from:"Marty Gartenberg"

Re: [CMLHope] Re: surgery behind me

2015-10-04 Thread Marty Gartenberg

Joyce,

As for you saying "I feel like you are all family and hope you will excuse
this off-subject post.  I love you all and you are in my every prayer".

What do you mean? First YOU ARE ONE OF OUR FAMILY! And There is no such
thing as an excuses for an "off-subject post" and there will never be an
off subject post when it comes to health as far as I am concerned and I'm
sure that everyone agrees, and especially when a lot of people are saying
prayers for you.

Joyce I never complain but since we all seem to be family just peer into
what I have gone through. A bone marrow transplant was back in 1989.
Dialysis for the past four years. A kidney transplant about seven months
ago. An operation for my prostate blocked off called a TURP. A stroke. An
aggressive mursa, and then hospitalization and many surgical operations not
to mention a lot of other things, But just look at what I got in return? Do
you know how many greeting  cards and many prayers I received form you
people on this site? for "off subject posts"? Not one!

I am however sorry for what you just went through and what your husband has
been going through, but you still know about all of the prayers that are
being sent to both of you.

You just go on just as I do and no matter what you and him do and enjoy
your life.

Remember what 18's is for.

Marty

On Sun, Oct 4, 2015 at 10:51 AM, Joyce Mesnarich  wrote:

> Jeanie, glad to hear your blood work was good.  I have been off the site
> for awhile.  Just had a mastectomy.  Healing in progress.  No cancer found
> in lymph nodes so no chemo or radiation needed!  God is indeed good!!  I
> know breast cancer is not the subject of this group, but I have been one of
> you since 2009 when my husband was DX with CML.  I feel like you are all
> family and hope you will excuse this off-subject post.  I love you all and
> you are in my every prayer.
>  Joyce in IL
>
>
> On Oct 2, 2015, at 10:51 AM, 'Icandoallttc' via CMLHope wrote:
>
> > My visit to Moffitt was good.  Blood work was mostly normal.   God 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] Three months

2015-09-29 Thread Marty Gartenberg

Hi Mitri,

So you can now see that there are good things that more and more people
with CLM can do, and your son is a living example just as Angie is.
Absolutely wonderful!

On Tue, Sep 29, 2015 at 8:39 PM, Parichart N.  wrote:

> Congratulations!!!
>
> So excited to learn about this. My son was on Gleevec since he was 9, now
> he's 18 - starting his new life in College, blood count are good and all
> clear since he was 10 until now. Our doctor never recommended to decrease
> the dose (4/day) or off. Hope to see lots and lots more people be able to
> live life free of it.
>
> All the best to you, Angie.
> Pari
>
> On Wed, Sep 30, 2558 at 7:21 AM 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] Three months

2015-09-29 Thread Marty Gartenberg

Angie,

So I see that your finally good to go  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] happy Holidays!!

2015-09-18 Thread Marty Gartenberg

Jim,

I am so sorry to hear this. I am wounded every time something like this
happens. If there is anything that I can do for you then please let me know.

18's,

Marty

On Fri, Sep 18, 2015 at 2:53 PM, Nadia Noles  wrote:

> This is from Mr. Noles, the husband of Nadia Noles, a member of CMLHope.
>
>
>
> Nadia passed away yesterday, at 2:45 PM.  Seven days ago she was working
> in her garden, and today she is
>
> gone.  She had CML for seven years, and Gleevec was the wonder drug that
> kept her alive.  All the other
>
> drugs, such as Sprycel, caused her terrible side-effects, but she
> tolerated Gleevec.  However, seven days ago
>
>  she became weak and disoriented, and  I took her to her PC physician, and
> she immediately admitted her;
>
>  but within the hour, after checking her white cells, which stood at
> 116,000, she was that evening transported
>
> to The Cancer Care Unit in Moffitt Cancer Center.  She was then diagnosed
> by her oncologist with now having
>
> Acute Myeloid Leukemia, and we were both told she was terminal with only a
> few weeks to live.  We both
>
> wanted her  to die at home, but it was suggested that she first stabilize
> in Hospice for two days.  However, when
>
>  she arrived  at Hospice she was already in a semi-coma state, and then
> died the following afternoon.  Her passing
>
>  was relatively painless.
>
>
>
> Thank you all for the support you gave her in the past years.  I can tell
> you that she often talked about how
>
> much your support meant to her.  Now life is for the living… so keep the
> faith while you go through your own
>
> struggles.
>
>
>
> Jim Noles
>
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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 4 topics

2015-08-30 Thread Marty Gartenberg

Dear Elizabeth and Nick, and everyone that are reading this.

I was very happy to hear that your 55 years of being married has come to
be. So far I can only claim 45 years, but we are still working on it.

You know what? I have a present for you and everyone else. Now I don't
know if you or anyone else likes Tuna fish (Starkest) in a can but I do,
and whether you have tried just one can then you are entitled to $25 Cash
or a $50 coupon for any of the cans of Tuna fish.

It doesn't require any receipts as long as is in within the past several
years. And here is why... They found some 5oz cans were short of weight,
and the trial judge ruled that anyone that consumed even one can then they
are entitled to the $25 cash or the $50 worth of the caned Tuna fish and
there is no proof required just fill out a form the site below.

If you like you can either take the cash or the $50 worth of Tuna fish. If
you choose the $50 worth of caned Tuna fish then you might consider
donating it to a needy family or a Church or Synagogue or any ware that you
may be able to help someone else.

www.tunalawsuit.com

This is what I just told you about. I filed my claim today on the internet.

18's

Marty

http://www.tunalawsuit.com

On Sun, Aug 30, 2015 at 5:23 PM, NICK WOODS ksnwo...@prodigy.net wrote:

Hello to all our CML Friends in this group. Nick and I quietly celebrated
55 years together Friday. We're thankful for the LMH Oncology Department
Dr. Stein and all the nursing staff who have kept Nick going and worked
with him and us for these 12 years.
We send each of you special greetings and prayers, too. Yes, Jeannie,
it's faith and pills. And people praying for each other.
Today after church there was a blood drive to help replace blood used by a
17year old who is fighting Non-Hodgkin's Lymphoma. I hope lots of people
signed up and donated.

Hope you have a lovely holiday, John and wife. Joyce, hope you find an
Oncologist who listens and cares for you and your CML needs. Greenie, we
haven't had no-see-ums, but boy! have we had chiggers this year!!! Next,
I've got to go out and pull poison ivy from steps and trees. Probably
tomorrow.
As ever Elizabeth Nick

On Sunday, August 30, 2015 5:17 AM, cmlhope@googlegroups.com
cmlhope@googlegroups.com wrote:

cmlhope@googlegroups.com
https://groups.google.com/forum/?utm_source=digestutm_medium=email#!forum/cmlhope/topics
Google
Groups
https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!overview
https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!overview
Topic digest
View all topics
https://groups.google.com/forum/?utm_source=digestutm_medium=email#!forum/cmlhope/topics

- Thanks

https://us-mg6.mail.yahoo.com/neo/launch?.partner=sbc.rand=a61t04hu7osng#group_thread_0
- 2 Updates
- John

https://us-mg6.mail.yahoo.com/neo/launch?.partner=sbc.rand=a61t04hu7osng#group_thread_1
- 3 Updates
- Oct BCR-ABL

https://us-mg6.mail.yahoo.com/neo/launch?.partner=sbc.rand=a61t04hu7osng#group_thread_2
- 1 Update
- August 2015 - Advances in managing and treating lymphedema

https://us-mg6.mail.yahoo.com/neo/launch?.partner=sbc.rand=a61t04hu7osng#group_thread_3
- 1 Update

Thanks
http://groups.google.com/group/cmlhope/t/dd55de2fa043e69f?utm_source=digestutm_medium=email
Suzieq sheila.a.wat...@gmail.com: Aug 29 02:11PM -0700

Joyce: I go to Sitemen Cancer Center at the Barne's Jewish Hospital and
Washington University School of Medicine. My doctor is Dr. Amanda Cashen.
I know she treats many CML patients, not sure about being a CML
specialist. I checked her out when the doctor I had previous to her left
to go back into research and she did her clinicals under my original
doctor
that I started out with at Sitemen, Dr. Hannah Koury. Dr. Koury was the
greatest.but I only had him for about six months when he left to go to
Emory University hospital in Atlanta to set up a Hematology/Oncology Dept.
like Sitemen has. That was back in 2004. After him, I saw Dr.
Vig...now he may be a specialist, because after about my 3rd or 4th
visit with him, he handed me off to another (the one who went back into
research) saying that I was not sick enough, that he only saw those CML
patients who were in trouble or having many problems. Once I got Dr.
Cashen, I've been very happy with her. She is very compassionate and
she'll sit there and talk to me. I also see her nurse practitioner, Holly,
almost as much as her. I love them both and would recommend them to
anyone. There is a Dr. Depersio within the group of
Hematologist/Oncologists that has been listed in the top 100 doctors
I've
heard that those who see him are happy with him. I hope this answers your
questions. I am very happy going to the Cancer Centerthey have an
awesome set up if one needs a BMB done, will give you drugs if you need
them for the BMB. I've never had a problem with the lab

Re: [CMLHope] New results

2015-08-25 Thread Marty Gartenberg

Dear Beth and Joyce,

Sometimes things may not go as planned but sometimes they do go  as
planned. This is what life is all about. I know what the both of you are
going through, and it does take someone that has already been their and
done that, but you still live on to do what you can do.

Every time that I open my eyes I know that in spite of everything that I
have already gone through there is yet another day that I have gone
through.

I try not to complain but that is me, and just to list my bucket list let
me start off with my bone marrow transplant more then 26 years ago. It was
a devastating event but I lived through it because I had the will to do
it.

Another several devastating events were the dialysis I had to go to for
four years, but I still lived through it. Going forward, the kidney
transplant, and then the prostate operation followed by the stroke all with
in the past six months. So what could be next for me? I don't know but what
I do know is whatever may happen to me I will deal with because I have
always had the will to live and mostly the attitude, and that's what I try
passing on to so many people, and in turn you pass it on to so many others
because you are actually  helping everyone else, and it really isn't so
much about me but yourselves.

And to prove a point just look at the post between both of you. And please
don't stop sending posts because you are the life line, and I know that it
really helps no matter what you may being going through.

I truly wish yourself  the best of everything.

18's,

Marty

On Mon, Aug 24, 2015 at 8:37 PM, Joyce Mesnarich joy...@htc.net wrote:

 Dear Beth,
 I am so sorry to hear of your health experiences.  You will be in my
 prayers.  I have always enjoyed reading your posts.  Sorry you do not feel
 like staying in contact and I am sure it is not easy with all the
 compression garments.  I have been diagnosed with breast cancer and will be
 having a total mastectomy in Sept and I am concerned about lymphedema after
 that.  I cannot imagine the pain and discomfort you must be in.  I wish I
 could be of some help, but we are probably miles apart.  Your postings were
 always so spirited and sparkly;  I am sorry to hear that you are losing
 your spirit.  I hope that the second back surgery was at least a success
 and I pray that this latest thorn in the flesh will right itself and
 disappear just like it came.

 My husband, Wayne, has had some good news about his liver enzymes:  they
 seem to be going down.  They are still high but at least seem to be going
 in the right direction.

 God bless and and keep you.
   Joyce in IL



 On Aug 24, 2015, at 11:23 AM, bkbarney via CMLHope wrote:

 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 side
 effects, and especially not the long term ones.  We are confident in his
 doctor and he is watching it closely.  Have you reached undetectable on
 your low dose of tasigna?
  Thanks for your good thoughts.
 Joyce in IL


 On Jul 24, 2015, at 10:36 PM, bkbarney via CMLHope wrote:

 Hi

Re: [CMLHope] Ponatinib

2015-08-15 Thread Marty Gartenberg

Well now.

I am beginning to see some positive progress within the CML community. This
one is doing well because things are getting better because some of you
fine people are finding their way to not being able to detect any more of
those nasty cells.

Others are also doing well because some people have been saying that drug
or any other TKI's have been able to save their lives, and you know just
who you are.

Me? I'm just an old CML dinosaur but I guess that I'm still alive.

You will see, that it will be coming. CML will be a thing of the past and
it will surly effect you.

Just look what is going on, in a short period of time CML had only a short
time to live maybe five years sometimes a little more but now with all of
the advances people are living much longer and still being able to go on
with their lives.  Just be sure to stay away from speeding ✋buses.
Hey I have trough the ringer but I never complain about it because it
doesn't help, it is what it is.

I truly admire all of you people, because I have already been there and
done that. THINGS ARE TRULY CHANGING FOR THE BEST!

Don't forget to post all of your good story's as well as some of your not
so good story's because they often turn around and sometimes other people
are often there to help each other.

18's,

Marty


On Fri, Aug 14, 2015 at 4:47 PM, John Barrons jl...@rogers.com wrote:

 Hi Jeanie My last blood test was on Aug 5. I went for one month with only
 two pills. My platelets and wbc went down even then. So I didn't take the
 pill on the 6th and now I will wait until the 12th and another pill 3weeks
 later. So we will see what happens. Sorry your counts went up. John B

 Sent from my iPad

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Re: [CMLHope] Test Results

2015-08-14 Thread Marty Gartenberg

Hi Suzieq,

First let me congratulate you on you success about being non detectable, a
very good step in the right direction.

I already have been in touch with Skip and we talk to each other  about
every couple of weeks. I have already mentioned about all of you and he is
happy for all of you. He is just very busy with his regimen but I will see
if i can get hold of him and possibly get on here.

18's,

Marty

On Fri, Aug 14, 2015 at 8:27 PM, Suzieq sheila.a.wat...@gmail.com wrote:

 *To my CML Survivors:*

 *Just wanted to let everyone know that my BCR-ABL results came back and I
 am once again none detected...I'm so very happy.  So, who knows why
 the results last Dec. 31st turned up positive after being negative since
 July of 2009.  Might just have been a false positive or something.  I know
 it sure upset me. LOL!!  My doctor settled me down as did my husband.   She
 wants me to continue on with the 100mgs. a day of Gleevec.  I think I
 started that about a year and half ago.  We're hoping it will keep me at
 the none detective.  I just do not feel comfortable with going off the
 Gleevec completely. *

 *Okay,  everyone have a great evening.  And,  if anyone knows how to get a
 hold of Skip,  send him a message and try and find out how he is doing.  *

 *Keep Looking Up,*

 *Suzieq*

 *p.s.  did Novartis extend the patent on Gleevec or is it up.  I was
 thinking it was suppose to be up around the 4th of July.  I know it is
 still very expensive.  I thought surely it would start dropping in price by
 now.*

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Re: [CMLHope] Stopping Gleevec and BMB X4 !

2015-08-10 Thread Marty Gartenberg

Hi Angie,

In my long list of my bucket list I have gone through seventeen bone marrow
gathering expeditions, BMB's or MBA's, to many to count so why not take
your pick?

But is each one of them they hurt but I had a name for them, A.R.P.I.T.A.
(A real pain in the Azz) and so it was in the early days of the
A.R.P.I.T.A. But I got through it. By the way there was nothing about
having any pain killers only the four syringes of 2% lidocaine, which did
nothing. At least they only lasted for several seconds.

I think that the longest amount of these needles were probably around 30 or
more. And that is still a close friend of mine Skip. Oh by the way he has
gone through I think about 30 years or more of CML without even taking and
TKI's or any bone marrow transplants. I believe we are looking for
a Guiness  world book of  records.

18's

Marty

On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS esd...@rogers.com wrote:

 Thanks, Marty. I am having no great emotional upheaval over quitting
 Gleevec. Whatever will be, will be, and everything is a learning
 experience. It just feels strange after 14+ years.

 In other news, Monday a new platelet dr. decided to do a BMB.
 You won't believe this: It took him FOUR tries to get a viable sample.
 Never had this happen before. Four crunching entries.
 Sort of like having four BMB's at the same time. Afterwards I was almost
 in a state of shock and could not stand, nauseous, very stressed. (In
 Canada we do not get sedation or morphine for this procedure.) It took me
 90 minutes to de-stress and had to drive myself home because he had not
 warned me that he intended to do this and to bring a driver along. There's
 one doctor who will NOT be doing another BMB on me!! I think he needs a few
 more lessons in how to do it.

 Anyway, I am finestill low platelets. Life goes on.
 Angie


 --
 *From:* Marty Gartenberg wa2...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Wednesday, June 17, 2015 7:29 AM
 *Subject:* Re: [CMLHope] Stopping Gleevec

 Hi Angie,

 You are not thee only one that has stopped your TKI and felt that way.
 sometimes something that we take as far as any TKI's ends up being a crutch
 for us and we always seem to worry if this or that will come back to haunt
 us. It is a normal human response and we worry about it.

 Angie, since your really feeling better without the Gleevec then you
 should learn to live your life in the best way that you can.

 I have seen this many times before. A man that both Zavie and I knew was
 on Alpha Interferon and suffered immensely from it's horrible side effects.
 He suffered for many years and when he was finally PCRU everyone told him
 to stop using it anymore but he still continued still suffering because it
 had become a crutch for him. He had the same feelings as you now have and
 after a lot of coaching from everyone he finally stopped it.

 He has been off of it for many years and no reoccurrence of CML ever came
 back to him. His system finally burned out his CML.

 Remember that everything in life has a double edged soared. If you do
 something will it come back to haunt you or if you don't do something will
 it come back to haunt you??

 I just can't live my life that way, and if something does come back then I
 will deal with it.
 Remember me telling everyone that Leukemia is both a disease of not only
 the body but it also poisons the mind.

 Angie, why not start writing a diary and put everything in there that you
 have gone through the day? I do it and it lets me reflect about what I
 could have done better or worse during the day. I call it my frustrations
 and how to deal with them, and it really works for me as I am sure it will
 also work for you or anyone else. By the way I see that Giora sent you his
 response. read it if you haven't as yet.

 Here is something called expect the best Please read it and it will also
 help you with yourself.

 One last thing. I am not a doctor but have gone through a lot of things in
 my life health wise as you already know. Have you ever wondered why I am
 still alive? I did at one time but maybe it is because I try helping others
 as a promise that I once made to GOD and also received help myself from
 others. It is a two way street, or I am the luckiest son of a bitch on this
 planet ???
 18's,

 Marty


 *EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
 CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
 YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
 (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.*
 *WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
 MIND. LEARN TO EXPECT AND NOT 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 MOVES INTO THE AREA OF POSSIBILITY.*
 *EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY

Re: [CMLHope] Stopping Gleevec and BMB X4 !

2015-08-10 Thread Marty Gartenberg

Dear Angie, and everyone else for that matter.

Please don't ever be disappointed in whatever your problems may be. I have
said this time and time again, and you know what? Just look at what
happened to me.

Now I don't profess to be a man of 9 lives but only to be a human being
that has been through a great deal but I just take everything in stride one
day at a time and have been doing this until now for the past 71 years.

 And I guess that I must know what I am talking about, or hopefully I do?
Of course not since I was a child, but the was the time for having fun and
growing up, and to see what everyone around me was teaching me.

You know what, things haven't really changed that much because life is a
learning experience

I have seen many things in my life, but there is and has been something in
my life as of age 45 years old/young? And that is I just know that there
WILL be a cure for Leukemia!!! You just have to sit down and keep this in
your minds.

I would like you to see something that tugs at me heart strings and
basically has little to do with Leukemia but has a lot of things to do with
two events that I had to do through in my life, and after these I sill am
living proof that so far I have survived. And by the way so far. so have
you.

This video has brought some tears as well as some joy to myself. It just
shows what one human can do for each other, and then for good luck add in a
dog. Yes GOD has a way of sorting in a dog, if you so should spell dog
backwards it comes up with GOD. I always wondered about that.

*www.youtube.com/watch?v=mz2kDH0MCn4
http://www.youtube.com/watch?v=mz2kDH0MCn4*

18's,

Marty




On Wed, Jun 17, 2015 at 11:48 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Not every one gets to pcr on tkis.  I never did on gleevec.   It quit on
 me instead of me quitting.
 I finally reached pcr on sprycel.   If you do quit keep a close check on
 your counts.
 Remember there are more tkis you can take if you have problems on down the
 line.
 I am now on the newest one out.
 Live each day for that day and enjoy it to its fullest. I have been taking
 tkis for 11 years as of last January and I'm still here.


 Prayers  Blessings Jeanie 18,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 17, 2015, at 8:35 AM, ANGELYN ESDERS esd...@rogers.com wrote:

 Thanks, Marty. I am having no great emotional upheaval over quitting
 Gleevec. Whatever will be, will be, and everything is a learning
 experience. It just feels strange after 14+ years.

 In other news, Monday a new platelet dr. decided to do a BMB.
 You won't believe this: It took him FOUR tries to get a viable sample.
 Never had this happen before. Four crunching entries.
 Sort of like having four BMB's at the same time. Afterwards I was almost
 in a state of shock and could not stand, nauseous, very stressed. (In
 Canada we do not get sedation or morphine for this procedure.) It took me
 90 minutes to de-stress and had to drive myself home because he had not
 warned me that he intended to do this and to bring a driver along. There's
 one doctor who will NOT be doing another BMB on me!! I think he needs a few
 more lessons in how to do it.

 Anyway, I am finestill low platelets. Life goes on.
 Angie


 --
 *From:* Marty Gartenberg wa2...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Wednesday, June 17, 2015 7:29 AM
 *Subject:* Re: [CMLHope] Stopping Gleevec

 Hi Angie,

 You are not thee only one that has stopped your TKI and felt that way.
 sometimes something that we take as far as any TKI's ends up being a crutch
 for us and we always seem to worry if this or that will come back to haunt
 us. It is a normal human response and we worry about it.

 Angie, since your really feeling better without the Gleevec then you
 should learn to live your life in the best way that you can.

 I have seen this many times before. A man that both Zavie and I knew was
 on Alpha Interferon and suffered immensely from it's horrible side effects.
 He suffered for many years and when he was finally PCRU everyone told him
 to stop using it anymore but he still continued still suffering because it
 had become a crutch for him. He had the same feelings as you now have and
 after a lot of coaching from everyone he finally stopped it.

 He has been off of it for many years and no reoccurrence of CML ever came
 back to him. His system finally burned out his CML.

 Remember that everything in life has a double edged soared. If you do
 something will it come back to haunt you or if you don't do something will
 it come back to haunt you??

