on Gleevec for over 5 years theirs no way you can 
have problems with nausea now.  
 
Some members of our group sent me emails that the same thing 
happened to them.  One day I woke up and the nausea just stopped and never 
came back, put I still have the anxiety problem to this day. 
 
Well the last few days it has hit me again for no 
reason.  I have and appointment with and Oncologist the 20nd of this 
month.  I think I'm going to take a two week vacation from Gleevec and see 
if things improve.
 
If anyone else has had this problem before please let me 
know.
 
Thanks,
 
greenie



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RE: [CMLHope] Gleevac

[Pete Pabon]

 Has anyone had a problem with High protein in the Urine?



From: myvet...@aol.com
Date: Wed, 26 Jan 2011 12:42:54 -0500
Subject: Re: [CMLHope] Gleevac
To: cmlhope@googlegroups.com








Hi group,  I have a question.  Has anyone had a 
problem about getting to much sun.  Over heated while 
taking Gleevec.  I had a problem a few years ago with heat exhaustion 
and got a little to much sun a few days ago, just don't feel that great.  I 
know they don't mix every well.
 
Greenie



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RE: [CMLHope] Re: Price of Gleevec keeps going up

[Pete Pabon]

Always good to hear from a long time survivor. I'll be going on 11 yrs. God 
Bless




"If half a century of living has taught me anything at all, it has taught me 
that nothing can bring you peace but yourself."






Good evening all, hope everyone had a wonderful new years.
I am 33 year survivor and the cost of keeping me alive in 2009, 
was 143,000 for the year, not counting the many many 
transfusions of Hgb and Plts,  the trips to the hospitals etc
Single handed I am putting Canada's Health care in the red.
My military pension insurance plan is crying ouch.
 
The only thing I wish I could do is to thank all those who donate 
platelets and Hgb every week for me, I get single (Apheresis) donor platlets
and it takes around four hours for someone to give them.  How do you thank 
people for that.. I use to give blood but it was just to get the afternoon off.
 
 
SkipD 33year survivor CML

  

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RE: [CMLHope] Re: Hi Greenie

[Pete Pabon]

Hi Nadia, My name is Pete and I see Dr Paul Chervenick at Moffitt. I was Diag 
in 99 and have been seeing him for the last 5 yrs. I am very happy with him.





 


 



From: nadia...@earthlink.net
To: cmlhope@googlegroups.com
Subject: RE: [CMLHope] Re: Hi Greenie
Date: Mon, 5 Jul 2010 19:32:26 -0400





Hi Jeanie:  My name is Nadia and I just moved to Florida in Winter Haven.  I’d 
like to go to Moffit ,
but I don’t know the right Hematologist. Can you recommend yours?   And if you 
can would you
give me his name please?  I’ve been diagnosed with CML since 8/2006, and am on 
Gleevac , 300/mg
 a day and feeling good. Thank you and thanks to all of you. Your mail has been 
a big help. 
 
Thanks
 


From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of 
icandoall...@aol.com
Sent: Monday, July 05, 2010 6:25 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Re: Hi Greenie
 

Good luck on your move to Florida.  I'm a Florida Cracker so I love it.

What doctor will you go to in Florida.

I go to Moffitt Cancer Center.

Blessings,

Jeanie<3

 


In a message dated 7/2/2010 11:43:19 A.M. Pacific Daylight Time, 
myvet...@aol.com writes:


Hi Suzieq,  Port Richey is nice, we checked it out put my brother wants us to 
move his way. Sorry, we are not looking for a house.  We are looking to rent, 
condo, etc. No more up keep, would like to find some folks in our age group. 
Not much into golf, but we do like to go fishing.  Grace likes just to be near 
water and I like to check out the babes (smile). I'll be 71 on July 22nd, my 
body no's it's 71 but my mind thinks it's 21.  We are selling all our 
belongings and just taking our cloths, and of course my fishing gear.  

 

This part is for the guys, one thing that did happen to me yesterday is my wife 
gives me a shot of testosterone every Wednesday.  I've been back on the shots 
for almost two months.  About 30 min. after my shot I started to get fatigue 
and I do mean fatigue, it lasted all day into the night.  Then it went away 
almost as fast as it started.  This is the third time in the last 2 months.  I 
know this is not a women thing but maybe one of the guys out their may have had 
this same thing happen to them.  I use to take a gel each day but that didn't 
do much for me, always had a lack of energy, etc.  When I first started STI-571 
in 2000 my study at Northwestern I was on the shots and never had a problem, 
now 9 years later something new.  I still think that their are things out their 
that they don't know what side effects and others drugs will not mix with 
Gleevec. I called my nurse this morning and told her what happened and her 
reply was take the shot before bed time and sleep through the fatigue.  WOMEN, 
they just don't understand us men. (smile)  Greenie

 


In a message dated 7/1/2010 4:11:15 P.M. Central Daylight Time, 
sheila.a.wat...@gmail.com writes:

Greenie:

If you want to live a little further up the coast line,  my mom still
has her house in
Port Richey, Fl.   It's north of Tampa off Hwy. 19.  It's not far from
Hudson Beach, so that's
a plus.   She still wants to sell it, if you're interested.
It's not on the market right now.
she plans to go back down in a few months and get it ready to list
once again.  Her house
sits on a corner lot..has nice full size treesan extremely
nice retired elderly couple
across the street from her that always helps with anything she needs.
Course, you'll might looking more for a condo or something.and be
closer to your
brother.  This is a wee bit back up the other way.  Anyway, just
wanted to let you
know.  Are you'll gonna be going to do this just through the winter
time and then
go back up North in the summer months?