 I just can't live my life that way, and if something does come back then I
 will deal with it.
 Remember me telling everyone that Leukemia is both a disease of not only
 the body but it also poisons the mind.

 Angie, why not start writing a diary and put

Re: [CMLHope] Allopurinol ?

2015-07-30 Thread Marty Gartenberg

Jeanie,


I take it everyday. I used  to get these horrible gout attacks. Besides
when some usually has a kidney transplant it really helps.

There are two doses one if for 100 mg the other is 300 mg. At the beginning
of a bone marrow transplant they are usually put on to 300 mg. However it
then depends what the doctor recommends.

You know what? I am on so much medicine it feels like I am eating MM's
But I still live on!

18's

Marty

On Thu, Jul 30, 2015 at 3:58 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Does anyone still take allopurinol?  Thanks

 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] Marty what dosage if cardizem do you take

2015-07-30 Thread Marty Gartenberg

Hi greenie,

You better believe it. Pretty good blood pressure. 

18's

Marty

On Thu, Jul 30, 2015 at 3:31 PM, Myvety2k via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi Jeanie,  the last 2 time my blood pressure was 124/60. The girl said
 that's O. K. was she right.

 greenie

 In a message dated 7/29/2015 3:56:11 P.M. Eastern Daylight Time,
 cmlhope@googlegroups.com writes:

 Thanks Marty
 For some reason my blood pressure was lower this morning. 150/89 and he
 thought the dose was too high.  He will adjust it.  My heart pounds right
 under my right rib. This is the same place I have pain.   Thanks again ❤️❤
 ️

 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 Jul 29, 2015, at 2:23 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hopefully it will work. How high is your blood pressure? What I do think
 is that it will work but it may be larger dose, but you may have to adjust
 the dose, just trail and error.

 Also exactly where is that pounded sensation on your right side? If it
 has anything to do with your high blood pressure then it should work, but
 remember about the dose.

 18's

 Marty


 On Wed, Jul 29, 2015 at 10:40 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hi Marty.
 The doctor gave me a lower dose of cardizem so we will see how it works
 out.  Don't think it's extended release.
 I have a pounded heart sensation in my right side that keeps me awake so
 maybe this will help.
 Thanks for your quick help.  ❤️❤️

 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 Jul 28, 2015, at 6:02 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:
 
  Hi Marty.
  Going to PCD tomorrow and am going to ask for cardizem for high blood
 pressure.   I was wondering what dosage you take.
  Thanks a lot.
 
  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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[CMLHope] Something I would like you to read

2015-07-30 Thread Marty Gartenberg

I am in the process of writing a book. It is on going book that is actually
my autobiography. It describes in detail what I have gone through. Part of
my book describes some of the people who have dealt with Leukemia and bone
marrow transplants.

There are more then twenty years of the stories in this book. I will never
publish it because I usually try to help others with Leukemia

Here is a small part of it.

 I became involved with a web site called Caringbridge about a year ago.
This is a site where people that are ill, usually Leukemia, but other life
threatening illnesses as well can post their experiences of what they are
going through by having cancer. People visit these sites and give support,
encouragement and prayers to them. This is where I first met G. D. She is a
woman in her early thirties and has a sister by the name of Mary. Mary used
to update the Caringbridge site as Gloria went through the transplant
ordeal. It was a very difficult time for G, Mary and their mother Nancy, as
well as all of their family. It is a very religious, pious and close-knit
family, and there was so many on the Internet site that would leave their
support and prayers.



I truly believe that if G hadn't felt that everyone wasn't praying for her
to get through this terrible time she wouldn't have made it. There is a
very special connection with all of her family and GOD that through her
belief it made it something so strong that it was like GOD came down and
kissed her.



It was also a time for her to test her beliefs, and I must say that she
beat this horrible disease for the shear beliefs that she and her family
all have. They are all very amazing people that I truly admire.



I would always try to encourage her by sending her little poems and things
that I went through. I would try to let her know that those very terrible
mouth sores that probably were the worst part of her ordeal would subside
as soon as her white blood count would come up.



Sometimes when someone that had already gone through it tells what to
expect before it actually happens then the patient is more prepared, and
knows what to expect. It is a shame that she wasn't told about some of the
things she would be going through beforehand.



I know just how much G had to endure and to put it bluntly she really
suffered, both in mind and body. Sometimes she wouldn't post anything
because she was too sick to let anyone know. Her sister Mary would usually
do all of the posts on the Caringbridge site, and when she didn't we all
really started to worry.



I had spoken with Mary most of the time, but with also their mother, Nancy.
There were so many concerns, and whenever I would be asked a question I
would always answer any of them as honestly as I could.


Anyway, This story go on but the one thing that I want to bring out is the
part about having the mind controlling the body and as well as the opposite.


18's


Marty

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Re: [CMLHope] Marty what dosage if cardizem do you take

2015-07-28 Thread Marty Gartenberg

Hi Jeanie.

I have been taking Cardizem also known as Dilizem Hydrochloide  for my
blood pressure ever since during my Kidney transplant. It is really helping
me.

I am taking 240 mg Extended release capsule. I usually take one at about
1pm every day. let me know what happens

Good luck

18's

Marty



On Tue, Jul 28, 2015 at 6:02 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi Marty.
 Going to PCD tomorrow and am going to ask for cardizem for high blood
 pressure.   I was wondering what dosage you take.
 Thanks a lot.

 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] Re: 12 years old boy with CML

2015-07-26 Thread Marty Gartenberg

He will heal us, oh God, and we need to heal up and save us, and we will be
saved, one we praise is you. To bring complete healing for all our
diseases, Ho Chi Minh Mausoleum of God, you are loyal to us merciful King.
God bless you, Sir, cure the patients of Israel

When I mean cure the patients of Israel I mean cure every person that
is afflicted with any disease through the world.

As you must know I have been through some difficult time in the last
several months and even more in the last 26 years ever since my bone marrow
transplant but I still refuse to complain because I find that it does't
help me. I have a much better way of dealing with things, which I have been
doing for a long time. Trying to help people including my self as well as
others.

Mt Kidney transplant, my prostate operation, and my stroke, but I seem to
get through these.
Right after my stroke, at first I wasn't able to speak to well but as time
went in only a couple weeks
I got most of my speech back.

A funny happened within a day or so I was able to get at least five of my
languages back with full understanding I was even able to get the speech
back but not my English until a month ago. Still working on that but almost
completely

When I was a young child my parents were from Europe and they spoke several
languages
So we learned from them.

18's and L'chaim

Marty

On Sun, Jul 26, 2015 at 11:56 AM, sherri swanson
swanson.sherri...@gmail.com wrote:

Hi Marty,

As you can guess, it is Sunday.
You are correct when you say that Gleevec is a terrible taste but I don't
have to much of a choice. I did stop it for awhile under my doctors advice
and my numbers went threw the roof so he put me right back on the
medication. When he first put me on the Gleevec, it took me 2.5 years just
to get my numbers in the somewhat normal range. My CML is very stubborn.

Thanks for the tip on Biotene. I have tried that and now I'm something
else as that didn't work. Like I said above stubborn. Everything I have is
that way. They like me for some reason and don't want to leave me. LOL !
 The new stuff I take is called Xylimelts and it has a mild mint flavor
that I love and they are all natural. They help increase saliva which is
something I need as I tend to get blacked salivary glands. ANd boy is that
ever a painful experience.

I must say your Cyslosporine description does not want to make me run out
and try it any time soon. LOL I'm telling you, these drugs we take,
something they are almost as bad as the disease we have.

Thank you for Sabbath wish and the get well wish. I have something for you
as well.

לרפא אותנו, הו אלוהים, ואנחנו צריכים להירפא; להציל אותנו, ואנחנו יישמרו, לאחד
אנו משבחים הוא אתה. להביא ריפוי מלא לכל המחלות שלנו, להו אלוהים, אתה נאמן
לנו ומרפא רחום ומלך. ברוך אתה, אדוני, מרפא את החולים של ישראל.
L'chaim

On Thu, Jul 23, 2015 at 1:17 PM, 'Icandoallttc' via CMLHope
cmlhope@googlegroups.com wrote:

Yes me too. So sorry. My husband had diabetes and suffered with mouth
sores. I hAd really bad sores while on Gleevec. My sores were on my lower
parts And were like boils that came in sets of three. I found you had to
take your Gleevec with really mild foods. Have you tried taking it with
milkshakes? Or ice cream?
Gleevec threw every thing it could at me and I fought through it for 5
years. Prayers to you all.

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 Jul 23, 2015, at 1:34 PM, Marty Gartenberg wa2...@gmail.com wrote:

Hi Sherri,

I feel so sorry for you to have to tolerate such a terrible taste in your
mouth, and what is even worse are those mouth sores. It is like having a
never ending battle.

Maybe I can help you with something called Biotene/
www.biotene.com/products/mouthwash

Even though is it basically for dry mouth it usually helped with some of
the mouth sores. Hopefully it may also help you. You could try a small size
just to see if it works.

So what did Cyclosporine taste like? It tasted like a septic sewer only
coated with some sort of a rotten oily moldy aftertaste. And that was in
the liquid form of it. However in the capsule it was so large (there were
six of them three time a day) that it made me vomit all of the time. And by
the way it was always with severe mouth sores.

So Sherri, at the next opportunity which will be on the Sabbath
(tomorrow) I would also like to wish you, aHi Sherri,
I feel so sorry for you to have to tolerate such a terrible taste in your
mouth, and what is even worse are those mouth sores. It is like having a
never ending battle.

Maybe I can help you with something called Biotene/
www.biotene.com/products/mouthwash

Even though is it basically for dry mouth it usually helped with some of
the mouth sores. Hopefully it may also help you. You could try a small size

Re: [CMLHope] Skip

2015-07-24 Thread Marty Gartenberg

Hi Suzieq,

I also haven't heard from Skip. I tried contacting  him trough skype but
nothing yet.

I will keep tiring.

18's

Marty

On Fri, Jul 24, 2015 at 2:17 PM, Suzieq sheila.a.wat...@gmail.com wrote:

 Was just wondering if anyone has heard from Skip in a while?  I know I
 haven't been very faithful here lately and may have missed any reports
 about him or posts from him.  The reason I am asking,  I've met a woman who
 is a 20 or 22 year survivor with CML and apparently none of the TKI's
 worked for her.  I was telling her about Skip and she asked me what the
 doctor's treated him with and I had forgotten.

 I go for my next 6 month's check up next Wednesday..here's hoping 
 praying for good news

 God Bless,

 Suzieq

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Re: [CMLHope] Re: 12 years old boy with CML

2015-07-23 Thread Marty Gartenberg

Hi Sherri,

I feel so sorry for you to have to tolerate such a terrible taste in your
mouth, and what is even worse are those mouth sores. It is like having a
never ending battle.

Maybe I can help you with something called Biotene/
www.biotene.com/products/mouthwash

Even though is it basically for dry mouth it usually helped with some of
the mouth sores. Hopefully it may also help you. You could try a small size
just to see if it works.

So what did Cyclosporine taste like? It tasted like a septic sewer only
coated with some sort of a rotten oily moldy aftertaste. And that was in
the liquid form of it. However in the capsule it was so large (there were
six of them three time a day) that it made me vomit all of the time. And by
the way it was always with severe mouth sores.

So Sherri, at the next opportunity which will be on the Sabbath (tomorrow)
I would also like to wish you, aHi Sherri,
I feel so sorry for you to have to tolerate such a terrible taste in your
mouth, and what is even worse are those mouth sores. It is like having a
never ending battle.

Maybe I can help you with something called Biotene/
www.biotene.com/products/mouthwash

Even though is it basically for dry mouth it usually helped with some of
the mouth sores. Hopefully it may also help you. You could try a small size
just to see if it works.

So what did Cyclosporine taste like? It tasted like a septic sewer only
coated with some sort of a rotten oily moldy aftertaste. And that was in
the liquid form of it. However in the capsule it was so large (there were
six of them three time a day) that it made me vomit all of the time. And by
the way it was always with severe mouth sores.

So Sherri, at the next opportunity which will be on the Sabbath (tomorrow)
I would also like to wish you, a continued Refuah Shleimal, and L'chaim

And, as always 18's

Marty








Hi Marty,

I Hope this message fines you well. Sorry to be so late in responding to
you, but I do not use the computer on the Sabbath and I haven't been
feeling well.

So to answer your question, Gleevec has a very bitter astringent taste, and
when you swallow it, the liquid burns all the way down. I would imagine it
would be like drinking Drano only less caustic. No matter what you I do I
can not get rid of the taste. I've brushed my teeth, used mouthwash and
that tasted is still there for hours. On top of that, because I'm taking it
in a liquid, I have mouth sores that never heal and each time I take my
medication, I reopen the sores. It's also hard on the enamel of my teeth or
at least that is what my dentist tells me. I would much rather swallow the
pill but due to my paralyzed stomach, I can no longer do that.

So what did Cyclosporine taste like? I can't image that it was very
tasteful.

L'chaim

On Thu, Jul 23, 2015 at 3:25 AM, sherri swanson swanson.sherri...@gmail.com
 wrote:

 Hi Marty,

 I Hope this message fines you well. Sorry to be so late in responding to
 you, but I do not use the computer on the Sabbath and I haven't been
 feeling well.

 So to answer your question, Gleevec has a very bitter astringent taste,
 and when you swallow it, the liquid burns all the way down. I would imagine
 it would be like drinking Drano only less caustic. No matter what you I do
 I can not get rid of the taste. I've brushed my teeth, used mouthwash and
 that tasted is still there for hours. On top of that, because I'm taking it
 in a liquid, I have mouth sores that never heal and each time I take my
 medication, I reopen the sores. It's also hard on the enamel of my teeth or
 at least that is what my dentist tells me. I would much rather swallow the
 pill but due to my paralyzed stomach, I can no longer do that.

 So what did Cyclosporine taste like? I can't image that it was very
 tasteful.

 L'chaim

 On Fri, Jul 17, 2015 at 2:34 PM, Marty Gartenberg wa2...@gmail.com
 wrote:

 Hi Sherri,

 I am just curious I have tasted some awful things in my life, including
 liquid Cyclosporine with was the absolutely worth thing I have ever tasted
 in my life, but since i have never been on Gleevec can you tell me what
 does it taste?

 On Fri, Jul 17, 2015 at 2:32 PM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 No problem. It is strange to tell someone that you don't eat solid food
 and still take Gleevec. Or whenever I say that my stomach is paralyzed I
 get the funniest looks.  But I just explain what kind of illness I
 have and people are so surprised. But I will say one thing, that Gleevec is
 just awful tasting. But I've been doing for so long now that I've grown
 accustom to the taste. Now that is sad. 

 Hope everyone has a great weekend. Try and stay cool. It is going to be
 in the 90's here in the Chicago area and very humid too.

 L'chaim

 Sherri

 On Fri, Jul 17, 2015 at 12:33 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hi Sherri and all.
 I guess we have to realize that we are so unique and different.  We
 have to do what we have to do

Re: [CMLHope] CBC results 7/17

2015-07-18 Thread Marty Gartenberg

Hi Richard,

since your white counts reflect any ware from 12 to around 10, I may not be
understanding  your meaning of a low white count is. That may be in the
metric system but I am not sure,

I have a white count of
RGB4.20 - 6.00 m/uL  6.00 n/ul which is considered normal. Mine is usually
low

18,s

Marty. 3.43


On Sat, Jul 18, 2015 at 7:50 AM, Myvety2k via CMLHope 
cmlhope@googlegroups.com 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,
 rbhuffm...@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] Re: 12 years old boy with CML

2015-07-17 Thread Marty Gartenberg

Hi Sherri,

I am just curious I have tasted some awful things in my life, including
liquid Cyclosporine with was the absolutely worth thing I have ever tasted
in my life, but since i have never been on Gleevec can you tell me what
does it taste?

On Fri, Jul 17, 2015 at 2:32 PM, sherri swanson swanson.sherri...@gmail.com
 wrote:

 No problem. It is strange to tell someone that you don't eat solid food
 and still take Gleevec. Or whenever I say that my stomach is paralyzed I
 get the funniest looks.  But I just explain what kind of illness I have
 and people are so surprised. But I will say one thing, that Gleevec is just
 awful tasting. But I've been doing for so long now that I've grown accustom
 to the taste. Now that is sad. 

 Hope everyone has a great weekend. Try and stay cool. It is going to be in
 the 90's here in the Chicago area and very humid too.

 L'chaim

 Sherri

 On Fri, Jul 17, 2015 at 12:33 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hi Sherri and all.
 I guess we have to realize that we are so unique and different.  We have
 to do what we have to do to survive.
 When I first went on Gleevec it wasn't working. So we crush the pills and
 everything hoping it would work. I didn't know at the time  that we were
 not supposed to crush the pills.
 I do know that some people can't swallow pills.  I'm so sorry to hear
 about your stomach problems.  I hope you get better.
 Thanks so much for your story.

 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 Jul 16, 2015, at 2:43 PM, sherri swanson swanson.sherri...@gmail.com
 wrote:

 Hi everyone,

 While it is true we are not to take PPI's and we are to take our Gleevec
 with a meal, I happen to be the exception to that rule. I've been on
 Gleevec since 2002. I have not taken my Gleevec with any solid food in 6
 years. I have a paralyzed stomach and I can no longer digest solid food. SO
 I must have only liquids. The only way I can take my Gleevec is dissolved
 in 3 ounces of apple juice. NOW, I do not recommend that everyone go out
 and do this as it is very hoard to tolerate and I am very sick when I take
 my Gleevec this way. But it is the only way I can get it in and it was
 doctor recommended. And, let me tell you, it tastes awful!

 As for the PPI's, I've been on those for as long as I've been on the
 Gleevec. However, do to my kidney disease, my nephrologist has taken me off
 of the PPI and my stomach is very angry with me. More so than before.

 Now, I do not recommend that you go out an take the PPI's and Gleevec at
 the same time. I'm a special case and I was able to tolerate. Jeanie is
 correct when she says you should follow the instructions from the packet.
 I'm just relaying my experience.

 L'chaim

 Sherri

 On Thu, Jul 16, 2015 at 1:02 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hello all.
 When I was in the hospital in 2009 after Gleevec failed I kept asking my
 onc at the time to start me on Sprycel.  He wouldn't at first but finally a
 nurse convinced him to do it.  He was giving me 600 mgs Gleevec plus other
 drugs.  My platelets and WBC were very high and not coming down even after
 blood cleansing.
 He came in my room and gave me a prescription for Sprycel.  The hospital
 I was in couldn't get the Sprycel so my son had it filled at Walgreens.  I
 was reading the Sprycel information and it said no proton pump inhibitors.
 I found out that due to my side pain they were giving me a proton pump
 inhibitor twice a day. No wonder the meds weren't working!
 I refused to take the inhibitor again.
 The Sprycel put me into remission in just a few months.  So be your own
 doctor at times and read the info on your drugs.

 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 Jul 16, 2015, at 6:39 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hi we are not supposed to have proton pumps on tkis.  I'm so sorry he is
 sick.   He is supposed to take his gleevec with a large meal. I took mine
 with my breakfast. Read your gleevec info and see the info there.  Has he
 added any new med?
 Keep him on mild food and see a dietician if possible.  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 Jul 15, 2015, at 2:47 PM, kevin.l.willi...@gmail.com 
 kevin.l.willi...@gmail.com wrote:

 I would ask your Oncologist about alternative drugs to Gleevec.

 On Wednesday, July 15, 2015 at 1:00:14 AM UTC-7, Choi wrote:

 Hi, this is Choi.

 My friend's 12 years old son have CML. He got diagnosed when he

Re: [CMLHope] 12 years old boy with CML

2015-07-15 Thread Marty Gartenberg

Hi Choi,

Something you may be interesting in seeing.

Copy this link
http://www.medicinenet.com/gastritis/patient-comments-313.htm

It discuses a lot of the problem of different people with gastritis.
I hope it help you.

!8's, it is a symbol  for life. I always use it.

Marty



On Wed, Jul 15, 2015 at 4:00 AM, Choi saehyun...@naver.com wrote:

 Hi, this is Choi.

 My friend's 12 years old son have CML. He got diagnosed when he was 7
 years old and on 200mg Gleevec for 5 years.

 Recently he has been suffering from severe nausea and stomach pain (sign
 of gastritis) for 2 weeks.

 His Doctor gave treatment for gastritis; proton pump inhibitor, PPI. but
 it doesn't work.

 Do you have any advice for relief from withdrawls symptoms?

 Choi.

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Re: [CMLHope] Platelets

2015-07-03 Thread Marty Gartenberg

i am at home getting rehabilitation.

18's

Marty

On Fri, Jul 3, 2015 at 3:22 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi Marty.
 Are you in the hospital?

 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 Jul 3, 2015, at 3:19 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi, everyone,

 I did have a stroke on Friday the 26 i am slowly getting better.
 just affected my speech but still working through it.

 18's

 Marty

 On Thu, Jul 2, 2015 at 9:54 PM, 'Marcie Goodman' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Marty, when did that happen?  I hope you are feeling well and I'll be
 saying prayers for you.  Please take good care. Hugs to you.

 18s

 Marcie

 Sent from my iPad

 On Jul 2, 2015, at 9:47 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi. Susan

 unfortunately i had a stroke. getting better.

 18's

 Marty













 On Mon, Jun 29, 2015 at 2:18 PM, 'Susan Zimmerman' via CMLHope 
 cmlhope@googlegroups.com wrote:

 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
 https://overview.mail.yahoo.com/mobile/?.src=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 [image: Fish] [image: Fish]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] Platelets

2015-07-03 Thread Marty Gartenberg

Hi, everyone,

I did have a stroke on Friday the 26 i am slowly getting better.
just affected my speech but still working through it.

18's

Marty

On Thu, Jul 2, 2015 at 9:54 PM, 'Marcie Goodman' via CMLHope 
cmlhope@googlegroups.com wrote:

 Marty, when did that happen?  I hope you are feeling well and I'll be
 saying prayers for you.  Please take good care. Hugs to you.

 18s

 Marcie

 Sent from my iPad

 On Jul 2, 2015, at 9:47 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi. Susan

 unfortunately i had a stroke. getting better.

 18's

 Marty













 On Mon, Jun 29, 2015 at 2:18 PM, 'Susan Zimmerman' via CMLHope 
 cmlhope@googlegroups.com wrote:

 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
 https://overview.mail.yahoo.com/mobile/?.src=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 [image: Fish] [image: Fish]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] Platelets

2015-07-02 Thread Marty Gartenberg

Hi. Susan

unfortunately i had a stroke. getting better.