Suzieq

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RE: [CMLHope] Re: I wrote to Sheila offline to spare her embarrassment

[Pete Pabon]

Here we go again!!!





 


 

> Date: Fri, 2 Jul 2010 07:15:08 -0700
> Subject: [CMLHope] Re: I wrote to Sheila offline to spare her embarrassment
> From: dsh...@midwaynet.net
> To: cmlhope@googlegroups.com
> 
> You really crack me up that you posted this for everyone to see. Like
> I told you this does not embarass me, and no I wasn't having a bad day
> I was actually having an awesome day. I don't know how you don't
> think that the first e-mail you sent me was agressive??? All I was
> doing why trying to give Greenie some inside on Dr. Talpaz and then
> you come along and tell me that I don't kow what I'm talking about
> when I was told by Zavie a few years back (and I'm really sure I could
> find the e-mail) that Talpaz was on the gleevec team, plus Talpaz told
> me himself...and I wasn't personally calling Zavie a liar (sorry if
> that's the way you took it Zavie and Marty) I was asking you Susan if
> you thought he was a liar, sorry if you can't understand my sarcasm.
> I used to find his group helpful and now all it is is people
> constantly nit picking everything, what a joke anymore! Also you
> didn't post my last e-mail to you yesterday so I will paste it here,
> don't want to leave anything out do we? Since I'm such a mean
> agressive person :)
> 
> To: educatorsu...@aol.com
> Subject: Re: about your comment on Dr. Talpaz
> 
> Is this a threat...WOW grow up and if you feel the need to post this
> so go right ahead I really don't care and if you think this would be
> embarrass me you are so wrong. What a joke you are and I thought
> this site was something good well with people like you "lurking" I
> guess I was wrong. Like I said grow up and if you feel like
> "tattling" on me to the group because apparently you know it go right
> ahead :)
> 
> 
> 
> 
> 
> 
> 
> 
> 
> On Jul 1, 1:06 pm, educatorsusan  wrote:
> > Dear Everyone:
> >
> > I need a little help here.  I responded to Sheila privately to spare
> > her anything embarrassing.  However, she was VERY aggressive and I
> > HAVE NEVER been treated like this before.  I conferred with Zavie as
> > well and he semi-agreed with me...let me know what you think and how I
> > could do better the next time.  Like I said, I have NEVER been told
> > anything negative and my last email to Sheila was that I was going to
> > have to bring this to the group.
> >
> > This is pasted from the emails sent (my original comments should be
> > read from the bottom up so you are current with the whole
> > conversation:
> >
> > Sheila:
> >
> > You are going to force me to send this whole correspondence to the
> > CMLHOPE group.  This is not even funny.  I am sorry that you feel this
> > way about me.
> >
> > Hugs,
> > Susan
> >
> > In a message dated 7/1/2010 11:32:54 A.M. Eastern Daylight 
> > Time,dsh...@midwaynet.net writes:
> >
> > Not really being polite in my book.  Zavie Miller told me he was on
> > the team that invented gleevec so I guess now he's lieing...whatever
> > really don't care. Like I said I'll never reply again to a post.  You
> > came off as being a no it all bitch...sorry
> >
> >
> >
> > ---Original Message---
> >
> > From: educatorsu...@aol.com
> > Date: 7/1/2010 10:25:58 AM
> > To: dsh...@midwaynet.net
> > Subject: Re: about your comment on Dr. Talpaz
> >
> > Sheila:
> >
> > I was being polite.  I was not "ass chewing".  I am a "lurker" on the
> > group and keep up daily with the digests.  I know that you are proud
> > that he is your doctor.  I just wanted you to be informed.  "Ass
> > Chewing" would have been replying via the digest...I thought I was
> > being considerate...
> >
> > Hugs,
> > Susan
> >
> > In a message dated 6/30/2010 1:14:52 P.M. Eastern Daylight Time,
> > dsh...@midwaynet.net writes:
> > OK  I didn't mean to get an ass chewing...I was told by someone
> > else in the group a few years back that he was involved SORRY, guess I
> > won't be posting anything again, just trying to help a fellow CMLer
> > along
> >
> > ---Original Message---
> >
> > From: educatorsu...@aol.com
> > Date: 6/30/2010 11:00:12 AM
> > To: dsh...@midwaynet.net
> > Subject: about your comment on Dr. Talpaz
> >
> > Sheila:
> >
> > Dr. Talpaz did not NOR did he have any input on the development of
> > Gleevec.  His main focus was the old drug Interferon, of which he is
> > still experimenting with this drug to help Gleevec along.
> >
> > The only way Dr. Moshe Talpaz became involved was when at MD Anderson,
> > he chose to become involved since he realized his pet, Interferon, was
> > going nowhere fast!!!  This is the scoop!
> >
> > I did not want to embarrass you in front of the group so I am choosing
> > to just email you privately.
> >
> > I just thought I would give you a little bit of history.  This does
> > not make Dr. Talpaz in my opinion any less of a doctor...BUT he had NO
> > INVOLVEMENT in the trials with Gleevec.
> >
> > Hugs,
> > Susan Rosenthal
> >
> > AGAIN, please advise me as to

RE: [CMLHope] Re: Neighbors--Marcie & Helene

[Pete Pabon]

Just a hint to the wise NEVER put your personal phone #'s on a E-mail.