18's

Marty













On Mon, Jun 29, 2015 at 2:18 PM, 'Susan Zimmerman' via CMLHope 
cmlhope@googlegroups.com wrote:

 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
 https://overview.mail.yahoo.com/mobile/?.src=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 [image: Fish] [image: Fish]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

 --
 --
 [CMLHope]
 A support group of 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
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 To unsubscribe from this group and stop receiving emails from it, send an
 email to cmlhope+unsubscr...@googlegroups.com.
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 You received this message because you are subscribed to the Google Groups
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 -

 You received

Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.

2015-06-25 Thread Marty Gartenberg

Thank you Susan,

18's,

Marty

On Thu, Jun 25, 2015 at 12:26 PM, 'Susan Zimmerman' via CMLHope 
cmlhope@googlegroups.com wrote:

 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
  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

Re: [CMLHope] Jeans Moffitt visit

2015-06-24 Thread Marty Gartenberg

Love you Beth for helping out Joyce. So you see that is exactly what this
is all about, helping others and yourself.

Love your 18's

So i send them right back to you

18's,

Marty [?]

On Wed, Jun 24, 2015 at 11:36 AM, bkbarney via CMLHope 
cmlhope@googlegroups.com wrote:

 Dear Joyce,

  You are so inspiring! I  hope you continue to have no side effects over
 timeyou are so strong with such a good attitude, that I trust you will
 get through this, as you have survived other events over the years...I too
 will pray for no chemo needed...after you get through the surgery...like
 Marty, then you can put it behind you..while you are going through all
 of thisjust remember how cared for, loved, and appreciated you are
 ...here..with us.

  have a great day!! and feel good!!!


 Love, 18's, and hugs, Beth


 -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Mon, Jun 22, 2015 1:37 pm
 Subject: Re: [CMLHope] Jeans Moffitt visit

  Beth, you know what Zavie would have to say don't you?

  YIPPIE YAHOOY...

  18,s

  Marty

  On Mon, Jun 22, 2015 at 10:47 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

  That is really great!! [image: ❤]️ [image: ❤]️

 Prayers  Blessings Jeanie 18,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 22, 2015, at 2:06 AM, Joyce Mesnarich  joy...@htc.net wrote:

   Jeanie,
 So far I have had no side effects from the anti-hormone pills to shrink
 the tumors.  I don't know if they may come on after I have taken the meds
 longer or not.  I am to take them for 3 months.  I am praying they do their
 job and then it will be on to the surgery part of the treatment, followed
 by radiation.  Hopefully not chemo.  Thank you for your prayers and
 concern.  This group is so uplifting.
 Joyce in IL



  On Jun 21, 2015, at 4:36 PM, 'Icandoallttc' via CMLHope wrote:

   Looks like you've had it all. So sorry for the diagnosis.  I know you
 are strong and we are here for you always. Are you having bad side effects
 from the pills to shrink the tumors?

 Prayers  Blessings Jeanie 18,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 21, 2015, at 12:13 AM, Joyce Mesnarich  joy...@htc.net wrote:

   Jeanie,
 I did not have a ct scan.  At least not yet.  I have had mammograms,
 ultra sounds and MRIs.  I had 2 different biopsies, both confirming breast
 cancer.  I am now taking a pill to hopefully shrink the tumors before
 surgery. Thanks for your prayers and concern.
  Joyce in IL


  On Jun 20, 2015, at 9:13 AM, 'Icandoallttc' via CMLHope wrote:

   Oh no Joyce.  So sorry about the breast cancer!!
  Did they do a ct scan on your breast?
  Good luck on all the test.  My prayers are with you.
  Maybe you could go on the ponatinib if the other tki doesn't work.
  I have had complete positive response in 6 months.
  Have faith and courage. I am 77.   [image: ❤]️ [image: ❤]️

 Prayers  Blessings Jeanie 18,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 11:54 PM, Joyce Mesnarich  joy...@htc.net wrote:

   Jeanie,
 So happy that your new TKI is working.  On July 9 my hubby and I will go
 to see Dr Talpaz in MI to see if his new TKI, bosulif, is working.  In
 April it was not doing anything and they doubled his dose to 100 mg.  We
 are hoping that this does the trick.
  Best of luck on your upcoming ct scan.  Seems like it is always
 something, doesn't it?
  I was recently dx with breast cancer, so I am going through a bunch of
 tests, biopsies, etc. to see what my next step is.  I am 75, so this is not
 as big a deal to me as if I was younger.  But I will do whatever is
 necessary to fight this.
  Fight on, warriors.
 Joyce in IL


  On Jun 19, 2015, at 12:43 PM, 'Icandoallttc' via CMLHope wrote:

   Hello to everyone and thanks for the uplifting.
  This tki is really working.
  Praise The Lord!!!

  Going to have a ct scan soon of my thorax to make sure everything is
 good.

  Happy Friday!!!

 Prayers  Blessings Jeanie 18,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 18, 2015, at 4:54 PM, bkbarney via CMLHope 
 cmlhope@googlegroups.com wrote:

   Jeannie..what FABULOUS NEWS :)You rock, I know this has been a
 very very difficult journey on ponatinibit's so nice to hear that it is
 doing it's job, and that you are adjusting to the medication...I am just
 s happy for you because I know it's been a really challenging time.
 your resiliency and staying your course with a positive outcome

Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.

2015-06-24 Thread Marty Gartenberg

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
 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
 https://www.biblegateway.com/passage/?search=Psalm+91#fen-NIV-15397a]
 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

Re: [CMLHope] Jeans Moffitt visit

2015-06-22 Thread Marty Gartenberg

Hi Joyce,

I see that your a night owl by getting up so early in the morning. This
tells me something. You have a lot on your mind but for good reason. When
something is running through my mind I also have difficulties sleeping and
will get up early in the morning. Sometimes I just lay in bed and my mind
seems to work overtime, and most of this time I just think about things.
Some good but also some bad.

Joyce this is just human behavior and I have tried to learn how to control
it. As I have mentioned many times already this disease called CML is both
a disease of not only the body but the mind itself, and I found a way to
try and deal with it. Remember that I just went through a lot having the
kidney transplant as well as that nasty operation to my prostate with many
problems as well as many hospitalizations.

I am no different then you or anybody else and I do have my times that I
become frightened about what is to come up later. However I try to always
be upbeat and try to think things out, and usually do. It took me many
years to be able to know how to deal with things and I would always
remember something that I have passed onto this group as well as a few more
CML sites.

Even though you and others may have already seen it I would like to send it
to you once again. You may want to print it out and whenever you should
have any doubts just pick it up and read it. It always helps me and I think
that it will also help you as well.

By the way you know that I am praying for you. I also know that you and
many others have also prayed for me. Don't you worry GOD does listen to all
of our prayers, and I know this for a fact. I already told everyone about
what happened to me when that Reverend that I knew for over four years at
the dialysis center where his wife was also a patient.

I come in there on a Monday morning waiting in the waiting room to go into
the dialysis clinic when he comes over to me and says, Marty today you will
have a miracle happen to you. Then the next few seconds, no more then five
seconds I was called to go into the dialysis clinic for my treatment. I was
just about to open the door to the clinic, my hand wasn't even yet on the
door knob when the phone rings in the office. Remember it was only five
seconds. They told me that the call was from The Cleveland Clinic and they
wanted to talk to me.

I go over to the sliding window from the office and it was my kidney
transplant coordinator. She tells me that there is a perfectly matched
kidney for me, and I should go and finish my dialysis then go home and
rest. Then be at The Cleveland Clinic at about midnight, and my transplant
surgery would begin at 7:30 that same morning.

Now how did that Reverend ever know that this would take place??? Joyce I
know that miracles do happen because it happened to me not once but twice
in my life. My bone marrow transplant as well as my kidney transplant, and I
am sure it will happen for you as well.

All that you need to do is to *expect the best and focus on that*. Keep
this CML and everything else out of your mind.

18's to you Joyce,

Marty

*EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
(MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.*

*WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
MIND. LEARN TO EXPECT AND NOT 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 MOVES INTO THE AREA OF POSSIBILITY.*

*EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
SUCCESSFUL OUTCOME...*

*FOCUS...*

[?]



On Mon, Jun 22, 2015 at 2:06 AM, Joyce Mesnarich joy...@htc.net wrote:

 Jeanie,
 So far I have had no side effects from the anti-hormone pills to shrink
 the tumors.  I don't know if they may come on after I have taken the meds
 longer or not.  I am to take them for 3 months.  I am praying they do their
 job and then it will be on to the surgery part of the treatment, followed
 by radiation.  Hopefully not chemo.  Thank you for your prayers and
 concern.  This group is so uplifting.
Joyce in IL



 On Jun 21, 2015, at 4:36 PM, 'Icandoallttc' via CMLHope wrote:

 Looks like you've had it all. So sorry for the diagnosis.  I know you are
 strong and we are here for you always. Are you having bad side effects from
 the pills to shrink the tumors?

 Prayers  Blessings Jeanie [image: ][image: ]18,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 21, 2015, at 12:13 AM, Joyce Mesnarich joy...@htc.net wrote:

 Jeanie,
 I did not have a ct scan.  At least not yet.  I have had mammograms, ultra

Re: [CMLHope] Jeans Moffitt visit

2015-06-22 Thread Marty Gartenberg

Beth, you know what Zavie would have to say don't you?

YIPPIE YAHOOY...

18,s

Marty

On Mon, Jun 22, 2015 at 10:47 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 That is really great!! [image: ❤]️[image: ❤]️

 Prayers  Blessings Jeanie [image: ][image: ]18,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 22, 2015, at 2:06 AM, Joyce Mesnarich joy...@htc.net wrote:

 Jeanie,
 So far I have had no side effects from the anti-hormone pills to shrink
 the tumors.  I don't know if they may come on after I have taken the meds
 longer or not.  I am to take them for 3 months.  I am praying they do their
 job and then it will be on to the surgery part of the treatment, followed
 by radiation.  Hopefully not chemo.  Thank you for your prayers and
 concern.  This group is so uplifting.
Joyce in IL



 On Jun 21, 2015, at 4:36 PM, 'Icandoallttc' via CMLHope wrote:

 Looks like you've had it all. So sorry for the diagnosis.  I know you are
 strong and we are here for you always. Are you having bad side effects from
 the pills to shrink the tumors?

 Prayers  Blessings Jeanie [image: ][image: ]18,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 21, 2015, at 12:13 AM, Joyce Mesnarich joy...@htc.net wrote:

 Jeanie,
 I did not have a ct scan.  At least not yet.  I have had mammograms, ultra
 sounds and MRIs.  I had 2 different biopsies, both confirming breast
 cancer.  I am now taking a pill to hopefully shrink the tumors before
 surgery. Thanks for your prayers and concern.
 Joyce in IL


 On Jun 20, 2015, at 9:13 AM, 'Icandoallttc' via CMLHope wrote:

 Oh no Joyce.  So sorry about the breast cancer!!
 Did they do a ct scan on your breast?
 Good luck on all the test.  My prayers are with you.
 Maybe you could go on the ponatinib if the other tki doesn't work.
 I have had complete positive response in 6 months.
 Have faith and courage. I am 77.  [image: ❤]️[image: ❤]️

 Prayers  Blessings Jeanie [image: ][image: ]18,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 11:54 PM, Joyce Mesnarich joy...@htc.net wrote:

 Jeanie,
 So happy that your new TKI is working.  On July 9 my hubby and I will go
 to see Dr Talpaz in MI to see if his new TKI, bosulif, is working.  In
 April it was not doing anything and they doubled his dose to 100 mg.  We
 are hoping that this does the trick.
 Best of luck on your upcoming ct scan.  Seems like it is always something,
 doesn't it?
 I was recently dx with breast cancer, so I am going through a bunch of
 tests, biopsies, etc. to see what my next step is.  I am 75, so this is not
 as big a deal to me as if I was younger.  But I will do whatever is
 necessary to fight this.
 Fight on, warriors.
Joyce in IL


 On Jun 19, 2015, at 12:43 PM, 'Icandoallttc' via CMLHope wrote:

 Hello to everyone and thanks for the uplifting.
 This tki is really working.
 Praise The Lord!!!

 Going to have a ct scan soon of my thorax to make sure everything is good.

 Happy Friday!!!

 Prayers  Blessings Jeanie [image: ][image: ]18,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 18, 2015, at 4:54 PM, bkbarney via CMLHope 
 cmlhope@googlegroups.com wrote:

 Jeannie..what FABULOUS NEWS :)You rock, I know this has been a
 very very difficult journey on ponatinibit's so nice to hear that it is
 doing it's job, and that you are adjusting to the medication...I am just
 s happy for you because I know it's been a really challenging time.
 your resiliency and staying your course with a positive outcome is a real
 lift for all of us struggling out hereMay your good news continue for
 decades to come...

  Hugs and 18's,
 Beth

 -Original Message-
 From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Thu, Jun 18, 2015 3:43 pm
 Subject: [CMLHope] Jeans Moffitt visit

  Blood test was great.  All counts normal.   Don't have to go back for 3 
 months.
 Yahoo!!!

 Prayers  Blessings Jeanie 18,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

 --
 --
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 A
 support group ofhttp://cmlhope.com
 -

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 received this message because you are subscribed to the Google Groups 
 CMLHope
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Re: [CMLHope] Jeans Moffitt visit

2015-06-20 Thread Marty Gartenberg

Joyce, you will overcome your latest bump in the road.

I will be praying for you.

Double even triple 18's to you.

Marty



On Fri, Jun 19, 2015 at 11:54 PM, Joyce Mesnarich joy...@htc.net wrote:

 Jeanie,
 So happy that your new TKI is working.  On July 9 my hubby and I will go
 to see Dr Talpaz in MI to see if his new TKI, bosulif, is working.  In
 April it was not doing anything and they doubled his dose to 100 mg.  We
 are hoping that this does the trick.
 Best of luck on your upcoming ct scan.  Seems like it is always something,
 doesn't it?
 I was recently dx with breast cancer, so I am going through a bunch of
 tests, biopsies, etc. to see what my next step is.  I am 75, so this is not
 as big a deal to me as if I was younger.  But I will do whatever is
 necessary to fight this.
 Fight on, warriors.
Joyce in IL


 On Jun 19, 2015, at 12:43 PM, 'Icandoallttc' via CMLHope wrote:

 Hello to everyone and thanks for the uplifting.
 This tki is really working.
 Praise The Lord!!!

 Going to have a ct scan soon of my thorax to make sure everything is good.

 Happy Friday!!!

 Prayers  Blessings Jeanie [image: ][image: ]18,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 18, 2015, at 4:54 PM, bkbarney via CMLHope 
 cmlhope@googlegroups.com wrote:

 Jeannie..what FABULOUS NEWS :)You rock, I know this has been a
 very very difficult journey on ponatinibit's so nice to hear that it is
 doing it's job, and that you are adjusting to the medication...I am just
 s happy for you because I know it's been a really challenging time.
 your resiliency and staying your course with a positive outcome is a real
 lift for all of us struggling out hereMay your good news continue for
 decades to come...

  Hugs and 18's,
 Beth

 -Original Message-
 From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Thu, Jun 18, 2015 3:43 pm
 Subject: [CMLHope] Jeans Moffitt visit

  Blood test was great.  All counts normal.   Don't have to go back for 3 
 months.
 Yahoo!!!

 Prayers  Blessings Jeanie 18,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

 --
 --
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 support group ofhttp://cmlhope.com
 -

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Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.

2015-06-19 Thread Marty Gartenberg

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.

  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. [image: wink_smile]
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Re: [CMLHope] Humor is the spice of life. When your laughing your not crying.

2015-06-19 Thread Marty Gartenberg

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
https://www.biblegateway.com/passage/?search=Psalm+91#fen-NIV-15397a]
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
https://www.biblegateway.com/passage/?search=Psalm+91#fen-NIV-15410b] 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: 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

[CMLHope] Humor is the spice of life. When your laughing your not crying.

2015-06-18 Thread Marty Gartenberg

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.[image: wink_smile]

-- 
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Re: [CMLHope] Jeans Moffitt visit

2015-06-18 Thread Marty Gartenberg

Hi Jeanie,

That is some really great news. Keep up the effort. By the way are you
PCRU? If so then for how long and is your doctor thinking about you
going off the TKI?

18's,

Marty

On Thu, Jun 18, 2015 at 4:43 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Blood test was great.  All counts normal.   Don't have to go back for 3
 months.  Yahoo!!!

 Prayers  Blessings Jeanie 18,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

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

 You received this message because you are subscribed to the Google Groups
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Re: [CMLHope] Stopping Gleevec

2015-06-17 Thread Marty Gartenberg

Hi Angie,

You are not thee only one that has stopped your TKI and felt that way.
sometimes something that we take as far as any TKI's ends up being a crutch
for us and we always seem to worry if this or that will come back to haunt
us. It is a normal human response and we worry about it.

Angie, since your really feeling better without the Gleevec then you should
learn to live your life in the best way that you can.

I have seen this many times before. A man that both Zavie and I knew was on
Alpha Interferon and suffered immensely from it's horrible side effects. He
suffered for many years and when he was finally PCRU everyone told him to
stop using it anymore but he still continued still suffering because it had
become a crutch for him. He had the same feelings as you now have and after
a lot of coaching from everyone he finally stopped it.

He has been off of it for many years and no reoccurrence of CML ever came
back to him. His system finally burned out his CML.

Remember that everything in life has a double edged soared. If you do
something will it come back to haunt you or if you don't do something will
it come back to haunt you??

I just can't live my life that way, and if something does come back then I
will deal with it.
Remember me telling everyone that Leukemia is both a disease of not only
the body but it also poisons the mind.

Angie, why not start writing a diary and put everything in there that you
have gone through the day? I do it and it lets me reflect about what I
could have done better or worse during the day. I call it my frustrations
and how to deal with them, and it really works for me as I am sure it will
also work for you or anyone else. By the way I see that Giora sent you his
response. read it if you haven't as yet.

Here is something called expect the best Please read it and it will also
help you with yourself.

One last thing. I am not a doctor but have gone through a lot of things in
my life health wise as you already know. Have you ever wondered why I am
still alive? I did at one time but maybe it is because I try helping others
as a promise that I once made to GOD and also received help myself from
others. It is a two way street, or I am the luckiest son of a bitch on this
planet ???
18's,

Marty



*EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
(MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.*

*WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
MIND. LEARN TO EXPECT AND NOT 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 MOVES INTO THE AREA OF POSSIBILITY.*

*EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
SUCCESSFUL OUTCOME...*

*FOCUS...*

 18's,

Marty

On Tue, Jun 16, 2015 at 9:02 PM, ANGELYN ESDERS esd...@rogers.com wrote:

 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] Platelets

2015-06-14 Thread Marty Gartenberg

Hi Skip,

With all that you have been through and still going through you are the
longest surviving CML patient that I know of. 37 years and counting, but
who is counting, you just keep on going on.

This is for you to continue on 18's dear Skip.

Marty

On Sun, Jun 14, 2015 at 9:05 AM, 'Skip Duffie' via CMLHope 
cmlhope@googlegroups.com 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
 https://overview.mail.yahoo.com/mobile/?.src=Android
 --
   *From*:'Icandoallttc' via CMLHope cmlhope@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 [image: ][image: ]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] Cml and Shingles vaccine

2015-06-12 Thread Marty Gartenberg

Hi Kothal,

Good question. I spoke with my doctor about this and since I have had two
episodes of the Harpies Zoster virus (Shingles) he told me to go ahead and
have the vaccine. However I am not or have ever been on any TKI's because
they were not yet available 26 years ago when I had my bone marrow
transplant.

If I were you I would speak with your doctors about getting this vaccine.
Just so you know if you are not on socialized medicine this vaccine costs
about two hundred dollars in the United States.

18's, Symbol for life.

Marty

On Fri, Jun 12, 2015 at 1:59 AM, Poongothai R poongotha...@hotmail.com
wrote:






 *Hi  friends! Just want to know we cml warriors can take Shingles
 vaccine?Kothai*

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Re: [CMLHope] Re: Cml and Shingles vaccine

2015-06-12 Thread Marty Gartenberg

So right Marty.
Never had them but did have chicken pox.

If you already had the chicken pox then the virus is already in you. Just
be sure if you see a small rash just starting then contact your doctor. If
you do start to get the shingles then there is a cream called silver sulfur
dyne. Ask your doctor for a prescription which should be good for a year
just in case. This cream can also be used for treating burns, even sunburn.

About three years ago I was trying to light the pilot light of my gas hot
water in Pennsylvania.
It blew out a flame that burned part of my face. Hurt badly so I took some
Percocet and applied the cream and it felt much better. No permanent burns
to my face.

18's,

Marty

On Fri, Jun 12, 2015 at 11:41 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 So right Marty.
 Never had them but did have chicken pox.

 Prayers  Blessings Jeanie [image: ][image: ]18,s
 Dx 1/2004
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015

 On Jun 12, 2015, at 11:31 AM, Marty Gartenberg wa2...@gmail.com wrote:

 Angie who knows what to say about this? Some doctors say no while others
 say yes. Since I already got the shingles way before my kidney transplant
 and way after my bone marrow transplant it was fine then. But now after my
 kidney transplant and that I am on a lot of immune suppressive drugs,
 frankly I don't know what I would do now? I have already had two bouts with
 the shingles and I never want another killer attack from the shingles.

 Read on.


 http://www.webmd.com/skin-problems-and-treatments/shingles/news/20120705/shingles-vaccine-may-be-ok-for-autoimmune-patients

 18's,

 Marty

 On Fri, Jun 12, 2015 at 8:21 AM, Peter pksch...@gmail.com wrote:

 My hematologist said, there are no data or studies available about this
 subject, so nobody really knows.
 For this reason, no doctor will recommend it.
 Zostavax contains a live virus; if your immune system is not up to snuff,
 you could well end up getting shingles from the vaccine.
 He said, it is up to me if I want to take that chance, but he will not
 stick out his neck and recommend it.