 


 

> From: seloe...@cox.net
> To: cmlhope@googlegroups.com
> Subject: Re: [CMLHope] Re: Neighbors--Marcie & Helene
> Date: Fri, 9 Apr 2010 18:19:48 -0400
> 
> Ditto! My home phone number is 703-573-4029. You can reach me there until 
> noon then on my cell at 703-585-2412.
> 
> Susan
> - Original Message - 
> From: "Helene Tauler" 
> To: "CMLHope" 
> Sent: Friday, April 09, 2010 5:04 PM
> Subject: [CMLHope] Re: Neighbors--Marcie & Helene
> 
> 
> susan-- I will see you tomorrow. you have my cell number-- please
> call if your plans change!
> 
> On Mar 31, 7:43 am, "seloew12"  wrote:
> > Hi Ladies,
> >
> > I believe that we have agreed to meet at 1 p.m. on Saturday, April 10 at 
> > La Madeleine Restaurant, 500 King Street, Alexandria, VA.
> >
> > I look forward to meeting you both and anyone else you bring with you!
> >
> > Susan
> 
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RE: [CMLHope] Anyone gone off medication after remission?

[Pete Pabon]

I have also discussed coming off Gleevec. I have been in remission 8 yrs but my 
doctor felt I should stay on.





 


 

> Date: Fri, 12 Feb 2010 07:03:00 -0800
> Subject: [CMLHope] Anyone gone off medication after remission?
> From: ansaris...@gmail.com
> To: cmlhope@googlegroups.com
> 
> Hi All,
> I have been on Gleevec since 2001 and now in complete remission.
> My doctor mentioned during my last visit that some patients have gone
> off medication completely after being in remission for more than 2
> years. I am doing fne with Gleevec and am wondering if it is risky to
> stop it now? Any one on this list stopped medication after remission?
> Best Regards,
> Syed
> 
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RE: [CMLHope] An Update about the Recent CT Scan

[Pete Pabon]

I have had the same pain in the left side for years. It comes and goes. I have 
had Ct scan xrays all kinds of test and they keep telling me they can't find 
anything. Good Luck





 


 

> Date: Tue, 9 Feb 2010 11:33:17 -0800
> Subject: [CMLHope] An Update about the Recent CT Scan
> From: sheila.a.wat...@gmail.com
> To: cmlhope@googlegroups.com
> 
> Doc let me know that nothing showed up abnormally with the spleen that
> would be causing me the pain in the left side that I've been
> complaining of these past six years after being dx'ed. They wanted to
> discuss amongst themselves as to where to go next..which, I am
> certain will most likely be the Colonoscopy. I am also getting more
> and more certain that it will come down to the Diversticulitis or
> something on that order to do with what I eat. I've been paying close
> attention to my diet and how certain things make me feel. And, since
> my husband & I started back on the "lo-carb" diet at the beginning of
> the year, I notice that I don't have the pain so much as when eating
> regular. I remembered noticing this before when we did the Atkin's
> diet. But, I just kept on blaming it on "spleen pain", LOL! I
> decided that I will go ahead and go through the testing just to know
> 100% sure where the pain is coming from and do whatever it takes to
> stop it. Even if it means not eating some of those "favorite" things
> like tomatoes. :(
> 
> Still waiting for the genetics test which she said was in the mail,
> but she did say they were "good". Whoo-hoo!! Will share once they
> arrive.
> 
> Pat, I am so sorry that you've struggled so with the Gleevec. I do
> believe if I were you, I would go ahead and be changing to something
> else and see if those nasty side effects got under control. Mine are
> not so severeI was up in the night last night taking something for
> the bone pain in the lower legs, but I am having more "good" days
> than "bad" lately. So, for that I am very Thankful. You hang in
> there, & talk with the doctors more about trying something else.
> 
> Keep Looking Up,
> Suzieq
> 
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[CMLHope] Moffitt

[Pete Pabon]

I am also a patient at Moffitt. My Dr. is Dr Paul Chervenick




 


 



Date: Thu, 7 Jan 2010 09:19:09 -0500
Subject: Re: [CMLHope] Sprycel and Tylenol
From: tina...@gmail.com
To: cmlhope@googlegroups.com

Jeanie,
 I am also a patient at Moffitt Cancer Center. It sure is a small world. =). 

I have also been told by my doctor that tylenol is fine, however that advil is 
easier on the liver. Like Jeanie said all drugs hurt your liver, so we take a 
risk everyday. 

Best of luck to you,
 Tina


On Wed, Jan 6, 2010 at 4:33 PM,  wrote:



Hi my onc at Moffit Cancer Center told me I could take Tylenol.
Just don't take it to excess.
I've always used Tylenol, but I have to admit, the advil works good on pain.
ALL drugs hurt your liver-but we need them for pain and etc.
Good luck
Jeanie<3
 

In a message dated 12/14/2009 4:28:48 A.M. Pacific Standard Time, 
vkrei...@gmail.com writes:

Everyone who is on Gleevec has been told not to take Tylenol.
Is Sprycel different in that regard?
When Tasigna becomes readily available, or the drug of choice, will Tylenol be 
taboo?
Happy Holidays to everyone. 

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RE: [CMLHope] Skip Duffie

[Pete Pabon]

My prayers are with Skip.