 On Friday, June 12, 2015 at 1:59:23 AM UTC-4, Poongothai Ramasamy wrote:






 *Hi  friends! Just want to know we cml warriors can take Shingles
 vaccine?Kothai*

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Re: [CMLHope] Re: Cml and Shingles vaccine

2015-06-12 Thread Marty Gartenberg

Angie who knows what to say about this? Some doctors say no while others
say yes. Since I already got the shingles way before my kidney transplant
and way after my bone marrow transplant it was fine then. But now after my
kidney transplant and that I am on a lot of immune suppressive drugs,
frankly I don't know what I would do now? I have already had two bouts with
the shingles and I never want another killer attack from the shingles.

Read on.

http://www.webmd.com/skin-problems-and-treatments/shingles/news/20120705/shingles-vaccine-may-be-ok-for-autoimmune-patients

18's,

Marty

On Fri, Jun 12, 2015 at 8:21 AM, Peter pksch...@gmail.com wrote:

 My hematologist said, there are no data or studies available about this
 subject, so nobody really knows.
 For this reason, no doctor will recommend it.
 Zostavax contains a live virus; if your immune system is not up to snuff,
 you could well end up getting shingles from the vaccine.
 He said, it is up to me if I want to take that chance, but he will not
 stick out his neck and recommend it.



 On Friday, June 12, 2015 at 1:59:23 AM UTC-4, Poongothai Ramasamy wrote:






 *Hi  friends! Just want to know we cml warriors can take Shingles
 vaccine?Kothai*

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Re: [CMLHope] off Sprycel

2015-06-09 Thread Marty Gartenberg

Hi Choi,

Pleural Effusions are quite common to people that are using Sprycel
sometimes even on low doses. Since he also has the E55G mutation he or you
may want to get in touch with Dr. Brian Druker and Dr. Moshie Talpaz.
Both of these doctors are the CML experts Dr. Druker was the one that made
STI-571 later to become Gleevec.
Mailing Address

Oregon Health  Science University
3181 S.W. Sam Jackson Park Road
Telephone NumberGeneral information

503 494-8311

Portland, OR 97239.

Or Dr. Moshie Talpaz.
U of M Internal Medicine Hematology/Oncology
http://maps.google.com/maps?q=1500%20E%20Medical%20Center%20Dr%20%205911
Cancer Center Floor B1 Reception B
1500 E Medical Center Dr SPC 5911
Ann Arbor
MI
48109
Phone:
734-647-8901
Fax:

734-647-866

Good luck

18's Symbol for life

Marty



On Tue, Jun 9, 2015 at 6:47 AM, Choi saehyun...@naver.com wrote:

 Hi, this is Choi from South Korea. One of my CML friends had some problems
 and I just wonder who had a similar experience.

 He was diagnosed with CML chronic phase on july 2012 and started Gleevec
 400mg for 16 months and switched to Sprycel due to E355G mutation.
 At that time his PCR was 1.89. He started Sprycel  and E355G mutaiton was
 disappered. He was on Sprycel for 12 months.
 He developed pleural effusions after 12 months of Sprycel at that time his
 dose was 100mg. His doctor stopped Sprycel for 2 weeks and restarted
 Sprycel 80mg for 3 months.
 Once again he developed pleural effusions so he was off Sprycel for 4
 weeks and restarted Sprycel 60mg until now and still had minor pleural
 effusions.
 PCR count was 0.37, 0.47, 0.45 and never drop to under 0.1% so his doctor
 was considering to switch to other drugs but hesitated to switch because of
 he had E355G mutation.
 Is there any one who had a similar experience?

 Choi.

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Re: [CMLHope] last Fridays test

2015-06-09 Thread Marty Gartenberg

Hi Richard, Very good hemoglobin count! This tells me something. Your TKI
is going it's job and your kidneys are working well. It is your kidneys
that produce a hormone (can't remember the name of this hormone at the
moment) that goes to your bone marrow to help promote hemoglobin and red
blood cell production.

I have been anemic for many years ever since my kidneys failed and had to
get either Procrit or Epogen injections about once a month as my hemoglobin
directed. My HGB was always in the range of in the upper 8's to just
breaking 10 for many years. Always tired and a lack of energy until I would
get the injection of Epogen during my dialysis treatments However the
dialysis treatments would usually knock the crap out of me so with or with
out Procrit I usually still felf very worn down, tired and a lack of energy

Now that I had a kidney transplant along with a TURP procedure I can once
again be able to urinate like a fire hose putting out a fire in a ten story
building. Also my hemoglobin (HGB) has slowly been creeping up from an 8 to
a 12 as of yesterdays blood work, so my new kidney is working well with my
Creatinine level being at 1. Normal Creatnine is usually any ware from .3
to 1.4 depending on the lab that did the test.

Amazing, putting a 20 year old man's kidney into a now 71 year old man. I
was 70 at the time of my kidney transplant just three and a half months
ago. I guess good things come in small packages [?]

18's,

Marty


On Mon, Jun 8, 2015 at 11:59 PM, Richard H rbhuffm...@gmail.com wrote:

 Hemoglobin is climbing without the shot  now at 12.4.  YEAH!!!  The
 CML was just dropped to .03% as of last Tuesday.   So all is well here.

 18's

 Richard H.

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Re: [CMLHope] Is the high cost of CML care worth it?

2015-06-06 Thread Marty Gartenberg

Dear Robert, at first I was perplexed by your question 
*Is the high cost of CML care worth it? Then I read your post to the
bottom.*
*I'm sure you know no matter how much money is spent on keeping us alive is
a good investment. Twenty six years I was an experiment having a bone
marrow transplant which was very costly, but I survived.*
*Now I recently had a kidney transplant three months ago) because way back
when I had the BMT all of the radiation and chemo started to destroy my
kidneys, which took many years to put me into complete kidney failure.*
*Now I must take dozens of pills each and every day for the rest of my
life. One of these pills cost me more then $900 every two weeks. Since I am
now in the drug donut hole I must bare the cost out of pocket. However in
another 5 or 6 months I will no longer require them (hopefully) This drug
is for not letting me get the CMV virus, and I am at high risk for
acquiring CMV because although I was CMV free and my donor was CMV (*
*Cytomegalovirus)** positive. *
*So between my both transplants I have gone through a lot of out of pocket
money, but I am still alive and simply living my life. Was it all worth it?
You bet it was!*
*When ever I end a post I will put in two numbers at the end 1 and 8 which
symbolizes life*

*18's*

*Marty*


On Sat, Jun 6, 2015 at 3:01 AM, 'RobertGlover from Hornsby' via CMLHope 
cmlhope@googlegroups.com wrote:

  Thank you for posting this link
 http://www.cmleukemia.com/asco-2015---chicago.html  to the cmlhope site.

 I zoomed in on the link to the article:


 *Is the high cost of CML care worth it? Which finished with the
 conclusion: *



 * Our findings showed that, despite high costs, CML care provided good
 value for money. * *

 Since 1991 when I was first diagnosed with CML a huge amount of money has
 been spent keeping me alive, currently it is $148 Aust per day.  ($1 Aust =
 $0.76 US).
 Fortunately, we Australians, have a Universal Health Levy, which pays the
 major portion of this, for which myself, wife, three children and one
 Grandson are immensely grateful.

 I would also like to acknowledge Roche Pharmaceuticals who provided me
 with Interferon in a clinical trial. As well as Novartis who provided me
 with both Glivec and Nilotinib in clinic trials.

 While CML stopped me from participating in any energetic activities
 including sports such as tennis, I soon adjusted and found other activities
 which give me a pleasant life style.  Most importantly, I was able to
 continue working until 61 years old paying Income Tax and the Medicare
 Health Levy which now helps to fund my medical expenses.

 It is reassuring to read that people doing scientific research, also agree
 that money spent keeping us CMLers living longer lives, is good value for
 the whole community.


 Regards
 Robert



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Re: [CMLHope] Where is everyone?

2015-06-06 Thread Marty Gartenberg

Angie, I always want you to remember that you are your own best advocate.
No one will take your hand and lead you where you can lead yourself.
Make sure that you don't forget to contact these two doctors.

18's,

Marty

On Fri, Jun 5, 2015 at 10:39 PM, ANGELYN ESDERS esd...@rogers.com wrote:

 Marty, thank you so very much! I will use this help that you have given
 me. I appreciate it hugely! Hugely.
 Most sincerely,
 Angie

  --
  *From:* Marty Gartenberg wa2...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Friday, June 5, 2015 8:47 PM

 *Subject:* Re: [CMLHope] Where is everyone?

 Brian J. Druker, MD
 Director, OHSU Knight Cancer Institute
 JELD-WEN Chair of Leukemia Research
 Investigator, Howard Hughes Medical Institute
 *Admin Unit:* The Knight Cancer Institute
 *Email:* druk...@ohsu.edu
 *Phone:* 503-494-5596
 *Lab Phone:* 503-494-5599
 *Fax:* 503-494-3688
 *Office:* Biomedical Research Building 513
 *Mail Code:* L592

 Dr. Moshie Talpaz
 A
 Univers Of Mich Comp Canc Ctr
 http://www.healthgrades.com/group-directory/mi-michigan/ann-arbor/univers-of-mich-comp-canc-ctr-fwjdn1500
 E Medical Center DrAnn Arbor, MI 48109(734) 647-8901 (Office)(734)
 232-1328 (Fax)

 18's

 Marty



 On Fri, Jun 5, 2015 at 5:54 PM, ANGELYN ESDERS esd...@rogers.com wrote:

 Have you any idea how I could contact either of them? I think it could be
 well worth while.
 Thank you for the suggestion, Marty.
 Angie

  --
  *From:* Marty Gartenberg wa2...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Friday, June 5, 2015 4:57 PM
 *Subject:* Re: [CMLHope] Where is everyone?

 Hi Angie,

 I have a suggestion for you. Why not speak to one of the CML gurus like
 Dr. Brian Druker or Moshie Talpaz. They are both very fine CML doctors

 I hope it helps you out

 18's,

 Marty



 On Fri, Jun 5, 2015 at 9:32 AM, ANGELYN ESDERS esd...@rogers.com wrote:

 I'm still sitting here anemic and with no platelets. They don't know WHAT
 to do with me. :(
 Angie in Canada

 -































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Re: [CMLHope] Where is everyone?

2015-06-06 Thread Marty Gartenberg

Beth, anyone ever tell you that your an angle? Well, I'm telling you!

18,s sweet and caring person that you are.

Marty

PS. He really saved your life because it was Bashert (meant to be). You as
well as I have a reason for our lives, and I am lucky enough to know
exactly what it is.

On Sat, Jun 6, 2015 at 12:16 AM, bkbarney via CMLHope
cmlhope@googlegroups.com wrote:

Dear Angie,

I am so sorry you are having such trouble with your counts...I feel for
you and know the fear involved when people say to you I don't know what
to do with you.. I heard those words myself...some time ago...
I see Dr. Druker, as several people on this site also see him. I travel
from Chicago to Oregon to get his wisdom...I am seeing him on June 25th at
9 a.m...you can take my appointment..as my CML is stable,...you need
the time more and I can reschedule..if this helps you..Just say Beth Katz
from CML group will reschedule her appt to get you in as soon as possible.
He would need your records sent to him first before he sees you..if you
feel able to fly with your counts as they are..I can wait a month or
more..call ASAP.

he really saved my life. Hope this helps..
18s Beth

-Original Message-
From: ANGELYN ESDERS esd...@rogers.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Jun 5, 2015 8:39 pm
Subject: Re: [CMLHope] Where is everyone?

Marty, thank you so very much! I will use this help that you have
given me. I appreciate it hugely! Hugely.
Most sincerely,
Angie

--
*From:* Marty Gartenberg wa2...@gmail.com
*To:* cmlhope@googlegroups.com
*Sent:* Friday, June 5, 2015 8:47 PM
*Subject:* Re: [CMLHope] Where is everyone?

Brian J. Druker, MD
Director, OHSU Knight Cancer Institute
JELD-WEN Chair of Leukemia Research
Investigator, Howard Hughes Medical Institute
*Admin Unit:* The Knight Cancer Institute
*Email:* druk...@ohsu.edu
*Phone:* 503-494-5596
*Lab Phone:* 503-494-5599
*Fax:* 503-494-3688
*Office:* Biomedical Research Building 513
*Mail Code:* L592

Dr. Moshie Talpaz
A
Univers Of Mich Comp Canc Ctr
http://www.healthgrades.com/group-directory/mi-michigan/ann-arbor/univers-of-mich-comp-canc-ctr-fwjdn
1500 E Medical Center Dr Ann Arbor, MI 48109 (734) 647-8901 (Office) (734)
232-1328 (Fax)

18's

Marty

On Fri, Jun 5, 2015 at 5:54 PM, ANGELYN ESDERS esd...@rogers.com
wrote:

Have you any idea how I could contact either of them? I think it could
be well worth while.
Thank you for the suggestion, Marty.
Angie

--
*From:* Marty Gartenberg wa2...@gmail.com
*To:* cmlhope@googlegroups.com
*Sent:* Friday, June 5, 2015 4:57 PM
*Subject:* Re: [CMLHope] Where is everyone?

Hi Angie,

I have a suggestion for you. Why not speak to one of the CML gurus like
Dr. Brian Druker or Moshie Talpaz. They are both very fine CML doctors

I hope it helps you out

18's,

Marty

On Fri, Jun 5, 2015 at 9:32 AM, ANGELYN ESDERS esd...@rogers.com
wrote:

I'm still sitting here anemic and with no platelets. They don't know
WHAT to do with me. :(
Angie in Canada

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[CMLHope] Where is everyone?

2015-06-05 Thread Marty Gartenberg

Is everyone alright? I haven't a post from anyone in a long time.

18's

Marty

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Re: [CMLHope] Where is everyone?

2015-06-05 Thread Marty Gartenberg

Hi Angie,

I have a suggestion for you. Why not speak to one of the CML gurus like Dr.
Brian Druker or Moshie Talpaz. They are both very fine CML doctors

I hope it helps you out

18's,

Marty

On Fri, Jun 5, 2015 at 9:32 AM, ANGELYN ESDERS esd...@rogers.com wrote:

 I'm still sitting here anemic and with no platelets. They don't know WHAT
 to do with me. :(
 Angie in Canada

  --
  *From:* Marty Gartenberg wa2...@gmail.com
 *To:* CMLHope@googlegroups.com
 *Sent:* Friday, June 5, 2015 7:35 AM
 *Subject:* [CMLHope] Where is everyone?

 Is everyone alright? I haven't a post from anyone in a long time.

 18's

 Marty
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Re: [CMLHope] Where is everyone?

2015-06-05 Thread Marty Gartenberg

Brian J. Druker, MD
Director, OHSU Knight Cancer Institute
JELD-WEN Chair of Leukemia Research
Investigator, Howard Hughes Medical Institute
*Admin Unit:* The Knight Cancer Institute
*Email:* druk...@ohsu.edu
*Phone:* 503-494-5596
*Lab Phone:* 503-494-5599
*Fax:* 503-494-3688
*Office:* Biomedical Research Building 513
*Mail Code:* L592

Dr. Moshie Talpaz
A
Univers Of Mich Comp Canc Ctr
http://www.healthgrades.com/group-directory/mi-michigan/ann-arbor/univers-of-mich-comp-canc-ctr-fwjdn1500
E Medical Center DrAnn Arbor, MI 48109(734) 647-8901 (Office)(734) 232-1328
(Fax)


18's


Marty

On Fri, Jun 5, 2015 at 5:54 PM, ANGELYN ESDERS esd...@rogers.com wrote:

 Have you any idea how I could contact either of them? I think it could be
 well worth while.
 Thank you for the suggestion, Marty.
 Angie

  --
  *From:* Marty Gartenberg wa2...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Friday, June 5, 2015 4:57 PM
 *Subject:* Re: [CMLHope] Where is everyone?

 Hi Angie,

 I have a suggestion for you. Why not speak to one of the CML gurus like
 Dr. Brian Druker or Moshie Talpaz. They are both very fine CML doctors

 I hope it helps you out

 18's,

 Marty



 On Fri, Jun 5, 2015 at 9:32 AM, ANGELYN ESDERS esd...@rogers.com wrote:

 I'm still sitting here anemic and with no platelets. They don't know WHAT
 to do with me. :(
 Angie in Canada

  --
  *From:* Marty Gartenberg wa2...@gmail.com
 *To:* CMLHope@googlegroups.com
 *Sent:* Friday, June 5, 2015 7:35 AM
 *Subject:* [CMLHope] Where is everyone?

 Is everyone alright? I haven't a post from anyone in a long time.

 18's

 Marty
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Re: [CMLHope] Re: Mom's Obituary

2015-05-29 Thread Marty Gartenberg

I miss my Mommy Lottie.

18's

Marty

On Fri, May 29, 2015 at 7:35 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi all
 I  sending this to remember and honor Millie, our brave cml warrior who
 lost her battle last year.  She was so brave and fought pain every day of
 her life.

 She uplifted this group daily with her prayers and recipes.

 I know she is resting now in perfect peace.
 Love you Millie!!

 Prayers  Blessings Jeanie [image: ][image: ]18,s
 Dx 1/2004
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015

 On Jul 5, 2014, at 11:26 AM, C.M. Houtz ho...@ptd.net wrote:



 - Original Message -
 *From:* Rick Houtz rickho...@yahoo.com
 *To:* Claudia Houtz ho...@ptd.net ; Richard Houtz kielb...@ptd.net ; Pete
 Houtz peteho...@mymidwesthome.com
 *Sent:* Friday, July 04, 2014 11:42 PM
 *Subject:* Mom's Obituary

  See link here-  Claudia Houtz Obituary, Lewistown Valley, Tamaqua,
 PA | Zizelmann•Roche and Gulla Funeral Homes, Tamaqua, Coaldale,
 Pennsylvania
 http://www.zrgfuneralhomes.com/obituary/Claudia-M.-Houtz/Lewistown-Valley-Tamaqua-PA/1398612

 Also, here's a link for making donations in her memory to the St. Luke's
 Hospice
 http://www.slhn.org/Donate-St-Lukes/Hospice-Memorial-Gifts.aspx

 Chris...can you please post these to her CML forum?

 Thanks,

 Rick

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Re: [CMLHope] A bit of good news today

2015-05-27 Thread Marty Gartenberg

Sherri

PCRU! EXCELENT

18's for sure.

Marty[?] You need a great big hug!

On Wed, May 27, 2015 at 3:04 PM, sherri swanson swanson.sherri...@gmail.com
 wrote:

 Hi Everyone!

 In the mist of all the bad news I've been getting lately, I got some good
 news this afternoon. My Onc called me to tell me that my BCR/ABL was
 undetectable.  So with that that good news still ringing in my ears, I went
 for walk. AS I was walking it started to rain. I just didn't care. I
 continued my walk like it was a sunny day and 85 degrees. I really needed
 that good news.

 L'chaim

 Sherri

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Re: [CMLHope] Picture of Marty and Shelly

2015-05-26 Thread Marty Gartenberg

Hi Jeanie,

So I see that you walk with GOD. This should be interesting

Footprints in the SandFootprints in the Sand, a beautiful poem!

One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
One belonging to me and one to my Lord.

After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.

This really troubled me, so I asked the Lord about it.
Lord, you said once I decided to follow you,
You'd walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don't understand why, when I needed You the most, You would leave me.

He whispered, My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you.

18's sweetie.

Marty

On Tue, May 26, 2015 at 5:16 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi Marty and very good advice.
 I started exercising young in life and have been a runner and walker for
 many years. When my leukemia came back in jan of this year I lost all my
 energy.  I have been on this new chemo for 5 months now-- I think it's
 going to do the job.
 So started back to walking or you could say strolling hehe.
 I walk till I get tired.
 Yes get good walking shoes and comfortable socks then just head out the
 door.   My first walk I call my walk with God because I take the time to
 notice all the flowers and wild life around me that He has given us to
 enjoy. My second round I focus more on my walking.   Glad you are getting
 around good!!  Maybe you will make that cruise this year.

 Prayers  Blessings Jeanie [image: ][image: ]18,s
 Dx 1/2004
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015

 On May 26, 2015, at 12:16 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi Jeanie,

 Sorry to hear about your husband I didn't know.

 Jeanie I know that you have gone through a lot of crap and there is
 nothing you can do about that but put it in your past where it belongs. You
 must look at the future.

 Ever since my last hospitalization it knocked the crap out of me but even
 though I feel weak or lazy I just get off of my azz and exercise. You must
 put your mind in a different mode and just do it. Make it burn baby and
 maybe you may not feel so good right after but then after a rest you will
 feel Invergrated, and do you know why? It is because you did it!!! This is
 what I always do, in fact my physical therapist was here today and gives me
 different exercises to do. She always says no more then 20 and I nod my
 head and do 30 or forty. She asks me to walk around the house 3 times and I
 walk 4 times, because it is in my mindset.

 I will give you some advice.Whenever you do walk make sure to have
 sneakers and socks on, and walk using toe heal and keep your body up and
 take pride in what your doing. Before to long you will look forward to
 walking because you have just entered it into your mindset, and the more
 that you do the better you will feel because you now realize that in fact
 you CAN DO IT! Believe my I know because it works on me.

 How many people do you know that go in for a kidney transplant and only
 spend three days in the hospital? I would get out of bed, grab my IV pole
 and walk. My transplant surgeon said that he just wanted to make sure that
 I wouldn't spring a leak. I was out of there in three days because I just
 put it into my mindset and anyone can do it if they have the will to do so.
 FOCUS!!!

 A poem for you Jeanie

 EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
 CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
 YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
 (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.

 WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
 MIND. LEARN TO EXPECT AND NOT 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 MOVES INTO THE AREA OF POSSIBILITY.

 EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
 BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
 SUCCESSFUL OUTCOME...

 FOCUS...


 Looking good Marty.
 Your wife is very pretty.
 I usually cruise about twice a year but due to my leukemia rearing it's
 ugly head had to opt out of this years cruises.
 My hubby and I took a cruise 2 months before God took him home.  He sure
 did enjoy it.
 I hope you get to go on one soon.
 I started back to walking.  I

Re: [CMLHope] Picture of Marty and Shelly

2015-05-26 Thread Marty Gartenberg

Hi Jeanie,

Sorry to hear about your husband I didn't know.

Jeanie I know that you have gone through a lot of crap and there is nothing
you can do about that but put it in your past where it belongs. You must
look at the future.

Ever since my last hospitalization it knocked the crap out of me but even
though I feel weak or lazy I just get off of my azz and exercise. You must
put your mind in a different mode and just do it. Make it burn baby and
maybe you may not feel so good right after but then after a rest you will
feel Invergrated, and do you know why? It is because you did it!!! This is
what I always do, in fact my physical therapist was here today and gives me
different exercises to do. She always says no more then 20 and I nod my
head and do 30 or forty. She asks me to walk around the house 3 times and I
walk 4 times, because it is in my mindset.

I will give you some advice.Whenever you do walk make sure to have sneakers
and socks on, and walk using toe heal and keep your body up and take pride
in what your doing. Before to long you will look forward to walking because
you have just entered it into your mindset, and the more that you do the
better you will feel because you now realize that in fact you CAN DO IT!
Believe my I know because it works on me.

How many people do you know that go in for a kidney transplant and only
spend three days in the hospital? I would get out of bed, grab my IV pole
and walk. My transplant surgeon said that he just wanted to make sure that
I wouldn't spring a leak. I was out of there in three days because I just
put it into my mindset and anyone can do it if they have the will to do so.
FOCUS!!!

A poem for you Jeanie

EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
(MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.

WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
MIND. LEARN TO EXPECT AND NOT 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 MOVES INTO THE AREA OF POSSIBILITY.

EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
SUCCESSFUL OUTCOME...

FOCUS...


Looking good Marty.
Your wife is very pretty.
I usually cruise about twice a year but due to my leukemia rearing it's
ugly head had to opt out of this years cruises.
My hubby and I took a cruise 2 months before God took him home.  He sure
did enjoy it.
I hope you get to go on one soon.
I started back to walking.  I really don't feel like it but trying it
anyway.
Keep up the good work.

Prayers  Blessings Jeanie [image: ][image: ]18,s

On Tue, May 26, 2015 at 10:00 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Looking good Marty.
 Your wife is very pretty.
 I usually cruise about twice a year but due to my leukemia rearing it's
 ugly head had to opt out of this years cruises.
 My hubby and I took a cruise 2 months before God took him home.  He sure
 did enjoy it.
 I hope you get to go on one soon.
 I started back to walking.  I really don't feel like it but trying it
 anyway.
 Keep up the good work.

 Prayers  Blessings Jeanie [image: ][image: ]18,s
 Dx 1/2004
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015

 On May 25, 2015, at 5:50 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Well, I have been posting here for a long time and no one knows what I or
 Shelly look like. I must admit that this picture was taken several years
 ago before my kidneys failed. We were on a cruise and since then I have
 shed some weight.

 My beautiful wife Shelly is the love of my life.

 Once I'm feeling better and through with all that I am now going through
 Shelly and I are going to take a nice cruise just like we used to do.

 18's,

 Marty

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Re: [CMLHope] Picture of Marty and Shelly

2015-05-25 Thread Marty Gartenberg

Hi Angie,

I hope that your doing better. I just wanted everyone to see who I am and
especially my wife Shelly. Is it any wonder that her birthday was May 20th
and mine on May 21st and that was also the day I got my bone marrow
transplant back in 1989.

Angie I finally figured why we are such a close knit group. It is because
we stand by each other. I hope that you enjoy the video I am sending. It
will be a foot stomper. And it comes from all over the world in sync.

https://www.youtube.com/watch?v=Us-TVg40ExM

Let me know if you were able to see it.

18's,

Marty

On Mon, May 25, 2015 at 8:19 PM, ANGELYN ESDERS esd...@rogers.com wrote:

 Lovely to meet you both[image: *:) happy]
 Angie

  --
  *From:* Marty Gartenberg wa2...@gmail.com
 *To:* CMLHope@googlegroups.com
 *Sent:* Monday, May 25, 2015 5:50 PM
 *Subject:* [CMLHope] Picture of Marty and Shelly

 Well, I have been posting here for a long time and no one knows what I or
 Shelly look like. I must admit that this picture was taken several years
 ago before my kidneys failed. We were on a cruise and since then I have
 shed some weight.

 My beautiful wife Shelly is the love of my life.

 Once I'm feeling better and through with all that I am now going through
 Shelly and I are going to take a nice cruise just like we used to do.

 18's,

 Marty
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[CMLHope] Picture of Marty and Shelly

2015-05-25 Thread Marty Gartenberg

Well, I have been posting here for a long time and no one knows what I or
Shelly look like. I must admit that this picture was taken several years
ago before my kidneys failed. We were on a cruise and since then I have
shed some weight.

My beautiful wife Shelly is the love of my life.

Once I'm feeling better and through with all that I am now going through
Shelly and I are going to take a nice cruise just like we used to do.

18's,

Marty

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Re: [CMLHope] Platelets

2015-05-24 Thread Marty Gartenberg

Hi Angie,

Please read this about the effects to not only your platelet counts but
also your red cell count. Ragavan gave you some valuable advice but you
need to find the best supplement that contains the best form of Papya leaf
extract. By the way when I had my bone marrow transplant one of my friends
got me some of it and it did work.

Let me do some research and get back to you. In the meantime you must be
extremely careful not to injure your self. don't walk around barefoot or
even use slippers. It will not offer any protection if you should stub one
of your toes. I know all about that because it happened to me.

OK on to some research. By the way I am slowly starting to recover from the
Staff infection in my lungs. I have a picc line and wear an infusion pump
24/7 for the next few weeks.

I will get back to you

18's,

Marty

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757281/

On Sat, May 23, 2015 at 10:07 PM, ANGELYN ESDERS esd...@rogers.com wrote:

 Thank you very much, Ragavan, for your suggestion.
 I immediately ordered some organic papaya leaf tea and I am awaiting its
 arrival.
 I can't wait to try it as my platelets are still so very low in number.
 Minimum level is 150-450.I have 9. I have red spots all over me and
 big, purple bruises from anywhere I am touched.
 I have traveled in India 3 times. In which part of India do you live?
 Angie

  --
  *From:* Gopalsamy Ragavan graga...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Tuesday, May 19, 2015 8:15 AM
 *Subject:* Re: [CMLHope] Platelets

 I am in India. I have given the method below.

 You can prepare it very easily. Or you can drink two spoons of papaya leaf
 extract in the morning.

 Procedure:
 Dry papaya leaves completely.
 Add cumin seeds and little black pepper and powder the dried papaya leaves.
 Keep it safe in a container.

 Add water to spoon full of papaya leaf powder and boil it.
 Filter it and drink warm.

 regards,
 Ragavan






 On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS esd...@rogers.com wrote:

 Thank you very much for your reply.
 I will try to find papaya leaf tea.
 I am in Canada...where are you?
 Angie

  --
  *From:* Gopalsamy Ragavan graga...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Sunday, May 17, 2015 7:08 AM
 *Subject:* Re: [CMLHope] Platelets

 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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 --
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Re: [CMLHope] Platelets

2015-05-24 Thread Marty Gartenberg

Hi Angie,

I am back with some important information for you

There is a company called Puritans Pride that sells exactly what I am
talking about. But one and get a total of three for only $13.95. They also
sell six bottles buy just buy the three for now and give it some time and
see how it works on you.

http://www.puritan.com/papaya-enzymes-129/chewable-super-papaya-enzyme-plus-000982

Also I think that you might want to find out the root cause of your low
platelet count. I am betting on the TKI your on now. Depending on what your
PCR shows your doctor may think about lowering your dose, or in the future
think about switching you to another TKI.

I would also get in contact with Dr. Brian Druker and or Dr. Moshie Talpaz
for their advice.

I hope that I was able to help you out.
I believe that if you help someone then it will come back to you when you
really need it.

Maybe my kidney transplant? Maybe my bone marrow transplant? Who knows but
no matter what I will still dedicate my life to try and help people if I
possibly can.

Now you know why I always end with 18's (life)

Marty

On Sun, May 24, 2015 at 8:24 AM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi Angie,

 Please read this about the effects to not only your platelet counts but
 also your red cell count. Ragavan gave you some valuable advice but you
 need to find the best supplement that contains the best form of Papya leaf
 extract. By the way when I had my bone marrow transplant one of my friends
 got me some of it and it did work.

 Let me do some research and get back to you. In the meantime you must be
 extremely careful not to injure your self. don't walk around barefoot or
 even use slippers. It will not offer any protection if you should stub one
 of your toes. I know all about that because it happened to me.

 OK on to some research. By the way I am slowly starting to recover from
 the Staff infection in my lungs. I have a picc line and wear an infusion
 pump 24/7 for the next few weeks.

 I will get back to you

 18's,

 Marty

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757281/

 On Sat, May 23, 2015 at 10:07 PM, ANGELYN ESDERS esd...@rogers.com
 wrote:

 Thank you very much, Ragavan, for your suggestion.
 I immediately ordered some organic papaya leaf tea and I am awaiting its
 arrival.
 I can't wait to try it as my platelets are still so very low in number.
 Minimum level is 150-450.I have 9. I have red spots all over me and
 big, purple bruises from anywhere I am touched.
 I have traveled in India 3 times. In which part of India do you live?
 Angie

  --
  *From:* Gopalsamy Ragavan graga...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Tuesday, May 19, 2015 8:15 AM
 *Subject:* Re: [CMLHope] Platelets

 I am in India. I have given the method below.

 You can prepare it very easily. Or you can drink two spoons of papaya
 leaf extract in the morning.

 Procedure:
 Dry papaya leaves completely.
 Add cumin seeds and little black pepper and powder the dried papaya
 leaves.
 Keep it safe in a container.

 Add water to spoon full of papaya leaf powder and boil it.
 Filter it and drink warm.

 regards,
 Ragavan






 On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS esd...@rogers.com
 wrote:

 Thank you very much for your reply.
 I will try to find papaya leaf tea.
 I am in Canada...where are you?
 Angie

  --
  *From:* Gopalsamy Ragavan graga...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Sunday, May 17, 2015 7:08 AM
 *Subject:* Re: [CMLHope] Platelets

 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
  --
 --
 [CMLHope]
 A support group of 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

Re: [CMLHope] Platelets

2015-05-24 Thread Marty Gartenberg

Hi Again Angie,

Now it makes sense, so you are also blessed (yea right) with Lupus. Yes
that makes things more interesting. However you are also fighting your way
through it and I take my Zavies zero number one hat off to you. I hope that
you know what I'm talking about.

Anyway I don't necessarily recommend  papaya tea extract but you already
ordered it so you can start off with that, but I just sent you a site from
Puritans Pride with a lot of information. Please read it.

18's,

Marty

Thanks, Marty. I have ordered organic papaya leaf tea and will mix it as
Ragavan suggests. My excitement for this week was a silent heart attack.
I missed it. Felt nothing at all. Felt great all week. A blood test
revealed a high level of
Troponins in my blood and they got all excited and kept me in hospital for
3 days doing various tests. I will learn the results this week. I see a
platelet specialist tomorrow. Maybe he will have more words of wisdom. I
am  really happy to hear that you recommend papaya tea also and that it
works. I had 9 platelets on Friday  (normal level 150-450) and my hemoglobin
had dropped into the low 80's. This seems to be an ongoing battle as my
lupus tries to kill my body one cell at a time.
Wishing all the best to you! 18's~
Angie

On Sun, May 24, 2015 at 8:43 AM, ANGELYN ESDERS esd...@rogers.com wrote:

 Thanks, Marty. I have ordered organic papaya leaf tea and will mix it as
 Ragavan suggests. My excitement for this week was a silent heart attack.
 I missed it. Felt nothing at all. Felt great all week. A blood test
 revealed a high level of
 Troponins in my blood and they got all excited and kept me in hospital for
 3 days doing various tests. I will learn the results this week. I see a
 platelet specialist tomorrow. Maybe he will have more words of wisdom. I
 am  really happy to hear that you recommend papaya tea also and that it
 works. I had 9 platelets on Friday  (normal level 150-450) and my hemoglobin
 had dropped into the low 80's. This seems to be an ongoing battle as my
 lupus tries to kill my body one cell at a time.
 Wishing all the best to you! 18's~
 Angie
   --
  *From:* Marty Gartenberg wa2...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Sunday, May 24, 2015 8:24 AM
 *Subject:* Re: [CMLHope] Platelets

 Hi Angie,

 Please read this about the effects to not only your platelet counts but
 also your red cell count. Ragavan gave you some valuable advice but you
 need to find the best supplement that contains the best form of Papya leaf
 extract. By the way when I had my bone marrow transplant one of my friends
 got me some of it and it did work.

 Let me do some research and get back to you. In the meantime you must be
 extremely careful not to injure your self. don't walk around barefoot or
 even use slippers. It will not offer any protection if you should stub one
 of your toes. I know all about that because it happened to me.

 OK on to some research. By the way I am slowly starting to recover from
 the Staff infection in my lungs. I have a picc line and wear an infusion
 pump 24/7 for the next few weeks.

 I will get back to you

 18's,

 Marty

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757281/



 On Sat, May 23, 2015 at 10:07 PM, ANGELYN ESDERS esd...@rogers.com
 wrote:

 Thank you very much, Ragavan, for your suggestion.
 I immediately ordered some organic papaya leaf tea and I am awaiting its
 arrival.
 I can't wait to try it as my platelets are still so very low in number.
 Minimum level is 150-450.I have 9. I have red spots all over me and
 big, purple bruises from anywhere I am touched.
 I have traveled in India 3 times. In which part of India do you live?
 Angie

  --
  *From:* Gopalsamy Ragavan graga...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Tuesday, May 19, 2015 8:15 AM
 *Subject:* Re: [CMLHope] Platelets

 I am in India. I have given the method below.

 You can prepare it very easily. Or you can drink two spoons of papaya leaf
 extract in the morning.

 Procedure:
 Dry papaya leaves completely.
 Add cumin seeds and little black pepper and powder the dried papaya leaves.
 Keep it safe in a container.

 Add water to spoon full of papaya leaf powder and boil it.
 Filter it and drink warm.

 regards,
 Ragavan






 On Sun, May 17, 2015 at 6:33 PM, ANGELYN ESDERS esd...@rogers.com wrote:

 Thank you very much for your reply.
 I will try to find papaya leaf tea.
 I am in Canada...where are you?
 Angie

  --
  *From:* Gopalsamy Ragavan graga...@gmail.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Sunday, May 17, 2015 7:08 AM
 *Subject:* Re: [CMLHope] Platelets

 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

Re: [CMLHope] Today's

2015-05-24 Thread Marty Gartenberg

Hi Beth,

First Shelly and I would like to thank you for your birthday wishes. Now
for a couple of corrections. Yes I do try to kick azz but I don't do any
pushups on the commode, there are only two things that I use the commode
for. Up until recently it was only one thing but since my kidney transplant
and TURP operation I am happy to report that I now can do both of those
things on the commode[?]

How I do my pushups is by holding the edge of my kitchen sink countertop so
as not to fall and use my arms to do those pushups using an up and down
motion. When I'm feeling good  i can usually can do up to 50, then later on
another 50.

As far as that number 3500, that is how high I can get using that plastic
machine i believe is called a spirometer. It is where you put the end of
the tube in your mouth and suck inward and the float inside starts to
rise. I can do it for about 10 times consecutive, some times I can get it
up to 3500 and sometimes just a bit lower to about 3000.

Anyway my wife is not so sweet if these doctors or hospital try to mess
with me or her, but I think that I have already mentioned it to everyone.
If not then let me know and I will send it out that story once again.

The one thing that I have learned in our almost 40 years of marriage is to
never, and I mean never call her Rachel. Her name is Rochelle, so I call
her Shelly. When ever anyone calls her Rachel she is always ready to
correct them and makes a point of it.[?]

Now I have learned from her whenever someone calls me Marin instead of
Martin which is a sign of having a lazy tongue or a lack of attention on
their part.

Good luck to Richard on his upcoming test

Beth, I am very sorry to hear what happened to your dog I hope that it is
finally able to recover and is comfortably able to rest. I am an animal
lover and when I rescued my current dog from the pound just a day before
she was going to be put down I made a pact with her that I always do with
any of my previous dogs. As I was petting her I told her that no matter
what she did that I would never hit her, and she has to respect me and my
family and never bite any of us. So far it has been more then 8 years and
our pact is still in order.

18's,

Marty

Happy Birthday to Marty and your sweet wife.
You do kick a...and you are our hero..inspiration and all around nice
guy. :)

Great news from Richard too!!

I will do BCR abl in a couple weeks and let the group know how I am..

Rough week...Monday I was walking my dog and she got attacked by a very
large dog.., picked up three feet in the air and shaken...so we have been
in the dog ICU since Monday...tried to take her home, 12 hour later back in
the ICU, complications, abyses, etc..drains, surgery to remove dead
tissuebut she is amazing...when I brought her home..today...( tomorrow
she goes in for a new drain because the old one did not work properly..)
she looked at the stairs and one at a time...very slowly...
she went up to her favorite place to lay down...it's like Marty doing push
ups on the commode, ..and by the way 3500 .I don't know anyone who can
do that number at any age Marty..so you are amazing...

anyway...we are taking it one day at at time..but making progress towards
healing...each and everyone of us.
Love and 18's to all, Beth

On Sun, May 24, 2015 at 9:00 PM, bkbarney via CMLHope 
cmlhope@googlegroups.com wrote:

 Happy Birthday to Marty and your sweet wife.
 You do kick a...and you are our hero..inspiration and all around nice
 guy. :)

  Great news from Richard too!!

  I will do BCR abl in a couple weeks and let the group know how I am..

  Rough week...Monday I was walking my dog and she got attacked by a very
 large dog.., picked up three feet in the air and shaken...so we have been
 in the dog ICU since Monday...tried to take her home, 12 hour later back in
 the ICU, complications, abyses, etc..drains, surgery to remove dead
 tissuebut she is amazing...when I brought her home..today...( tomorrow
 she goes in for a new drain because the old one did not work properly..)
 she looked at the stairs and one at a time...very slowly...
 she went up to her favorite place to lay down...it's like Marty doing push
 ups on the commode, ..and by the way 3500 .I don't know anyone who can
 do that number at any age Marty..so you are amazing...

  anyway...we are taking it one day at at time..but making progress
 towards healing...each and everyone of us.
 Love and 18's to all, Beth


 -Original Message-
 From: Richard H rbhuffm...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Thu, May 21, 2015 11:01 pm
 Subject: Re: [CMLHope] Today's

   Yeah, Marty!  Another challenge another kick AZZ success.  Happy
 Birthday to you (2x) and your wife.  I know you are soaking up that
 beautiful View from you picture window and that is charging your energy
 level beyond belief.

  Richard H.

 On Thursday, May 21, 2015 at 5:59:59 AM UTC-5, wa2yyx wrote:

  Hi Susan and everyone else.

Re: [CMLHope] Today's

2015-05-21 Thread Marty Gartenberg

Hi Greenie,

I keep on saying that your mind is also a part of this process. You need to
learn how and when to take control of your mind. Please remember something.
When your upset or have any anxiety in your life then it effects your
endorphin levels in your brain. The less of this hormone the worse you may
feel. endorphin is something that per motes  your healing process.

I am not making this up, read it for yourself, and as you can see it works
for me.

 http://www.medicinenet.com/script/main/art.asp?articlekey=55001

Exercise and depression and endorphins

http://www.webmd.com/depression/guide/exercise-depression

Now you know why I don't let myself become depressed.

So, now that you know, exactly what are you going to do about it?

You already know what I feel and do, so maybe a little kick in the butt
will get you started.

Just do it! one thing though once you start doing some exercise especially
walking and try to double what you did the first day. You will notice a
euphoric feeling because you know that your able to do it.

Even with all of the problems I am having I still get off my AZZ and walk
down the hallways of the hospital and after that I do some modified push
up's. It is really easy. Just stand in front of your sink to make sure that
you won't fall then put both of your hands at the edge of the counter
top spread your feet a little then start doing those push up's. Make your
arms be able to lift your body away from the sink then toward the sink.
Start off doing ten then double that the next time. I am now up to over 100
push up's but I don't think that I will increase it because my heart
monitor goes crazy so I just rest and my blood pressure simply drops.

This is part of my secret for staying the way I am. So if I can do it then
why can't you? Please start off slowly and just continue on. If it does
work then I would like to know and so would everyone else. You just bite
that bullet and spit out the lead.

Remember I am not a super being but I found a way to use my mind to help my
body.

Look, I have spent the better part of two hours writing this at least try
it and see what happens to you.

18's,

Marty

On Thu, May 21, 2015 at 10:47 AM, Myvety2k via CMLHope 
cmlhope@googlegroups.com wrote:

  Marty, I am so happy for you, But could you please me some of your kick
 a$$ attitude so when I have one of my bad day's I can go back and read your
 emails. Thank you my CML friend.

 greenie

  In a message dated 5/21/2015 7:00:01 A.M. Eastern Daylight Time,
 wa2...@gmail.com writes:

  Hi Susan and everyone else.

 Well another hospital stay but I just got home yesterday. This time it was
 phenomena so I was started on an iv antibiotic which I will have with me
 for about two more weeks. Anyway it was my goal to celebrate my wife's
 birthday which was on May 20th and mine is actually today and also my
 second birthday of my bone marrow transplant back in May 21st 1989.

 So I just put my golden attitude hat on (Zavie Millers zero club number
 one is what he personally assigned to me in my home a very long time ago.

 So what happened? I got my AZZ right out of bed with my IV pole and got
 out of my room and started walking. I walked three times a day up  and down
 the hallways of my ward. Once I got back to my room I rested then grabbed
 onto the sinks counter top and did some modified push up's. I kept on using
 that plastic breathing machine to suck air into my lungs so that I was able
 to cough up whatever was in my lungs I was finally able to make the float
 reach 3,500 and do it for ten consecutive times in a row.

 One of my doctors was standing right there and he said that he couldn't
 even do that himself.
 Well I did all of this for a week and I was finally discharged but with a
 picc line and a portable antibiotic pump that I am able to carry around
 with me. I have a home care nurse that changes the IV bag every other day
 or so.

 Today is some of my doctor appointments as well as my blood work. Man am I
 happy about that picc line no more needle holes all over my black and blue
 arms [?]

 Listen folks please don't consider me to be a super hero but someone that
 has a kick AZZ healing attitude, and as long as I am alive it will always
 be with me.

 I told all of you this story so that you will realize that you can help
 yourself by having this kind of attitude. This is what I did when I used to
 live in that small plastic bubble (luminous Air Flow Chamber, and I will
 never forgot how it helped me. Not the chamber but my attitude.

 I beg each one of you to try and do what I did because it works for me and
 with a little effort it can for you. Just start very slowly and let your
 mind control your body. Remember what I once told you, Leukemia is a
 disease of not only the body but the mind as we..