 


 



Date: Tue, 24 Nov 2009 18:49:19 -0800
From: maggy...@bellsouth.net
Subject: Re: [CMLHope] Skip Duffie
To: cmlhope@googlegroups.com





Sending a prayer out to Skip !

--- On Sat, 11/21/09, Zavie Miller  wrote:


From: Zavie Miller 
Subject: [CMLHope] Skip Duffie
To: c...@yahoogroups.com, CMLHope@googlegroups.com
Date: Saturday, November 21, 2009, 1:09 PM






Hi all,
 
I spoke with Skip this morning and he asked me report on how he is doing. When 
I spoke to him a couple of weeks ago he was in really bad shape. I didn’t think 
he was going to make it. Today sounded well and back to his old self.

 

At the moment he is off all medications waiting for what is left of his marrow 
to recover. It turned out that it was the Exjade side effects that were causing 
him most of his problems.

 

Here are some of his current counts. They are not in error. WBC = 0.5, 
Platelets, 4.0 and Hemoglobin=80. He is still transfusion dependent, but not as 
often as the past couple of months.

 

His case was presented to a panel doctors with Dr. David Marin from Hammersmith 
moderating the session. One of the doctor’s opinion was that this patient 
should be dead.

 

Dr. Marin has suggested that he go off all treatment to give his blood and 
marrow a chance to recover. This has helped dramatically and we will see what 
the future brings. Dr. Marin doesn’t think he should be subjected to any of the 
CML drugs.

 

Skip has had CML for over 32 years.

 

Zavie

 

 

 

Zavie Miller (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: zmil...@sympatico.ca

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

Yahoo ID: zaviem

 


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[CMLHope] Re: Kelly

[Pete Pabon]

Dear ICANDOALLTTC, PRAISE THE LORD





 


 



From: icandoall...@aol.com
Date: Sun, 18 Oct 2009 18:31:30 -0400
Subject: [CMLHope] Re: Kelly
To: cmlhope@googlegroups.com



Jesus is real, and for us who believe in Him have the right to talk about Him 
and sing His praises all day long if we want.  That's our religious freedom 
that our forefathers fought and died for, but I respect that you don't believe 
and pray that someday you will.  I could not go through one day without Jesus.  
He's my Saviour and my closest friend.
Blessings to all on this list and keep up the good fight CML WARRIORS
Jeanie<3
 
In a message dated 10/18/2009 12:43:41 A.M. Eastern Daylight Time, 
jbals...@gmail.com writes:
It's not for people to get on their soap boxes and sing the praises of  
Jesus either. Not everyone believes in what you do.


 


  
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[CMLHope] Re: Kelly

[Pete Pabon]

Here we go again





 


 

> From: jbals...@gmail.com
> To: cmlhope@googlegroups.com
> Subject: [CMLHope] Re: Kelly
> Date: Sat, 17 Oct 2009 17:39:53 -0700
> CC: cmlhope@googlegroups.com
> 
> 
> It's not for people to get on their soap boxes and sing the praises of 
> Jesus either. Not everyone believes in what you do.
> 
> Sent from my iPhone
> 
> On Oct 17, 2009, at 4:33 PM, "John Kuptz"  wrote:
> 
> >
> > Dear Cindy,
> > You sound very bitter against religion. I am so sorry to hear that in
> > anyones voice. I am just another
> > CML Warrior but through God's Grace I am in PCRU and still here to 
> > sing
> > Jesus praises. It has not be easy and I have had to rely on Jesus 
> > and His
> > healing power to get my husband and I through some very tough 
> > times. I fear
> > that the CML group is becoming a political forum and that is not the 
> > purpose
> > for it. The website is for CML warriors and their loved ones. It's 
> > purpose
> > is to uphold and be of comfort and friendship to all. It is not 
> > meant for
> > peolpe to get on their soap boxes and spout out against the 
> > government or
> > religions. I for one would not be here without Gods help and the 
> > modern
> > miracle drugs. I will pray for you that your heart softens toward 
> > Jesus and
> > His loving care.
> > God Bless you and yours.
> > carolyn_kuptz2...@yahoo.com
> > dx 11-05
> > PCRU for almost 2 years.
> > - Original Message -
> > From: "Cindy" 
> > To: 
> > Sent: Saturday, October 17, 2009 4:44 PM
> > Subject: [CMLHope] Kelly
> >
> >
> >>
> >> To have even more seperation of church and state, we should
> >> starttaxing religious properties IMO. Also, close all those faith
> >> based initive offices in our federal offices (that bush created), and
> >> use the tax money for healthcare. I don't like any of my tax money
> >> being filtered off into religious org's. It's just bribe money to
> >> brainwash members.
> >> We are the only country in the world that profits off the sick and
> >> dying. How religious is that?
> >> Cindy
> >> Sent from my iPhone
> >>
> >>>
> >>
> >
> >
> >
> > >
> 
> > 
  
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[CMLHope] Re: Gleevec

[Pete Pabon]

I have been on Gleevec going on 8 yrs. I have experience all of the side 
effects and thru this group I have learned to deal with most side effects. 80% 
of my info has come from this group. Recently  I had problems with Gastritis 
and my Dr. Whom was married to A leukemia specialist recommended  to me to try 
CITRUCEl smartfiber for my problem with diarrhea. I have been taking  a glass a 
day and have no more problems. For those with problems with Diarrhea, try this 
it may work for you.