 8's,

 Marty

 On Wed, May 20, 2015 at 4:28 PM, rszim0702 via CMLHope 
 cmlhope@googlegroups.com wrote:

 Guess you and I are kind of on the same track.both were off

Re: [CMLHope] Today's report for Marty

2015-05-21 Thread Marty Gartenberg

Hi Susan Zimmerman.[?]
I guess that it must be spelled Pneumonia like liquid in your lungs. Thank
you for the birthday wishes, and my wife's birthdate was just yesterday.
Ok Susan, just a couple of things. I sure have heard of the spanking
machine. Your talking about my wife Shelly, she hurts me so good, YEA!
Maybe more tonight [?] After we eat our carvel ice cream cake. By the way
any time that you would like to see my AZZ just come on over, but you
should know that 70 year old men opps I almost forgot I'm 71 today have no
azzes. Maybe after all of this is done and over I can get reverse
liposuction? What do you think?

So your living your life to the fullest and that is exactly what you and
every one else should do

Susan, I wish you a wonderful vacation. You really deserve it. Kick Azz
susan kick azz but please not mine there is no meat on it.

And a very very good18's to you

Marty

Hey Marty, hi!!!
I know everyone is delighted to hear from you.  Did you have phenomena or
pneumonia?  most of the same lettersI figured it out!

HAPPY BIRTHDAY SWEET MARTY from all of us!  Have you heard of the spanking
machine?  I'd put you through it if I could see you, as your AZZ could be
further stimulated in this way. That is acceptable on birthdays if you are
under 12 years old.  You qualify, don't you?   After all those exercises,
we are all very proud of you!!!  Hope your wife was thrilled with her
birthday and that today YOU are treated like a king.  After all those doc
appts. I hope you get to celebrate big!

So great to hear from you, but I must get ready for vacation!  Living life
to the fullest and wishing that for all of you, too!

18's and blessings on your birthday,
Susan F. Zimmerman

On Thu, May 21, 2015 at 12:54 PM, rszim0702 via CMLHope 
cmlhope@googlegroups.com wrote:


  Hey Marty, hi!!!
 I know everyone is delighted to hear from you.  Did you have phenomena or
 pneumonia?  most of the same lettersI figured it out!

  HAPPY BIRTHDAY SWEET MARTY from all of us!  Have you heard of the
 spanking machine?  I'd put you through it if I could see you, as your AZZ
 could be further stimulated in this way. That is acceptable on birthdays if
 you are under 12 years old.  You qualify, don't you?   After all those
 exercises, we are all very proud of you!!!  Hope your wife was thrilled
 with her birthday and that today YOU are treated like a king.  After all
 those doc appts. I hope you get to celebrate big!

  So great to hear from you, but I must get ready for vacation!  Living
 life to the fullest and wishing that for all of you, too!

 18's and blessings on your birthday,
 Susan F. Zimmerman


 -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Thu, May 21, 2015 6:59 am
 Subject: Re: [CMLHope] Today's

   Hi Susan and everyone else.

  Well another hospital stay but I just got home yesterday. This time it
 was phenomena so I was started on an iv antibiotic which I will have with
 me for about two more weeks. Anyway it was my goal to celebrate my wife's
 birthday which was on May 20th and mine is actually today and also my
 second birthday of my bone marrow transplant back in May 21st 1989.

  So I just put my golden attitude hat on (Zavie Millers zero club number
 one is what he personally assigned to me in my home a very long time ago.

  So what happened? I got my AZZ right out of bed with my IV pole and got
 out of my room and started walking. I walked three times a day up  and down
 the hallways of my ward. Once I got back to my room I rested then grabbed
 onto the sinks counter top and did some modified push up's. I kept on using
 that plastic breathing machine to suck air into my lungs so that I was able
 to cough up whatever was in my lungs I was finally able to make the float
 reach 3,500 and do it for ten consecutive times in a row.

  One of my doctors was standing right there and he said that he couldn't
 even do that himself.
  Well I did all of this for a week and I was finally discharged but with a
 picc line and a portable antibiotic pump that I am able to carry around
 with me. I have a home care nurse that changes the IV bag every other day
 or so.

  Today is some of my doctor appointments as well as my blood work. Man am
 I happy about that picc line no more needle holes all over my black and
 blue arms

  Listen folks please don't consider me to be a super hero but someone
 that has a kick AZZ healing attitude, and as long as I am alive it will
 always be with me.

  I told all of you this story so that you will realize that you can help
 yourself by having this kind of attitude. This is what I did when I used to
 live in that small plastic bubble (luminous Air Flow Chamber, and I will
 never forgot how it helped me. Not the chamber but my attitude.

  I beg each one of you to try and do what I did because it works for me
 and with a little effort it can for you. Just start very slowly and let
 your mind control your

Re: [CMLHope] Today's

2015-05-21 Thread Marty Gartenberg

Hi Susan and everyone else.

Well another hospital stay but I just got home yesterday. This time it was
phenomena so I was started on an iv antibiotic which I will have with me
for about two more weeks. Anyway it was my goal to celebrate my wife's
birthday which was on May 20th and mine is actually today and also my
second birthday of my bone marrow transplant back in May 21st 1989.

So I just put my golden attitude hat on (Zavie Millers zero club number one
is what he personally assigned to me in my home a very long time ago.

So what happened? I got my AZZ right out of bed with my IV pole and got out
of my room and started walking. I walked three times a day up  and down the
hallways of my ward. Once I got back to my room I rested then grabbed
onto the sinks counter top and did some modified push up's. I kept on using
that plastic breathing machine to suck air into my lungs so that I was able
to cough up whatever was in my lungs I was finally able to make the float
reach 3,500 and do it for ten consecutive times in a row.

One of my doctors was standing right there and he said that he couldn't
even do that himself.
Well I did all of this for a week and I was finally discharged but with a
picc line and a portable antibiotic pump that I am able to carry around
with me. I have a home care nurse that changes the IV bag every other day
or so.

Today is some of my doctor appointments as well as my blood work. Man am I
happy about that picc line no more needle holes all over my black and blue
arms [?]

Listen folks please don't consider me to be a super hero but someone that
has a kick AZZ healing attitude, and as long as I am alive it will always
be with me.

I told all of you this story so that you will realize that you can help
yourself by having this kind of attitude. This is what I did when I used to
live in that small plastic bubble (luminous Air Flow Chamber, and I will
never forgot how it helped me. Not the chamber but my attitude.

I beg each one of you to try and do what I did because it works for me and
with a little effort it can for you. Just start very slowly and let your
mind control your body. Remember what I once told you, Leukemia is a
disease of not only the body but the mind as we..

8's,

Marty

On Wed, May 20, 2015 at 4:28 PM, rszim0702 via CMLHope 
cmlhope@googlegroups.com wrote:

 Guess you and I are kind of on the same track.both were off everything
 for quite some time, now my number is .01%, near 0and you are, too!
 Every day is a gift.  We will be on vacay next week in Virginia, but I will
 catch up to your results sometime after Tuesday!
 Going to the Shenandoah Mountains for some R  R for my stressed-out
 husband.  Best wishes!
 18's,
 Susan F. Zimmerman


 -Original Message-
 From: Richard H rbhuffm...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Tue, May 19, 2015 11:59 pm
 Subject: Re: [CMLHope] Today's CBC

   Thanks!  But after a 15-17 log reduction three months ago I only had a
 1.795% left to go to zero..  I am expecting the best.  I had a phone call
 from ONC's nurse after my ONC finished reviewing some o my tests.  She said
 I was to told to call you and tell you all He can say is They are
 AWESOME!'.  I will post the actual next week after Tuesday.

  Richard H.

 On Sunday, May 17, 2015 at 8:17:13 PM UTC-5, rszi...@aol.com wrote:

 Yay, Richard!!!  I'm also expecting your BCR/ABL to show you are much
 lower than the last time!  Let us know!

  18's,
  Susan

  -Original Message-
 From: Richard H  rbhuf...@gmail.com
 To: cmlhope  cml...@googlegroups.com
 Sent: Fri, May 15, 2015 6:46 pm
 Subject: [CMLHope] Today's CBC

today's HEM was 10.4 up from 8.7 last week.  Yeah!!! It was in the
 acceptable range. Drs. disagree when to take my last shot, one prefers not
 to have a shot when the HBM is above 10.  However both agree that if the
 HEM is above 11 a shot can do more harm than good.  I took the shot today,
 but if all continues as the last 2 weeks, this will be my last one for
 sometime.  Yeah!! It is entirely possible that I will achieve the normal
 range for the first time since 2002 for sure.
  I had my blood drawn for my ABL-BCR test.  I will get the results on
 Monday the 26th.

  Richard H.



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Re: [CMLHope] Some bad news

2015-05-09 Thread Marty Gartenberg

Thank you greenie I just have to do what I have to do. It is only a bump in
the road but a very painful bump but I just ride it out. There are no other
choices

18's

Marty

On Sat, May 9, 2015 at 3:31 PM, Myvety2k via CMLHope 
cmlhope@googlegroups.com wrote:

  Marty, you are one son of a gun, I don't know if I would be capable of
 going through what you have gone through.  Bless you,  :)

 greenie

  In a message dated 5/9/2015 11:07:23 A.M. Eastern Daylight Time,
 wa2...@gmail.com writes:

   As you already know I was discharged from the hospital yesterday with
 the catheter removed. When I got home I was able to urinate but only a
 little at a time. Later on in the evening I couldn't urinate at all and the
 pain was getting very bad I had no other choice  to go to the Bethesda west
 hospital and thank GOD that they don't have many patients there at that
 time of the night. I was shaking in pain so they took me in right away.
 I was screaming in such pain and asked them to put in another catheter and
 it was very painful but as soon as they put it in out came a river of
 bright blood and urine but I had instant relief. They did some blood work
 and thank god it didn't harm my kidney.

 When we got back home it was after 1:30 am and I emailed my doctor letting
 him know what was going on, and I also called and spoke with him and he
 told me to do nothing and leave the catheter in and come see him on Monday
 morning and I shouldn't worry because he will take care of the problem.
 As you already know about me is that I always have a positive attitude and
 this will eventually all work out

 18's,

 Marty

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[CMLHope] Some bad news

2015-05-09 Thread Marty Gartenberg

 As you already know I was discharged from the hospital yesterday with the
catheter removed. When I got home I was able to urinate but only a little
at a time. Later on in the evening I couldn't urinate at all and the pain
was getting very bad I had no other choice  to go to the Bethesda west
hospital and thank GOD that they don't have many patients there at that
time of the night. I was shaking in pain so they took me in right away.
I was screaming in such pain and asked them to put in another catheter and
it was very painful but as soon as they put it in out came a river of
bright blood and urine but I had instant relief. They did some blood work
and thank god it didn't harm my kidney.

When we got back home it was after 1:30 am and I emailed my doctor letting
him know what was going on, and I also called and spoke with him and he
told me to do nothing and leave the catheter in and come see him on Monday
morning and I shouldn't worry because he will take care of the problem.
As you already know about me is that I always have a positive attitude and
this will eventually all work out

18's,

Marty

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Re: [CMLHope] Re: Questions

2015-05-06 Thread Marty Gartenberg

Richard,

That's what we are all here, to share our knowledge and experiences.

Anyway, I go into the hospital again tomorrow afternoon to have my prostate
operation. If everything goes ok then this horrible catheter will finally
come out after more then ten weeks. It gave me a uti and I am on Cipro and
it seems to have cleared up but I still have to take it for another week.
By the way there will be another catheter put in to make sure all of the
blood and debris are drained out but for only a day or so.
Wish me good luck...

18's,

Marty

On Wed, May 6, 2015 at 1:13 AM, Richard H rbhuffm...@gmail.com wrote:

 Yes, the cost of Gleevec has tripled since my first dose in 2002.  But,
 everything else in my part of the world.  Like Marti, if we didn't
 have Gleevec or six or seven other choices we would not have a chance to
 say,  I will probably did of something else.  When I went off Gleevec Nov.
 2006 because of the side effects the only major study (25 people in
 England) most had returned to Gleevec in 2 years. I did lose the coveted
 non detected in about 3 years, but I decided because of the CML groups
 with the positive thinkers to see how far I could go. Well, I made it 6 1/2
 years before those counts started a steady climb and was asked to please
 return to Gleevec.  The statics I am seeing are still claiming only about
 5000 people are diagnosed each year.  I would dare suggest that .the
 increased new people you are seeing is due to increased awareness of our
 band of CMLers that are willing to share our experience.  Our CMLers that
 precipitate in  the doctors conferences letting them know we welcome those
 newcomers to ask about our experiences.  When I respond to someone it is
 always my personal story and what I have learned, at that point I can only
 hope another CMler will share their story.

 Richard H.


 On Tuesday, May 5, 2015 at 10:35:31 AM UTC-5, Suzieq wrote:

 Hello there fellow CML Survivors:

  My 1st question: Does anyone know about the patent on Gleevec and if
 it's about to expire?  I was thinking it had up till this month,  or the
 last time I saw the information on it, I thought their extension ended
 sometime in May of 2015.  I don't remember where it was that we could go
 and look at that information.   I told my husband that I thought for sure
 the price would drop on Gleevec by now,  but from what I've seen from some
 new cases,  it looks as if it's increased in price.  Course,  I didn't see
 the quantity that the price was for,  that could make a difference, I'm
 sure.

 2nd question: How many TKI's are there now for CML (approved and also
 those in trials)?  There are two groups I am in on Facebook and so many new
 cases being dx'ed every day that it's just unreal.  I get upset with some
 of the CML Survivors in these groups and what they will tell these newly
 dx'ed people who seem scared to death  looking for good information.  I
 even talked to my doctor about some of this stuff that they are saying.
 One told a new dx'ed person that his doctor told him when he was first
 dx'ed,  well, will put you on this drug (didn't specify which one) and you
 will take it every day. This and this will happen and you'll be cured
 within a year.  I about came unglued when I read that.  And,  I made sure
 in my comment to this newly dx'ed person when I was trying to uplift her
 and give her advice of what I went through and what helped me over the past
 11 years that I would be very leary of any doctor who told me that I would
 be cured in a year!  Infact, I would be finding another Hem./Onc
 quickly.  I told her that as far as I knew,  there still is no cure for CML
 that they know of. That these drugs are too new and not enough research to
 let them know if it might be a cure one day.  I told her that you can
 become undetected or non detected after being on the TKI's after some
 time.  I told her that I call it a drug induced remission (those are my
 words, not a doctors, lol).  There are these so called experts who have
 CML and looked at all the info and try and tell the new ones that there's
 studies going on and some seemed to be cured. (that's false information)
  My doctor told me (and I have read the info, too) that the one study that
 was done in England, I believe it was, had several go off their Gleevec.
 Within a year's time, 50% had their CML return.  I'm thinking that
 discussion I had with her (doctor) was about 2  1/2 years ago when I asked
 to lower my Gleevec dosage.

 I always mention this group to those in the groups on FaceBook.  I tell
 them that after I was dx'ed in January 2004  started Gleevec soon there
 after,  I thought I was going to die because of the awful side effects.  I
 said that I spent most of my time lying on my living room sofa or before
 the throne in the bathroom.  After about 4 months of this,  I accidently
 run upon this group(CML Hope) on line and it is what saved me.  Back
 then,  I think Gleevec was the only drug at the time besides

Re: [CMLHope] My article re: CML

2015-05-05 Thread Marty Gartenberg

I'm glad that your doing so well. Keep up the terrific work.

Yes, I'm doing better each day. However I will be going into the hospital
this coming Thursday for some surgery to my prostate. Thank GOD not for
cancer but for making my enlarged prostate able to pass urine without this
horrible catheter.

18's,

Marty

On Tue, May 5, 2015 at 3:12 PM, rszim0702 via CMLHope 
cmlhope@googlegroups.com wrote:

 Thank you for the cheers and hug, Marty!!!  I can't do that, with those
 picsit's so neat!

  I always use 18's, as I am all for life for all of us!!!  Praying you
 are doing better each day.

 18's,
 Susan F. Zimmerman


 -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Tue, May 5, 2015 2:56 pm
 Subject: Re: [CMLHope] My article re: CML

   Well, well well Susan Zimmerman   .01  Hugs,

  I also notice that you use 18's as well. Good!

  18's right back at you

  Marty

  On Tue, May 5, 2015 at 2:17 PM, rszim0702 via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hello Vic,

  I finally got tested again (bcr/abl) which showed my number as .01!!!
 Almost undetectable with 100  mg a day of bosulif.  I am doing great with
 that but just recovered from a bad bronchitis.  Also discovered yesterday
 the reason I felt like staying in bed 24/7 was because my blood pressure
 was too low!  So skipping last night's dose did miracles for me today!!!
 Taught my Bible study this morning and feel great!  Two more times and
 we'll be done with Search for Significance.  Hopefully the ladies I'm
 teaching are learning how valuable they are!  It seems like a slow process
 with this group.  I just plant, and do a little watering, and let Him do
 the rest.  We can choose to be victorious or choose to stay down in the
 dumps.  I choose life!

  Have a great week and until next time.be blessed!
 18's,

  Susan F. Zimmerman


  -Original Message-
 From: Victoria Reiter  vkrei...@gmail.com
 To: cmlhope  cmlhope@googlegroups.com
 Sent: Tue, May 5, 2015 11:43 am
 Subject: Re: [CMLHope] My article re: CML

   I do thank you for your feedback and am truly glad you liked the
 article, and responded.
 I'm much better, getting on with my life, writing, working,
 traveling..all the things I did before.  The only caveats are the on-going
 side-effects that I've learned to live with (more or less) and having to
 pay attention to what I do, how I do it and what may arise.  And being
 punctilious about taking the Gleevec, and then the visits to the oncologist
 which are now down to twice a year.  As I grow older, other things are
 beginning to be bothersome but I suppose that's so completely normal, I
 shouldn't be surprised.  And how are YOU doing?

  On Fri, May 1, 2015 at 4:49 PM, rszim0702 via CMLHope 
 cmlhope@googlegroups.com wrote:

 I enjoyed the story, Vivi!  So much of the gleevec story paralleled mine
 with the side effects.  Very interesting to read about your dancing
 classes, etc.

  May all your dreams come true as you continue your journey to live a
 life well.
  Blessings,
  Susan F. Zimmerman



  -Original Message-
 From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Fri, May 1, 2015 3:02 pm
 Subject: Re: [CMLHope] My article re: CML

Great story vivi and good job!!  A cml friend of mine, Norman --are
 you there Norman?  Went through those first gleevec trials. I myself
 suffered through the Gleevec for 5 years before I developed a mutant.  We
 know exactly what you are talking about. How are you now?

  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

 On May 1, 2015, at 9:17 AM, Vivi  vkrei...@gmail.com wrote:

   Eclectica.org, an on-line literary magazine, is featuring my article
 about how I learned I have CML, the early treatment that was a failure,
 starting to take Gleevec, its results and how I managed to regain strength
 and stamina once the CML was under control.
 If any CMLer reads the article, I'd love to have some feedback.

   --
 --
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 A support group of http://cmlhope.com
 -

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 Groups CMLHope group.
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 You received

Re: [CMLHope] My article re: CML

2015-05-05 Thread Marty Gartenberg

Well, well well Susan Zimmerman   .01 [?] Hugs,

I also notice that you use 18's as well. Good!

18's right back at you

Marty

On Tue, May 5, 2015 at 2:17 PM, rszim0702 via CMLHope 
cmlhope@googlegroups.com wrote:

 Hello Vic,

  I finally got tested again (bcr/abl) which showed my number as .01!!!
 Almost undetectable with 100  mg a day of bosulif.  I am doing great with
 that but just recovered from a bad bronchitis.  Also discovered yesterday
 the reason I felt like staying in bed 24/7 was because my blood pressure
 was too low!  So skipping last night's dose did miracles for me today!!!
 Taught my Bible study this morning and feel great!  Two more times and
 we'll be done with Search for Significance.  Hopefully the ladies I'm
 teaching are learning how valuable they are!  It seems like a slow process
 with this group.  I just plant, and do a little watering, and let Him do
 the rest.  We can choose to be victorious or choose to stay down in the
 dumps.  I choose life!

  Have a great week and until next time.be blessed!
 18's,

 Susan F. Zimmerman


 -Original Message-
 From: Victoria Reiter vkrei...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Tue, May 5, 2015 11:43 am
 Subject: Re: [CMLHope] My article re: CML

   I do thank you for your feedback and am truly glad you liked the
 article, and responded.
 I'm much better, getting on with my life, writing, working, traveling..all
 the things I did before.  The only caveats are the on-going side-effects
 that I've learned to live with (more or less) and having to pay attention
 to what I do, how I do it and what may arise.  And being punctilious about
 taking the Gleevec, and then the visits to the oncologist which are now
 down to twice a year.  As I grow older, other things are beginning to be
 bothersome but I suppose that's so completely normal, I shouldn't be
 surprised.  And how are YOU doing?

  On Fri, May 1, 2015 at 4:49 PM, rszim0702 via CMLHope 
 cmlhope@googlegroups.com wrote:

 I enjoyed the story, Vivi!  So much of the gleevec story paralleled mine
 with the side effects.  Very interesting to read about your dancing
 classes, etc.

  May all your dreams come true as you continue your journey to live a
 life well.
  Blessings,
  Susan F. Zimmerman



  -Original Message-
 From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Fri, May 1, 2015 3:02 pm
 Subject: Re: [CMLHope] My article re: CML

Great story vivi and good job!!  A cml friend of mine, Norman --are
 you there Norman?  Went through those first gleevec trials. I myself
 suffered through the Gleevec for 5 years before I developed a mutant.  We
 know exactly what you are talking about. How are you now?

  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

 On May 1, 2015, at 9:17 AM, Vivi  vkrei...@gmail.com wrote:

   Eclectica.org, an on-line literary magazine, is featuring my article
 about how I learned I have CML, the early treatment that was a failure,
 starting to take Gleevec, its results and how I managed to regain strength
 and stamina once the CML was under control.
 If any CMLer reads the article, I'd love to have some feedback.

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

 You received this message because you are subscribed to the Google Groups
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Re: [CMLHope] Questions

2015-05-05 Thread Marty Gartenberg

HI Suzieq

From my understanding The first patent for Gleevec expires in July 2015.
This is the earliest predictable date that a generic version could become
available. However this will probably be something that Novartis will fight
and make some minor changes to it and maybe refilled it again. They will
loose a lot of money so you can bet they intend to do something about it,
or maybe they will give everyone a break with the cost of it. Only the
future will tell.

  I read your post and I would like to comment on the second statement that
you made.
First some people just don't know how to speak to people. Even this doctor
that you mentioned. They give false and stupid advice especially to the
newly diagnosed. By saying that she will be cured in one year is observed
and gives false hope.

You are correct about her looking for a new onc that specializes in CML.
However as I have said many times it is my feeling that CML will be cured
in the near future. If so I would love to say, I told you so, and I will!.

Then you made a comment that goes against my grain, and that was that you
thought that you were going to die because of all the side effects. I hope
that you remember me saying that CML poisons your body as well as your
mind.

Your mind is a very powerful tool to be able to help yourself. I would like
for you and everyone to read this.



EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
(MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.

WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
MIND. LEARN TO EXPECT AND NOT 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 MOVES INTO THE AREA OF POSSIBILITY.

EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
SUCCESSFUL OUTCOME...

FOCUS...
How do you think that I was able to have a bone marrow transplant and
living in a small plastic bubble that was in the hospital for seven months?
It is because I was able to use my mind to focus...

Why do you think that I always end any of my posts with 18's? Well, it is
because it means life, and that is positive thinking.

18's,

Marty

On Tue, May 5, 2015 at 11:35 AM, Suzieq sheila.a.wat...@gmail.com wrote:

 Hello there fellow CML Survivors:

  My 1st question: Does anyone know about the patent on Gleevec and if
 it's about to expire?  I was thinking it had up till this month,  or the
 last time I saw the information on it, I thought their extension ended
 sometime in May of 2015.  I don't remember where it was that we could go
 and look at that information.   I told my husband that I thought for sure
 the price would drop on Gleevec by now,  but from what I've seen from some
 new cases,  it looks as if it's increased in price.  Course,  I didn't see
 the quantity that the price was for,  that could make a difference, I'm
 sure.

 2nd question: How many TKI's are there now for CML (approved and also
 those in trials)?  There are two groups I am in on Facebook and so many new
 cases being dx'ed every day that it's just unreal.  I get upset with some
 of the CML Survivors in these groups and what they will tell these newly
 dx'ed people who seem scared to death  looking for good information.  I
 even talked to my doctor about some of this stuff that they are saying.
 One told a new dx'ed person that his doctor told him when he was first
 dx'ed,  well, will put you on this drug (didn't specify which one) and you
 will take it every day. This and this will happen and you'll be cured
 within a year.  I about came unglued when I read that.  And,  I made sure
 in my comment to this newly dx'ed person when I was trying to uplift her
 and give her advice of what I went through and what helped me over the past
 11 years that I would be very leary of any doctor who told me that I would
 be cured in a year!  Infact, I would be finding another Hem./Onc
 quickly.  I told her that as far as I knew,  there still is no cure for CML
 that they know of. That these drugs are too new and not enough research to
 let them know if it might be a cure one day.  I told her that you can
 become undetected or non detected after being on the TKI's after some
 time.  I told her that I call it a drug induced remission (those are my
 words, not a doctors, lol).  There are these so called experts who have
 CML and looked at all the info and try and tell the new ones that there's
 studies going on and some seemed to be cured. (that's false information)
  My doctor told me (and I have read the info, too) that the one study that
 was done in England, I believe it was, had several go off their Gleevec.
 Within a year's time, 50% had their CML return.  I'm thinking

Re: [CMLHope] What is on our outsides can not compare to what is in our insides

2015-05-03 Thread Marty Gartenberg

Hi Susan,

I am just keeping a promise that I once made a very long time ago.

Susan we are all our own hot chocolate.

18's

Marty

On Sun, May 3, 2015 at 9:20 PM, rszim0702 via CMLHope 
cmlhope@googlegroups.com wrote:

 so very true, Marty. An  excellent presentation, thank you as usual!  Keep
 fighting the good fight of faith for your victory!  We are all praying for
 you and with you.

 You make our lives so much richer because YOU are sometimes our HOT
 CHOCOLATE!!!

  Love and 18's,
 Susan F. Zimmerman

  Ask of me, and I will make the nations your inheritance, the ends of
 the earth your possession. Psalm 2:8

 -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: CMLHope CMLHope@googlegroups.com
 Sent: Sun, May 3, 2015 3:11 pm
 Subject: [CMLHope] What is on our outsides can not compare to what is in
 our insides

   Hot Chocolate.

  You will need power point viewer.

  18's

  Marty
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Re: [CMLHope] Today's Update

2015-05-01 Thread Marty Gartenberg

Hi Richard,

And speaking about the 23rd psalm.

FOOTPRINTS IN THE SAND One night I dreamed I was walking along the beach
with the Lord. Many scenes from my life flashed across the sky. In each
scene I noticed footprints in the sand. Sometimes there were two sets of
footprints. Other times there were one set of footprints. This bothered me
because I noticed that during the low periods of my life When I was
suffering from anguish, sorrow, or defeat, I could see only one set of
footprints. So I said to the Lord, You promised me, Lord, That if I
followed you, you would walk with me always. But I noticed that during the
most trying periods of my life There have only been one set of prints in
the sand. Why, When I have needed you most, you have not been there for
me? The Lord replied, The times when you have seen only one set of
footprints Is when I carried you.

18's my friend

Marty

On Fri, May 1, 2015 at 12:32 AM, Richard H rbhuffm...@gmail.com wrote:

 Thank you for your kind words.  I remember those days the real storm
 clouds blotted out the sun and I railed at everything all day just because
 I could not comprehend the glorious bright sunshine, beautiful flowers that
 would flourish because of the rain left behind. I was recently listening to
 a TV sermon before I headed to worship at my church.  The minister/pastor
 sad,  Remember in the 23rd Psalm that God said, Though you walk thru the
 valley of the death, I will be with you and give you comfort.  He did not
 promise carry you or me just help us find our way.  I remember memorizing
 this as a child, but the impact of the words only became important about 6
 decades later.

 18's and may you always look for a silver lining.

 Richard H.


 On Thursday, April 30, 2015 at 4:05:34 PM UTC-5, Beth wrote:


 Dear Richard,

  I am so sorry you wound up in the hospital...but very happy for the
 silver linings that occurredSometimes, on the better days, things work
 out in this way...I too appreciate Marty's positive attitude, as I do
 yours...it's quite contagous, and Jeanie's, and Greenie's, and Susans and
 Suzieque's..and Theresa's and all the rest

  and when you start to feel betterand can see the light, even if you
 are still sitting in some darkness..well it sure does feel good

  love to everyone...prayers and hugs I will write an update
 soon...just not up for it today...

  Beth

 -Original Message-
 From: Richard H rbhuf...@gmail.com
 To: cmlhope cml...@googlegroups.com
 Sent: Thu, Apr 30, 2015 3:48 pm
 Subject: [CMLHope] Today's Update

   I spent 3 days in the hospital this week.  Good news it was not
 necessarily related to CML, but CML was hiding the problems.  1. I had
 developed Vertigo, so we called an ambulance because the world would not
 stop spinning. 2. They also found I had blood leakage in my stomach, so
 that was stopped.  3. They cleaned my stomach, stopped all my meds to
 re-evaluate them.  They discovered that one med was reversed from what I
 needed and was helping to dehydrate me.  Result, my quality of life is
 already much better than it has been in a long time.  I have restarted
 Gleevec and will continue to work on rebuilding my Hemoglobin.
  Marty, thanks for your reminders about keeping that positive attitude.  
 Those
 came at a perfect time for me.
  Marty, good luck on getting the Cather changed out.  I experienced this
 for the first time this hospital stay.  My condolences for having to
 endure it, but aren’t we fortunate it is available to help us through these
 rough times?
  To all – Hip! Hip!  Hooray! For all the successes.  Prayers for all
 that have received not so good news.
  Richard H.
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Re: [CMLHope] Today's Update

2015-04-30 Thread Marty Gartenberg

Richard, I am glad that your feeling better

18's,

Marty

On Thu, Apr 30, 2015 at 4:48 PM, Richard H rbhuffm...@gmail.com wrote:

 I spent 3 days in the hospital this week.  Good news it was not
 necessarily related to CML, but CML was hiding the problems.  1. I had
 developed Vertigo, so we called an ambulance because the world would not
 stop spinning. 2. They also found I had blood leakage in my stomach, so
 that was stopped.  3. They cleaned my stomach, stopped all my meds to
 re-evaluate them.  They discovered that one med was reversed from what I
 needed and was helping to dehydrate me.  Result, my quality of life is
 already much better than it has been in a long time.  I have restarted
 Gleevec and will continue to work on rebuilding my Hemoglobin.

 Marty, thanks for your reminders about keeping that positive attitude.  Those
 came at a perfect time for me.

 Marty, good luck on getting the Cather changed out.  I experienced this
 for the first time this hospital stay.  My condolences for having to
 endure it, but aren’t we fortunate it is available to help us through these
 rough times?

 To all – Hip! Hip!  Hooray! For all the successes.  Prayers for all that
 have received not so good news.

 Richard H.

 --
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[CMLHope] Have a happy everything

2015-04-27 Thread Marty Gartenberg

Hi everyone,


We all go through our trials in life, some more then others but in our
lives there is so much uncertainty that we sometimes loose track of what is
really important. We are all very precious human beings and even though you
may think that the world is coming down on you we must remember that we are
still here.


I would like to wish everyone a happy everything...


18's,


Marty


 Happy Everything.



   May you always know how appreciated you are.
May you never forget what a blessing you've become to a world that could use
more people like you



   May you reap the rewards of kindness

   May your sunshine always shine through

   May love walk by your side.

   May friendship sing in your smile

   May opportunity remember to knock on
   your door and surprise you once in a while

   May your memories be ones that you
   wouldn't trade.

   May your hopes and dreams find ways of coming true. May
You never forget how dearly 1 wish a Happy...'Everything' for you.

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Re: [CMLHope] Jeanie's update

2015-04-25 Thread Marty Gartenberg

Hi Jeanie,

I had the same problem after my kidney transplant. My pulse was beating in
the 145 and sometimes higher. The doctor gave me Cartizem and now my heart
beats are normal but even more my blood pressure is just about perfect.

18's,

Marty

On Sat, Apr 25, 2015 at 6:24 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi every one,
 I hope this Friday finds you guys all keeping the faith and doing well.

 I have been taking ponatinib now for 4 months.  You are supposed to reach
 a good response in 6 months with a 12 month steady response.  My blood is
 almost back to normal but I have had a lot of side effects.

 Rash
 Dry skin. Bad
 Rash
 High blood pressure
 Constipation
 Headaches

 There is a chance of blood clots and heart problems and more.

 The blood pressure meds don't work well with me and I have tried a lot.
 Any suggestions?

 Hang I'm there Marty.  Maybe next year we will both feel like traveling
 the world.

 Prayers  Blessings Jeanie [image: ][image: ]18,s
 Dx 1/2004
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015

 On Mar 10, 2015, at 6:31 AM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  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 contracts it's Doctors and Fellows
 (Doctors in training).  They can access all my records at both offices with
 the new Cerner Medical Systems that are being installed world wide.

 I am anxiously waiting for more news from Marty, and him keeping him my
 prayers.

 Richard H.

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Re: [CMLHope] Jeanie's update

2015-04-25 Thread Marty Gartenberg

Thank you greenie.

18's

Marty

On Sat, Apr 25, 2015 at 9:31 PM, Myvety2k via CMLHope 
cmlhope@googlegroups.com wrote:

  Marty, I'm always glad to here good news from you, it's up lifting.

 greenie

  In a message dated 4/25/2015 7:41:34 P.M. Eastern Daylight Time,
 wa2...@gmail.com writes:

 Hi Jeanie,

 I had the same problem after my kidney transplant. My pulse was beating in
 the 145 and sometimes higher. The doctor gave me Cartizem and now my heart
 beats are normal but even more my blood pressure is just about perfect.

 18's,

 Marty

 On Sat, Apr 25, 2015 at 6:24 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi every one,
 I hope this Friday finds you guys all keeping the faith and doing well.

 I have been taking ponatinib now for 4 months.  You are supposed to reach
 a good response in 6 months with a 12 month steady response.  My blood is
 almost back to normal but I have had a lot of side effects.

 Rash
 Dry skin. Bad
 Rash
 High blood pressure
 Constipation
 Headaches

 There is a chance of blood clots and heart problems and more.

 The blood pressure meds don't work well with me and I have tried a lot.
 Any suggestions?

 Hang I'm there Marty.  Maybe next year we will both feel like traveling
 the world.

 Prayers  Blessings Jeanie [image: Ã°Å¸Â][image: Ã°Å¸Â]18,s
 Dx 1/2004
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015

 On Mar 10, 2015, at 6:31 AM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  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 contracts it's Doctors and Fellows
 (Doctors in training).  They can access all my records at both offices with
 the new Cerner Medical Systems that are being installed world wide.

 I am anxiously waiting for more news from Marty, and him keeping him my
 prayers.

 Richard H.

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 A

[CMLHope] Having a positive attitude

2015-04-24 Thread Marty Gartenberg

I always try to keep a positive attitude and as everyone already knows what
i have already gone through, but i don't complain because i am still here.
And if you look at yourselves and everything that your going through i want
you to remember something. First are those two numbers i always send you at
the end of all of my emails. (Life) We are all still here living.
Next try to remember this when ever you think that things are not going
well for you.
I am not afraid of tomorrow for I have seen yesterday and I love today.
I want you to know that you have all helped me through what i have been
going through and i love each and everyone for this.
18's,
Marty

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Re: [CMLHope] Having a positive attitude

2015-04-24 Thread Marty Gartenberg

Dear Marcie, i always try to remain upbeat because i find that when you
don't it effects your mind in a negative way. Remember that your mind
controls your body. The one thing that does is to produce endorphin in your
brain.

Believe it or not having an abundance of endorphin can relieve pain in some
people. It does for me and just to let you know the pain will still be
there but it won't bother you as much.

I learned this when i had my bone marrow transplant. I severely suffered
from mucositis which are extremely painful mouth sores through your entire
mucous membranes which are the soft tissue in your mouth all the way down
to your rectum

I used to put it out of my mind and although it still hurt it was a
different kind of pain that i was able to tolerate.

Thank you again Marcie.

18's Marty

On Fri, Apr 24, 2015 at 10:44 AM, 'Marcie Goodman' via CMLHope 
cmlhope@googlegroups.com wrote:

 Marty, I am so glad to read your upbeat email. You are a very special man
 and I am thankful that you received your kidney. May God continue to bless
 you and your family

 Marcie

 Sent from my iPad

 On Apr 24, 2015, at 7:54 AM, Marty Gartenberg wa2...@gmail.com wrote:

 I always try to keep a positive attitude and as everyone already knows
 what i have already gone through, but i don't complain because i am still
 here. And if you look at yourselves and everything that your going through
 i want you to remember something. First are those two numbers i always send
 you at the end of all of my emails. (Life) We are all still here living.
 Next try to remember this when ever you think that things are not going
 well for you.
 I am not afraid of tomorrow for I have seen yesterday and I love today.
 I want you to know that you have all helped me through what i have been
 going through and i love each and everyone for this.
 18's,
 Marty

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Re: [CMLHope] Marty's Post on CML2

2015-04-22 Thread Marty Gartenberg

Thank you everyone for your prayers and good wishes. It is difficult for me
now but i am slowly getting back to myself. At least no more dialysis which
is a big relief for me or anyone else that may be going through it.

GOD bless you all

18's,

Marty

On Wed, Apr 22, 2015 at 9:39 AM, 'Susan Zimmerman' via CMLHope 
cmlhope@googlegroups.com wrote:

 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] Marty's Post on CML2

2015-04-21 Thread Marty Gartenberg

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] Marty

2015-04-04 Thread Marty Gartenberg

Thank you Guy. The best of health to you.

18's

Marty

On Thu, Apr 2, 2015 at 8:48 PM, gene and guy Larcher gandglarc...@gmail.com
 wrote:

 Dear Marty,

 Hope you feel a little better each day and that you get good news from the
 docs regarding your transplant.

 The letter you wrote to the donor's family was very warm  and beautiful
 and full of gratitude.  It will be of some solace to them in their loss.

 We are  all rooting for you and hope it won't be too  long before you are
 leading us on again.

 My wife and I send you our very warmest wishes and hope that your recovery
 is going well.

 Guy

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Re: [CMLHope] Re: U[PDATE FOR MARTY

2015-03-30 Thread Marty Gartenberg

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 H rbhuffm...@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 [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 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:

  This was posted to CML2 on YAHOO.

  Hello cml chums!
I have wonderful news from/about our friend Marty!
   Marty left a message at my home sharing that he HAS had his
 transplant (0: is doing well(0: and that he greatly appreciates all of our
 prayers(0: !   (collective sigh of relief from all of us, right?)
Let's continue to send our love, support and prayers to our amazing
 friend.

 (0:  Caryl


 This is great news.  I am now praying for a rapid recovery so he can
 get home soon.

 Richard H.

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Re: [CMLHope] Re: U[PDATE FOR MARTY

2015-03-30 Thread Marty Gartenberg

Please remember that all of you are family to me. Being so we all care for
each other he this all over with.

I would like to share a story concerning a miracle. If you recall me
telling you that if you help someone then it will com back to you

18's

Marty

On Mon, Mar 30, 2015 at 6:16 PM, bkbarney via CMLHope 
cmlhope@googlegroups.com wrote:

 Marty,

  Just rest and recover, stay positive, and believe that with time, things
 will right themselves and your pain will get better.Remember what you
 always say to us, mind over body, try to stay positive, and believe in your
 ability to heal with time. We are here, sending you lots of love, healing,
 warm wishes..wrapping you in a big hug, from all of us to you

  Take good are Marty,

  18's and love, Beth


 -Original Message-
 From: Joyce Mesnarich joy...@htc.net
 To: cmlhope cmlhope@googlegroups.com
 Sent: Mon, Mar 30, 2015 12:01 pm
 Subject: Re: [CMLHope] Re: U[PDATE FOR MARTY

  Oh, Marty, it is so good to hear your voice.  We understand your
 situation and will continue our prayers for you.  Rest and heal.  God bless
 and keep you.

  Joyce in IL


  On Mar 30, 2015, at 7:54 AM, Marty Gartenberg wrote:

  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 H rbhuffm...@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:

  This was posted to CML2 on YAHOO.

   Hello cml chums!
  I have wonderful news from/about our friend Marty!
Marty left a message at my home sharing that he HAS had his
 transplant (0: is doing well(0: and that he greatly appreciates all of our
 prayers(0: !   (collective sigh of relief from all of us, right?)
  Let's continue to send our love, support and prayers to our
 amazing friend.

   ( 0:  Caryl

  This is great news.  I am now praying for a rapid recovery so he can
 get home soon.

   Richard H.


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Re: [CMLHope] Re: U[PDATE FOR MARTY

2015-03-29 Thread Marty Gartenberg

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 
cmlhope@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,
 cmlhope@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 [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s

 On Mar 29, 2015, at 8:37 AM, mariacash...@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:

  This was posted to CML2 on YAHOO.

  Hello cml chums!
I have wonderful news from/about our friend Marty!
   Marty left a message at my home sharing that he HAS had his transplant
 (0: is doing well(0: and that he greatly appreciates all of our prayers(0:
 !   (collective sigh of relief from all of us, right?)
Let's continue to send our love, support and prayers to our amazing
 friend.

 (0:  Caryl


 This is great news.  I am now praying for a rapid recovery so he can get
 home soon.

 Richard H.

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Re: [CMLHope] U[PDATE FOR MARTY

2015-02-28 Thread Marty Gartenberg

Hello to everyone,

Now you all know why I do what I do. I love all of you just as my extended
family. I am so honored and grateful to be a part of your lives, your very
precious lives.

I would like to share with all of you, a letter that I wrote to my kidney
donors family. I would hopefully respect that they have the opportunity of
reading it one day.

18's,

Marty

 *February 28th 2015*

*I write this to the family of the young man that gave of himself in order
that I can survive.*

*It has been four days since I received a kidney transplant from your loved
one. I am in pain right now but I want to write this without any pain
medication because I would like to have a clear mind so that I can speak to
you from my heart and soul.*

*It is very important to me to be able to write this to you, and I truly
hope that you receive it. I hope that it is something that may give you
less hurt in your hearts.*

*First, I would like to send you my deepest condolences on the loss of your
loved one. When I first got the call from the hospital that there was a
matching kidney for me I was very happy. However, I also felt a great deal
of guilt that someone had to be deceased in order for me to receive this
very precious gift of life.*

*I believe that there is a reason for everything that happens in this
world. Sometimes we may not understand what these reasons are, and
sometimes it hurts, but there is a reason for everything.*

*I also believe that if someone does something to try and help someone else
then it will come back to that person. More than twenty five years ago I
had Leukemia and had to go through a bone marrow transplant. In order to do
this I had to have total body radiation and chemotherapy.*

*I remember the first time that I went into the radiation chamber. I got
down on my knees, clasped my hands in front of me and made a promise to
GOD. I prayed that if I were to survive I would go on to try and help
others also go through this.*

*And, this is something that I have done more than one hundred times since.
This is what I meant when I said that if you try to help someone it will
come back to you. This is what your loved one did for me. He has given me
the opportunity to continue on, and even though I do not know his name I
will continue to do this in his name. GOD knows exactly who he is, and I
promise you that I will continue to dedicate my life to your loved one for
giving of him to me.*

*I truly hope that you will eventually receive my letter. Perhaps one of
these days I might have the opportunity of meeting you.*


*Sincerely,*

*Marty*


On Sat, Feb 28, 2015 at 12:31 AM, Richard H rbhuffm...@gmail.com wrote:

 This was posted to CML2 on YAHOO.

 Hello cml chums!
I have wonderful news from/about our friend Marty!
   Marty left a message at my home sharing that he HAS had his transplant
 (0: is doing well(0: and that he greatly appreciates all of our prayers(0:
 !   (collective sigh of relief from all of us, right?)
Let's continue to send our love, support and prayers to our amazing
 friend.

 (0:  Caryl


 This is great news.  I am now praying for a rapid recovery so he can get
 home soon.

 Richard H.

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[CMLHope] Kidney transplant

2015-02-23 Thread Marty Gartenberg

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 Transplant

2015-02-20 Thread Marty Gartenberg

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
emoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.pngemoji_u1f420.png.
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 advancement on the list for kidney transplant Marty God
bless you and I do hope that it happens soon!!!