 

Date: Tue, 20 Jan 2009 04:41:25 -0800From: donalddonof...@sbcglobal.netsubject: 
[CMLHope] Re: GleevecTo: CMLHope@googlegroups.com



My wife have been on Gleevec sine phase three of the trials. She is doing fine 
except she has had a weight loss of 35 pounds and has a lot of diarrhea.
Don Donofrio--- On Mon, 1/19/09, dstuede...@aol.com  wrote:
From: dstuede...@aol.com Subject: [CMLHope] GleevecTo: 
cmlh...@googlegroups.comdate: Monday, January 19, 2009, 4:54 PM

Greenie,
My husband, Jim, has also  been on the capsule for eight years, and was just 
changed the beginning of January to the tablet.  His blood work was the same as 
always at the end of last week.  He feels the same, but seems to have more 
night sweats.  The interferon was nasty to him before he was able to get on the 
Gleevec trial at MD Anderson.  I guess no more BMB are needed...which kinda 
bothers me.  I'll let you know if he encounters anything unusual with this 
change.
Debby


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[CMLHope] Re: Interesting Onc. visit last Monday

[Pete Pabon]

I drink a small bottle of gatorade, it works for me



 > Date: Thu, 20 Nov 2008 09:01:18 -0800> Subject: [CMLHope] Re: Interesting 
 > Onc. visit last Monday> From: [EMAIL PROTECTED]> To: 
 > CMLHope@googlegroups.com> > > > > With respect to cramps, I've found that 
 > drinking at least 16 ounces of> tonic water a day seems to keep me from 
 > having cramps. I use diet> tonic to avoid the extra calories. Perry> > 
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[CMLHope] Re: Low Platelets

[Pete Pabon]

Just like to add. I've been on Gleevec 8 yrs. and they have always been low.



 

From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: [CMLHope] Re: Low PlateletsDate: 
Fri, 29 Aug 2008 14:11:44 -0400


My platelets have always been low. 100-112 My Onc. in Moffitt tells me not to 
worry but I do.



 

Date: Thu, 28 Aug 2008 12:19:04 -0700From: [EMAIL PROTECTED]: [CMLHope] Re: Low 
PlateletsTo: CMLHope@googlegroups.com



Hi Greenie:  I love to see your posts.  God Bless You for all the things your 
fighting.  My count is down to 109.  It was up in the 200's all this time.  I 
am waiting for my oncologist to send me some kind of slips for tests he wants 
me to do.  I could have gone to his office by now to pick them up.  I see your 
moving.  Lots of Luck, and may God give you new promising improvements in your 
new house.--- On Thu, 8/28/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote:
From: [EMAIL PROTECTED] <[EMAIL PROTECTED]>Subject: [CMLHope] Re: Low 
PlateletsTo: [EMAIL PROTECTED]: Thursday, August 28, 2008, 1:38 PM

Suzzie,
 
I don't know if this will help but my Platelet count is in a range of 152 to 
202 most of the time.
 
 
greenie


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[CMLHope] Re: Low Platelets

[Pete Pabon]

My platelets have always been low. 100-112 My Onc. in Moffitt tells me not to 
worry but I do.



 

Date: Thu, 28 Aug 2008 12:19:04 -0700From: [EMAIL PROTECTED]: [CMLHope] Re: Low 
PlateletsTo: CMLHope@googlegroups.com



Hi Greenie:  I love to see your posts.  God Bless You for all the things your 
fighting.  My count is down to 109.  It was up in the 200's all this time.  I 
am waiting for my oncologist to send me some kind of slips for tests he wants 
me to do.  I could have gone to his office by now to pick them up.  I see your 
moving.  Lots of Luck, and may God give you new promising improvements in your 
new house.--- On Thu, 8/28/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote:
From: [EMAIL PROTECTED] <[EMAIL PROTECTED]>Subject: [CMLHope] Re: Low 
PlateletsTo: [EMAIL PROTECTED]: Thursday, August 28, 2008, 1:38 PM

Suzzie,
 
I don't know if this will help but my Platelet count is in a range of 152 to 
202 most of the time.
 
 
greenie


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[CMLHope] Re: UDDER CREAM

[Pete Pabon]

I found the udder cream at walmarts. It works really well. 



 

Date: Sat, 9 Aug 2008 03:07:40 -0700From: [EMAIL PROTECTED]: [CMLHope] UDDER 
CREAMTo: CMLHope@googlegroups.com




Hey Sister & Brother Survivors. . .
FYI~~my 2 cents only
During my adjustment to Gleevec, after trying 5 anti-nausea medications; Zofran 
was the only medication that worked for me.
I found the 'udder cream' at Wally World~~WalMart.

"K"
"I AIN'T FINISHED YET"!!!http://cmlhope.com
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[CMLHope] Re: chapped lips pills in the morning

[Pete Pabon]

I find that the bigger to breakfast the better I deal with the Gleevec. I eat 
ham & eggs with homefries. I have tried cereal but it dosen't help. I also have 
tried everytning for my lips but nothing seems to work. I'm happy to see these 
feedbacks on side effects. It helps to know your not alone.



 

From: [EMAIL PROTECTED]: Tue, 5 Aug 2008 16:51:56 -0400Subject: [CMLHope] 
chapped lips pills in the morningTo: CMLHope@googlegroups.com


Hi Pete, I also take mine in the morning with a large bk.  I have tried every 
other time of the day, and I find that morning seems to be the right one for 
me.  Trying to come up with some good breakfast ideas is hard for me as I never 
ate a large bk; just toast and coffee.
What do you have?
I don't have reflux, but do have feeling of being full at times.
My lips are a mess.  When I put on lipstick, it looks terrible because of the 
peeling.
I have tried everything for it; cheap and expensive.
Blessings,
Jeanie<3
In a message dated 8/5/2008 1:42:26 P.M. Pacific Daylight Time, [EMAIL 
PROTECTED] writes:
Hi suzzie, I always take it in the morning with a big breakfast. Sometimes I 
feel fine and sometimes I get nausea. Funny I also developed reflux. I also 
noticed I have had a problem with constant chapped lips.
Pete

 


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[CMLHope] Re: Cialis

[Pete Pabon]

Hi suzzie, I always take it in the morning with a big breakfast. Sometimes I 
feel fine and sometimes I get nausea. Funny I also developed reflux. I also 
noticed I have had a problem with constant chapped lips.
Pete



 

Date: Mon, 4 Aug 2008 12:44:12 -0700From: [EMAIL PROTECTED]: [CMLHope] Re: 
CialisTo: CMLHope@googlegroups.com




Hi Pete:  I have been on Gleevec since 2000, and I have had bouts of nausea on 
and off.  I find its not as often as it used to be.  I take my Gleevec every 
morning with a decent breakfast, and then I am fine.  If I just grab some toast 
and coffee, sometimes I get nausea.
I think with Gleevec you need some real food in your stomach before you take 
it.  I have also developed reflux since the Gleevec, and I am on Nexium for 
that.  I guess we could be getting a lot of side effects from the Gleevec.  
Good Luck.

Suzzie--- On Mon, 8/4/08, Pete Pabon <[EMAIL PROTECTED]> wrote:
From: Pete Pabon <[EMAIL PROTECTED]>Subject: [CMLHope] Re: CialisTo: [EMAIL 
PROTECTED]: Monday, August 4, 2008, 12:33 PM


After 8 yrs of gleevec I still have Nausea. My oncol. tells me its not the 
Gleevec  but I tend to differ.



 

From: [EMAIL PROTECTED]: Mon, 4 Aug 2008 11:18:17 -0400Subject: [CMLHope] Re: 
CialisTo: CMLHope@googlegroups.com
Hi Gang,
 
 
Woke up around 7 a.m. Saturday and within 5 minutes I got hammer with a big 
dose of Nausea.  Took my Nausea pill and waited.  I mean it was bad.  Grace 
took me ER thinking it was something else.  I haven't had any Nausea problems 
for quite awhile.  The was a waste of money.  Everything checked out O. K.  My 
Glucose was a little high 112 and I had nothing to eat or drink that had sugar 
in it.  Went to bed at 10:00, had small glass of water and that was it.  The 
nausea finally went away and they let me go home.  But I felt like jelly the 
rest of the day.  Had  some 7 up and crackers and hit the sack at 10:00.pm. 
 
Woke up this morning no Nausea but a little weak from not eating all day.  I 
guess the Nausea is back it just comes and goes, I just wish it would do more 
goes then comes.  I don't even call Chicago Northwestern they keep telling me 
that after being on Gleevec so long it's no way it can be that.  I got news for 
them.  
 
Take care
 
Greenie
 
 
 


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[CMLHope] Re: Cialis

[Pete Pabon]

After 8 yrs of gleevec I still have Nausea. My oncol. tells me its not the 
Gleevec  but I tend to differ.



 

From: [EMAIL PROTECTED]: Mon, 4 Aug 2008 11:18:17 -0400Subject: [CMLHope] Re: 
CialisTo: CMLHope@googlegroups.com

Hi Gang,
 
 
Woke up around 7 a.m. Saturday and within 5 minutes I got hammer with a big 
dose of Nausea.  Took my Nausea pill and waited.  I mean it was bad.  Grace 
took me ER thinking it was something else.  I haven't had any Nausea problems 
for quite awhile.  The was a waste of money.  Everything checked out O. K.  My 
Glucose was a little high 112 and I had nothing to eat or drink that had sugar 
in it.  Went to bed at 10:00, had small glass of water and that was it.  The 
nausea finally went away and they let me go home.  But I felt like jelly the 
rest of the day.  Had  some 7 up and crackers and hit the sack at 10:00.pm. 
 
Woke up this morning no Nausea but a little weak from not eating all day.  I 
guess the Nausea is back it just comes and goes, I just wish it would do more 
goes then comes.  I don't even call Chicago Northwestern they keep telling me 
that after being on Gleevec so long it's no way it can be that.  I got news for 
them.  
 
Take care
 
Greenie
 
 
 


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[CMLHope] Re: Mission Days in DC--and a challenge for US citizens

[Pete Pabon]

Dorothy,please send me a copy of the letter



 


From: [EMAIL PROTECTED]: [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL 
PROTECTED]: [CMLHope] Mission Days in DC--and a challenge for US citizensDate: 
Thu, 10 Apr 2008 18:30:14 -0400Hi gang, 

I spent Sunday, Monday and Tuesday in Washington DC for the Leukemia & Lymphoma 
Society Mission Days and while I'm still fired up (this event really does that) 
I want to tell you about this and offer a challenge.

This was my third annual trip to DC to do advocacy for the LLS.  There were 
about 250-300 of us that spent a day or two preparing and then a whole day on 
Capitol Hill meeting with our senators and representatives (or their staff) 
asking primarily for funding for research for blood cancers.   Most of the 
executive directors of the LLS chapters from around the US were there in 
addition to a number of volunteers (like myself).   There were a number of us 
CML survivors there--I think we are luckier than a lot of people with other 
blood cancers so we feel like we need to give back.  I had the pleasure of 
meeting Jonathan from Rhode Island who was diagnosed in 2006.  You can check 
out his blog where he has written about Mission Days 
http://jongershon.blogspot.com

Just to give some background--we all want cures and we all want research to 
move along.  The basic research for CML that we are all familiar with because 
we wait each year for results from ASH etc. is funded by two main sources--our 
US government and the LLS.  The LLS has a lot of amazing people and volunteers 
working very hard to raise money but they can only afford to fund 15-20% of the 
very top notch research at the very top centers.  (There's a lot of other good 
research that doesn't even make it into consideration at the LLS.)  The largest 
part of the remaining 80-85% must come primarily from our tax dollars--either 
that or we just wait another 100 years or more for progress.  Drug companies do 
spend on research as well but not as much as they would have you believe and 
they don't really spend on basic research.   From 1998 thru 2003 we did have a 
large increase in funding for the NIH and NCI (the two government institutions 
responsible for funding research)--in fact funding doubled during that time.  I 
don't think it's an accident that at the end of that time period we saw for the 
first time in history an actual annual decrease in cancer deaths.  That 
decrease lasted 2 years.  For the past 5 years we have seen cuts each year in 
funding (and the cancer death rate stopped declining last year).  Labs have 
shut down and research has been impacted.  For those of you who listened to the 
latest CML teleconference from Dr. Druker--you might have noticed that he said 
if there was a take home message it was that we needed more funding.  This is 
something the entire science community is very concerned about.  

This year the LLS is asking for a 6.5% increase in funding for the NIH and a 
9.5% increase in funding for the NCI.  All the different cancer organizations 
got together and decided how much to ask for so that we would all bring the 
same message.  Each week a different group has visits like we had this week in 
congress and we are all asking for the same increase.  These increases are just 
enough to keep even with inflation--without this amount there will need to be 
cuts in research.

I live in a state and area that are very conservative and the past two years 
we've had very little sympathy for our request for increased funding.  We've 
been a "can't do" country.  We've been told over and over that we can't afford 
to do this funding anymore.  My own congressman says that this needs to be 
picked up by the private sector (we all know that won't happen but it sounds 
good).  We were in for a big surprise this year as we went to our senators' 
offices.  Both of our senators had signed on to a letter going around the 
senate which was asking for a 8.5% increase for the NIH (remember we were 
asking for 6.5%)--we were told the day before that there wasn't any letter or 
support yet.  The letter didn't support any increase for the NCI but they said 
some of the funds from the NIH budget would go to the NCI.  The NIH budget is 
quite a bit larger than the NCI budget so there might be enough with this 
increase to fund the NCI to the extent that is needed.  We were all very 
pleasantly surprised and I talked with people from other states and they were 
all getting the same response.  I don't know if the change is because it's an 
election year or if they've decided this would jump start the economy but I'll 
take it if it indeed comes thru.  But--this doesn't mean it will actually 
happen.  We still need to hold their feet to the fire so to speak.  It just 
means our chances are much better than we expected.  It was nice to leave 
Washington actually feeling like we might get some of our "asks" instead of 
getting nothing at all like we have been getting the past couple y

[CMLHope] Re: Celebrating 3 Years

[Pete Pabon]

 





I use to get bad cramps. I drink gatorade every day and the cramps have gone 
away.


 


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[CMLHope] Re: Cold Extremities

[Pete Pabon]

I also suffered from the cold. I started taking B-12 shots every month and the 
cold feeling has gone away.



 

> From: [EMAIL PROTECTED]> To: CMLHope@googlegroups.com> Subject: [CMLHope] 
> Cold Extremities> Date: Wed, 31 Oct 2007 19:57:56 -0700> > > Hi, everyone.> 
> My husband has CML, and has been on Gleevec for 2 months now. He> is cold all 
> the time! His hands and fingers ( extremities) are always> cold. (We live in 
> South Florida where the temperature is around 80> degrees or higher!) We are 
> not sure if this is due to the Gleevec or> the fact that he is slightly 
> anemic. We are curious to know if anyone> else has experienced this. Thank 
> you for your help and for being a> wonderful source of information!> Wishing 
> you all the best.> > Lee> > > > 
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[CMLHope] Re: Hello to All

[Pete Pabon]

Hi Sue, I am 60 yrs old and was Diag in 1999. I have been in remission for yrs. 
My DR claims there hasn't been any signs of Phillies for years. I read your 
message and truer words have never been spoken. I feel exactly as U do. Thanks 
for making my day.



 > From: [EMAIL PROTECTED]> To: CMLHope@googlegroups.com> Subject: [CMLHope] 
 > Re: Hello to All> Date: Sun, 30 Sep 2007 14:48:08 -0700> > > Hi Pat! I am 
 > new to this site also. My son has CML and is only 11> years old. It is so 
 > comforting to me to hear of all you folks who> have been living with CML for 
 > years. It encourages me that you have> continued to live full lives in spite 
 > of your CML. I hope my son will> live a long full life too!> > I thank God 
 > every day for those who were on the original trials for> CML. I thank God 
 > for the researchers and doctors who so diligently> are trying to cure this 
 > disease. I thank God every day that I still> have my son, and that there is 
 > hope for people with CML!!> > Please don't get discouraged, or feel 
 > embarrased by your smoking> habit, your depression, or your frustration with 
 > the other huge> conflicts in your life. Sometimes we feel we have had all we 
 > can> take, and then we learn we can take a little more than we thought!!> 
 > Please try to keep a positive attitude! You are doing the best you> can, and 
 > every day is a new beginning. If you have failed to quit> smoking before, 
 > that fact won't make you fail again. You are a> survivor, and you are 
 > stong!! You can beat CML and you can beat> smoking!> > Your side effects 
 > sound awful, and I will pray for you today to find a> doctor that will take 
 > the time to listen to you, and start to heal the> whole you. You need 
 > confidence in your doctors so if he is not working> for you, you have to 
 > find someone who will. You have needs beyond> healing your body, you need to 
 > heal you mind and your heart!! I hope> you are seeing a therapist to help 
 > you with all your challenges. And> please don't forget your spiritual self. 
 > You need the peace and joy> and hope that you can find when you let go, and 
 > let God!> > I have never been a very religious person, but you would thnk I 
 > am> with my advice above!! I have found that I need to believe that> someone 
 > else is in control, and will do what is best for me and my> son. I hate 
 > losing that control, I hate letting go, but I have> learned that I have to! 
 > I didn't cause this cancer, and I can't cure> it, so I have to believe that 
 > it is here for a reason, even if only He> knows why right now.> > Pat, we 
 > are all praying for each other, and we understand that we all> need each 
 > other to get through some tough days. Please don't hesitate> to write back.> 
 > > Hugs to you and your family! Sue in MA> > > On Sep 29, 4:50 am, "[EMAIL 
 > PROTECTED]" <[EMAIL PROTECTED]>> wrote:> > Just wanted to check in with 
 > everyone. I am saddened that there is> > such little communication amongst 
 > the group these past months, but I> > guess I shouldn't be one to complain 
 > because I have not participated> > near enough myself. What is going on? I 
 > know there was some conflict> > sometime back and someone started another 
 > group. Has everyone deserted> > this one and went to it or what? Something 
 > happened to our computer> > and I've lost some things but my hubby has been 
 > working relentlessly> > and has recovered some things.> > Anyway, I still 
 > have not reached my zero mark.I am basically at a> > standstill. I am having 
 > other health problems. I think I've told> > everyone already I am now 
 > battling COPD. My appetite decreased so much> > when I started taking 
 > Gleevec and now it is non-existent. I have to> > force down what little I do 
 > eat. I basically live off of cereal and> > soup and as soon as I take 2 or 3 
 > bites and it hits my stomach, I> > can't even make it to the bathroom. I 
 > have dirrhea constantly. If I> > take my lotomil, then I'm constipated. I 
 > was having so much trouble> > with my stomach, my primary doctor ordered a 
 > cat scan which found> > nothing. I am a smoker and I am constantly quitting 
 > and restarting.> > I've been on and off of the chantix(the quit smoking 
 > pill) and the> > nausea from it was just horrific. None of my doctors can 
 > tell me if> > maybe I shouldn't be taking it with the Gleevec. Not being 
 > able to> > quit and stay quit is causing me severe depression. I know how> > 
 > extremely important it is for me to quit. I'm also going through early> > 
 > menopause which I am told is probably caused by the leukemia and this> > too 
 > has been a terrible experience. I am under so much> > stress...fininacial 
 > problems, a sick husband and a grown son who is> > bipolar just to name a 
 > few. I broke down at my last visit with my cml> > specialist and he wants me 
 > to try the sprycel, wrote me a script which> > I haven't filled yet as my 
 > primary doctor was wa

[CMLHope] Re: Anyone Have Acid Reflux

[Pete pabon]

I have been suffering from this for the last 4 months.I've had a colonoscopy and esophagogastroduodenoscopy. My doctors verdict was Gastrtis. I feel it is the Gleevec. By the way, I just celebrated my 8 yrs of Cml. I just had my latest BMB and still no Phillies. My cml doctor says that I have not shown any signs of the Phillies for over 6 yrs. I was hoping he would use the term cured but I know better. 



 

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[CMLHope] Re: A Great Way To Start The Year!

[Pete pabon]

Great news.You deserve it.



 

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[CMLHope] Re: Nausea returns?

[Pete pabon]

I have been on Gleevec for 5yrs and still experience nausea once in awhile. It comes and goes.



Everyone has beauty but not everyone sees it.

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[CMLHope] Re: (Nausea)

[Pete pabon]

Grennie,mine started every morning then went away and now I feel it every once in awhile



Everyone has beauty but not everyone sees it.

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[CMLHope] Re: (Nausea)

[Pete pabon]

Dave, thanks for the input I was beginning to think I was the only one feeling these changes. 



Everyone has beauty but not everyone sees it.

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[CMLHope] Re: (Nausea)

[Pete pabon]

I usually get it in the morning. Sometimes it goes away right away and other times I feel it all day. I'm beginning to realize that if I eat a lot the day before it's not so bad. I have been waiting for my next appointment with my Onc. to ask him to give me medication for the nausea.Diag 7/99 major cy response 5/00, started gleevec 5/01



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[CMLHope] Re: (Nausea)

[Pete pabon]

I have been on gleevec 5 yrs and all of a sudden am experiencing nausea. Never had problems before



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