I am having serious kidney problems myself. Have an appointment with
the nephrologist later this morning...My kidneys are small. Had a sonogram
done Saturfay and results do not look favourable...

Wainting for aproval of Bosulif and wondering if I might still be able
to use it. MY doctor fears that my CML is back. However, my PCR/Fish
results from last November were completely negative... I am also having a
bone marrow aspiration done tomorrow. We will see what develops. I still
have a couple of hours to try and get some sleep..

Please take care and above all be HAPPY!!! :)

On Tuesday, February 10, 2015 at 5:57:49 PM UTC-4, wa2yyx wrote:

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] Re: Kidney Transplant

2015-02-19 Thread Marty Gartenberg

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 advancement on the list for kidney transplant Marty God
 bless you and I do hope that it happens soon!!!

 I am having serious kidney problems myself.  Have an appointment with the
 nephrologist later this morning...My kidneys are small.  Had a sonogram
 done Saturfay and results do not look favourable...

 Wainting for aproval of Bosulif and wondering if I might still be able to
 use it.  MY doctor fears that my CML is back.  However, my PCR/Fish results
 from last November were completely negative... I am also having a bone
 marrow aspiration done tomorrow.  We will see what develops.  I still have
 a couple of hours to try and get some sleep..

 Please take care and above all be HAPPY!!! :)


 On Tuesday, February 10, 2015 at 5:57:49 PM UTC-4, wa2yyx wrote:

 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] Re: Kidney TransplantI

2015-02-19 Thread Marty Gartenberg

 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 advancement on the list for kidney transplant Marty God
 bless you and I do hope that it happens soon!!!

  I am having serious kidney problems myself.  Have an appointment with
 the nephrologist later this morning...My kidneys are small.  Had a sonogram
 done Saturfay and results do not look favourable...

  Wainting for aproval of Bosulif and wondering if I might still be able
 to use it.  MY doctor fears that my CML is back.  However, my PCR/Fish
 results from last November were completely negative... I am also having a
 bone marrow aspiration done tomorrow.  We will see what develops.  I still
 have a couple of hours to try and get some sleep..

  Please take care and above all be HAPPY!!! :)


 On Tuesday, February 10, 2015 at 5:57:49 PM UTC-4, wa2yyx wrote:

 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] Re: Just checking in

2015-02-18 Thread Marty Gartenberg

Hi Suzieq,

Hopefully soon. but it will come eventually, and I thank you for the 18's
to everyone. Lately I have noticed more and more people on this site have
been also using it.

As far as the Desferal, I guess that it wasn't around when I had my bone
marrow transplant and receiving those 93 blood transfusions. Besides since
I had very little hemoglobin or red cells it probably didn't make too much
of difference.

18's and hugs [?]

Marty

On Wed, Feb 18, 2015 at 8:45 AM, 'educatorsusan' via CMLHope 
cmlhope@googlegroups.com wrote:

 I am not used to this new google format.  So, I am going to answer a few
 things.

 First of all, if you are getting transfusions (more than 10) you need to
 receive Desferal which is an iron chelator.  If you do not, your iron
 counts were be sky high.  I know this from personal experience.  My
 ferritin level is finally in the normal range after 10 years as of this
 past Wednesday!!!  YEAH!!  There is a  newer chelator but Oregon (Dr.
 Druker and his own hematologist) decided to leave me alone because I had a
 reaction to the Desferal...I have a reaction to everything it seems.
 Desferal took the zinc out of my body and well and I could not bend my
 hands, etc. and was in some amount of pain.

 No matter how much iron rich foods you eat, this will not help you and it
 will not hurt you.  The type of hemoglobin you are not manufacturing DOES
 NOT react to iron rich foods...another myth that Dr. Druker and my own
 hematologist locally dispelled.  I do not understand the total logic but
 they are different animals in the system.

 Congratulations, Marty, on finally receiving a kidney transplant soon!!!

 In Marty's honor, 18's to everyone!

 Hope my two cents worth is useful!

 I wanted to post to everyone and am not sure I did.

 I usually have a postscript after my name giving you my LONG history on
 Gleevec bu cannot find it right now.  If you search my name on this blog,
 you'll find it...I just do not know how to use this new google yet...

 Hugs,
 Susan Rosenthal
 Miami, Florida

 On Wednesday, February 11, 2015 at 9:44:45 AM UTC-5, Suzieq wrote:

 Hello CML Survivors:

 It's been some time since I stopped by and left word.  Thought that I
 should check on ya'll.sorry to hear of the troubles you are having
 Marty.  I do hope you receive your Kidney and all goes well.  Jeanie...I
 see you are having a few problems once again and I hope that the doctors
 can get you back on track. So many newer drugs now than when we all started
 our journey with Gleevec.

 My last doctor visit was December 31st.  Had really good blood work
 results and all looked good until I got my BCR-ABL results back.  They did
 not tell me that they were going to use a new lab.instead of sending it
 to where they always did,  they (Sitemen Cancer Center) are now doing the
 testing in-house.  I knew that the results had come back a lot quicker.
 Nothing like what I was use to, no graph, nothing.  Just said
 *Positive*  * 0.02%.*  I fell apart.  Course this was around 7:00 at
 night when I had picked up the mail after going to the movies. My husband
 was out of town.   The next morning (Friday), I called and left a message
 for the doctor to call me back. It was around 4 that afternoon when the NP
 called me back and we had a nice chat. That's when she told me that we
 really can't go by these results since we are using a new lab.  And,  it
 was a *more sensitive* test.  I asked her if I should up my dosage
 (remember I have gone from 400mgs. down to 200,  now to 100mgs. since I've
 been *non-detected* since *July '09.*  She told me no, to stay doing
 what I've always done and that if I wanted to come back in earlier than the
 ever six months as normally, I could.  So, we set that up where I will go
 back next month (March) the 25th and be retested.

 I guess I was so use to seeing that non-detected over a long period of
 time, that it gives one that false belief that we are in total remission
 and the CML is gone.  It's like my husband  I discussed..a few of the
 leukemic cells are still there all along,  just do not show up unless they
 use deeper tests.  This positive test brought me back to reality and
 reminded me exactly what Dr. Khoury told me in the beginning of my journey,
 There is no cure for CML yet.

 So, there's my story. I guess we will always be in this fight for the
 rest of our lives.  I'm hoping to continue on just the 100mgs.,  but if I
 need to go back to the higher dosage, I will.

 Keep Looking Up,
 Suzieq

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Re: [CMLHope] Re: Your hemoglobin counts

2015-02-16 Thread Marty Gartenberg

Hi Richard,

Well, your giving me more credit then I actually deserve. I lived in that
plastic bubble for seven months, and this would be my first kidney
transplant not my second. My first was the bone marrow one. All of the
blood transfusions were done for and directly after my bone marrow
transplant, and so far, more then twenty five years have passed and I
haven't had anymore.

As far as dialysis goes, you just have to sit there to stay alive, it is a
small price to pay, don't you think?

I don't know, maybe I follow that ever ready pink bunny around. [?][?]

18's

Marty

On Mon, Feb 16, 2015 at 12:22 AM, Richard H rbhuffm...@gmail.com wrote:

 I agree with totally. Since I am inly taking 300mg Gleevec I am presently
 experiencing a different set of various minor side effects.  Everything so
 far is minor so no problem.  If I start needing help maintaining my
 Hemoglobin I would certainly want to take.  I think I was taking about
 40,000 units a week.  I gave myself the shot  which was a whole lot better
 than spending 6 hours every three weeks receiving 2 units. I can't wrap my
 mind around how anyone could endure a BMT with at least 3 months in a
 bubble,  96 transfusions during that period,  dialysis, , a kidney
 replacement, more transfusions, more dialysis, and are preparing to do a
 second kidney transplant.  You are a miracle in progress, and that is why
 you such a valued member of this group,.

 18's

 On Richard H.

 Sunday, February 15, 2015 at 7:32:08 AM UTC-6, wa2yyx wrote:

 Hi Richard,

 Just because it didn't work (Procrit/Epogen) for you then that doesn't
 mean it won't work for you now. That should be discussed with your doctor.
 There are a lot of contributing factors so you can't really be sure until
 you have that discussion with your doctor. Possibly you weren't given the
 proper start up dose? Who knows?

 Remember, that it may take a week or more for it to start working. If it
 does it sure beats a transfusion.

 Yes, I am anxiously awaiting that phone call, hopefully soon.

 18's,

 Marty

 On Sun, Feb 15, 2015 at 12:26 AM, Richard H rbhuf...@gmail.com wrote:

 Thanks for the info.  While I was having my trials with Gleevec,  I
 did use Procrit/Epogen and it did not work for me.  I agree that it should
 be tried before doing transfusions.

 18's and I am getting excited to do a Happy Dance when you receive
 that phone call.
 Richard H.


 On Saturday, February 14, 2015 at 6:38:25 AM UTC-6, wa2yyx wrote:

 Hi Jeanie,

 Life is a complicated process.

 Having hemoglobin counts under 8 is a hard rock to chew on. I know
 because my usual hemoglobin counts are usually under 10 but since my
 kidneys no longer produce the hormone that goes into the bone marrow to
 help produce my hemoglobin my doctors give me a shot of either Procrit or
 Epogen (usually epogen because it costs less but still does the job it is
 designed for) to help my hemoglobin rise. With those shots my counts get up
 to eleven or so and last a couple of months. However your hemoglobin level
 has to be monitored because to much epogen/procrit can cause a stroke.

 In my case it may be different because my kidneys are what is causing
 this problem and as soon as I receive a kidney transplant the kidney should
 hopefully take care of this problem and relieve me of any further procrit
 or epogen.

 Until then I must live on a complicated sky walking wire. If I were to
 get any blood transfusions then my antigens may become more then zero which
 they are now in spite of having 96 blood transfusions during and right
 after my bone marrow transplant which was more then 25 years ago, which is
 not the best result for a kidney transplant.

 However all of my doctors are amazed as to why I am still zero antigen
 level with all of my previous blood, platelet, and globulin
 transfusions/infusions   Sometimes things may come back to bite me in the
 Azz, but hey, at least I got these 25 years so far.

 This seems to avoid any blood transfusions, but everyone is different
 so why don't you ask your onc about this? (a regimen of either procrit or
 epogen)

 I mean how much have I learned by going through all of this? And how
 much more will I be able to learn by going through a kidney transplant? I
 hope a lot more for a long time.

 18's Jeanie and everyone else, you just keep on keeping on things will
 get better.

 I love all of you!

 Marty

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Re: [CMLHope] Re: Your hemoglobin counts

2015-02-15 Thread Marty Gartenberg

Hi Richard,

Just because it didn't work (Procrit/Epogen) for you then that doesn't mean
it won't work for you now. That should be discussed with your doctor. There
are a lot of contributing factors so you can't really be sure until you
have that discussion with your doctor. Possibly you weren't given the
proper start up dose? Who knows?

Remember, that it may take a week or more for it to start working. If it
does it sure beats a transfusion.

Yes, I am anxiously awaiting that phone call, hopefully soon.

18's,

Marty

On Sun, Feb 15, 2015 at 12:26 AM, Richard H rbhuffm...@gmail.com wrote:

 Thanks for the info.  While I was having my trials with Gleevec,  I
 did use Procrit/Epogen and it did not work for me.  I agree that it should
 be tried before doing transfusions.

 18's and I am getting excited to do a Happy Dance when you receive that
 phone call.
 Richard H.


 On Saturday, February 14, 2015 at 6:38:25 AM UTC-6, wa2yyx wrote:

 Hi Jeanie,

 Life is a complicated process.

 Having hemoglobin counts under 8 is a hard rock to chew on. I know
 because my usual hemoglobin counts are usually under 10 but since my
 kidneys no longer produce the hormone that goes into the bone marrow to
 help produce my hemoglobin my doctors give me a shot of either Procrit or
 Epogen (usually epogen because it costs less but still does the job it is
 designed for) to help my hemoglobin rise. With those shots my counts get up
 to eleven or so and last a couple of months. However your hemoglobin level
 has to be monitored because to much epogen/procrit can cause a stroke.

 In my case it may be different because my kidneys are what is causing
 this problem and as soon as I receive a kidney transplant the kidney should
 hopefully take care of this problem and relieve me of any further procrit
 or epogen.

 Until then I must live on a complicated sky walking wire. If I were to
 get any blood transfusions then my antigens may become more then zero which
 they are now in spite of having 96 blood transfusions during and right
 after my bone marrow transplant which was more then 25 years ago, which is
 not the best result for a kidney transplant.

 However all of my doctors are amazed as to why I am still zero antigen
 level with all of my previous blood, platelet, and globulin
 transfusions/infusions   Sometimes things may come back to bite me in the
 Azz, but hey, at least I got these 25 years so far.

 This seems to avoid any blood transfusions, but everyone is different so
 why don't you ask your onc about this? (a regimen of either procrit or
 epogen)

 I mean how much have I learned by going through all of this? And how much
 more will I be able to learn by going through a kidney transplant? I hope a
 lot more for a long time.

 18's Jeanie and everyone else, you just keep on keeping on things will
 get better.

 I love all of you!

 Marty

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Re: [CMLHope] Change from Sprycel to bosulif

2015-02-15 Thread Marty Gartenberg

Hi Jeanie,

I hate it when a doctor tells you that something is your last hope. In my
opinion I think that you need to find yourself another more qualified
Oncologist. It just brings back some memories of my own. When I was first
diagnosed my doctor's associate came into my hospital room and right in
front of my wife tells both of us that I am going to die. With tears
running down both of our eyes I demanded that he leave.

I never told my doctor about what he said because I didn't want to start
problems for him. About a year after my transplant I went back to the
hospital for a check up and who was there? That same AZZ hole that told me
that. I went up right in front of him and told him that I am still alive,
and he could kiss my AZZ.

About a year later he died.

18's,

Marty

On Sun, Feb 15, 2015 at 10:32 AM, ICANDOALLTTC via CMLHope 
cmlhope@googlegroups.com wrote:

  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 [image: ][image: ]

 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 [image: ][image: ]

 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 wrote:

  Platelets down to under 400 and WBC were 7: that is a miracle.
 From over a million to almost normal.  The meds kicked in.  Now worried
 they might go to low.  Hehe. Hemoglobin went down to 12.8 after holding at
 13. Need to ear some iron foods.
 Thanks for prayers.

 Prayers  Blessings Jeanie 18's [image: ][image: ]

 On Feb 12, 2015, at 10:57 AM, Suzieq sheila@gmail.com wrote:

  Holly:  I am so glad to meet someone who also has Dr. Cashen as their
 doctor.  I love Dr. Amanda Cashen and her nurse practitioner, Holly.  As
 far as their testing goes,  I am assuming that they are going to do all of
 it there from now on.  I am glad that they don't have to overnight the
 blood any longer,  but I feel I need someone to explain their testing to
 me.

[CMLHope] Your hemoglobin counts

2015-02-14 Thread Marty Gartenberg

Hi Jeanie,

Life is a complicated process.

Having hemoglobin counts under 8 is a hard rock to chew on. I know
because my usual hemoglobin counts are usually under 10 but since my
kidneys no longer produce the hormone that goes into the bone marrow to
help produce my hemoglobin my doctors give me a shot of either Procrit or
Epogen (usually epogen because it costs less but still does the job it is
designed for) to help my hemoglobin rise. With those shots my counts get up
to eleven or so and last a couple of months. However your hemoglobin level
has to be monitored because to much epogen/procrit can cause a stroke.

In my case it may be different because my kidneys are what is causing this
problem and as soon as I receive a kidney transplant the kidney should
hopefully take care of this problem and relieve me of any further procrit
or epogen.

Until then I must live on a complicated sky walking wire. If I were to get
any blood transfusions then my antigens may become more then zero which
they are now in spite of having 96 blood transfusions during and right
after my bone marrow transplant which was more then 25 years ago, which is
not the best result for a kidney transplant.

However all of my doctors are amazed as to why I am still zero antigen
level with all of my previous blood, platelet, and globulin
transfusions/infusions   Sometimes things may come back to bite me in the
Azz, but hey, at least I got these 25 years so far.

This seems to avoid any blood transfusions, but everyone is different so
why don't you ask your onc about this? (a regimen of either procrit or
epogen)

I mean how much have I learned by going through all of this? And how much
more will I be able to learn by going through a kidney transplant? I hope a
lot more for a long time.

18's Jeanie and everyone else, you just keep on keeping on things will get
better.

I love all of you! [?]

Marty

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Re: [CMLHope] Your hemoglobin counts

2015-02-14 Thread Marty Gartenberg

Hi Jeanie,

We are all of GOD's treasures.

18's,

Marty

On Sat, Feb 14, 2015 at 7:59 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi Marty we love you too!!!
 We are all fighters and we will keep in fighting.
 You are a walking legend for everyone!!
 Keep writing your book-it's a treasure as you are.

 Prayers  Blessings Jeanie 18's [image: ][image: ]

 On Feb 14, 2015, at 7:38 AM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi Jeanie,

 Life is a complicated process.

 Having hemoglobin counts under 8 is a hard rock to chew on. I know
 because my usual hemoglobin counts are usually under 10 but since my
 kidneys no longer produce the hormone that goes into the bone marrow to
 help produce my hemoglobin my doctors give me a shot of either Procrit or
 Epogen (usually epogen because it costs less but still does the job it is
 designed for) to help my hemoglobin rise. With those shots my counts get up
 to eleven or so and last a couple of months. However your hemoglobin level
 has to be monitored because to much epogen/procrit can cause a stroke.

 In my case it may be different because my kidneys are what is causing this
 problem and as soon as I receive a kidney transplant the kidney should
 hopefully take care of this problem and relieve me of any further procrit
 or epogen.

 Until then I must live on a complicated sky walking wire. If I were to get
 any blood transfusions then my antigens may become more then zero which
 they are now in spite of having 96 blood transfusions during and right
 after my bone marrow transplant which was more then 25 years ago, which is
 not the best result for a kidney transplant.

 However all of my doctors are amazed as to why I am still zero antigen
 level with all of my previous blood, platelet, and globulin
 transfusions/infusions   Sometimes things may come back to bite me in the
 Azz, but hey, at least I got these 25 years so far.

 This seems to avoid any blood transfusions, but everyone is different so
 why don't you ask your onc about this? (a regimen of either procrit or
 epogen)

 I mean how much have I learned by going through all of this? And how much
 more will I be able to learn by going through a kidney transplant? I hope a
 lot more for a long time.

 18's Jeanie and everyone else, you just keep on keeping on things will get
 better.

 I love all of you! 35D.gif

 Marty

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Re: [CMLHope] Re: Kidney Transplant

2015-02-12 Thread Marty Gartenberg

Hi Shannon,

Thank you for all of your crossed joints [?] I appreciate it. I know that it
will eventually happen just as I know there WILL be a cure for CML, and
that is what I have all of my joints crossed for.

18's, and hugs [?]

Marty

On Thu, Feb 12, 2015 at 5:46 AM, Shannon L shannonl.cam...@gmail.com
wrote:

 Hi Marty

 I have my fingers and toes crossed I hope it happens very soon

 Shannon

 On Wednesday, February 11, 2015 at 8:57:49 AM UTC+11, wa2yyx wrote:

 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] Just checking in

2015-02-11 Thread Marty Gartenberg

Hi Suzieq,

Don't worry about this to much. Remember there was a different lab used and
they used a more sensitive test. I would just wait until your next ABL/PCR
test and see what happens. I have already seen this many times.

I keep on saying that there will be a cure for CML soon. It is only a
waiting game just like my kidney transplant. I have been waiting for almost
four years for it to come, just like you waiting for that cure. It will
come! They are always making progress. In my day there was no TKI's but
only a bone marrow transplant and I just used my perseverance to go on, and
so should you.

Just look at how long you have been on a TKI and your still here. Now isn't
that saying something? You bet it is, and you mentioned that this will
always be a fight for our lives. Suzieq, there will always be something
that makes us fight for our lives. When one thing is over with then
something else pop's up, it is just how one deals with it.

Your living your breathing and you get up every morning. What else can you
ask for?. This is how I look at life and I am now 70 years old and still
kicking Azz even with what I am going through. Just consider it a bump in
the road.

And you already know me. I don't give pep talks just using my logic.

So, till tomorrow.

Love ya Suzieq.

18's,

Marty

On Wed, Feb 11, 2015 at 9:44 AM, Suzieq sheila.a.wat...@gmail.com wrote:

 Hello CML Survivors:

 It's been some time since I stopped by and left word.  Thought that I
 should check on ya'll.sorry to hear of the troubles you are having
 Marty.  I do hope you receive your Kidney and all goes well.  Jeanie...I
 see you are having a few problems once again and I hope that the doctors
 can get you back on track. So many newer drugs now than when we all started
 our journey with Gleevec.

 My last doctor visit was December 31st.  Had really good blood work
 results and all looked good until I got my BCR-ABL results back.  They did
 not tell me that they were going to use a new lab.instead of sending it
 to where they always did,  they (Sitemen Cancer Center) are now doing the
 testing in-house.  I knew that the results had come back a lot quicker.
 Nothing like what I was use to, no graph, nothing.  Just said *Positive*
  * 0.02%.*  I fell apart.  Course this was around 7:00 at night when I
 had picked up the mail after going to the movies. My husband was out of
 town.   The next morning (Friday), I called and left a message for the
 doctor to call me back. It was around 4 that afternoon when the NP called
 me back and we had a nice chat. That's when she told me that we really
 can't go by these results since we are using a new lab.  And,  it was a *more
 sensitive* test.  I asked her if I should up my dosage (remember I have
 gone from 400mgs. down to 200,  now to 100mgs. since I've been
 *non-detected* since *July '09.*  She told me no, to stay doing what
 I've always done and that if I wanted to come back in earlier than the ever
 six months as normally, I could.  So, we set that up where I will go back
 next month (March) the 25th and be retested.

 I guess I was so use to seeing that non-detected over a long period of
 time, that it gives one that false belief that we are in total remission
 and the CML is gone.  It's like my husband  I discussed..a few of the
 leukemic cells are still there all along,  just do not show up unless they
 use deeper tests.  This positive test brought me back to reality and
 reminded me exactly what Dr. Khoury told me in the beginning of my journey,
 There is no cure for CML yet.

 So, there's my story. I guess we will always be in this fight for the rest
 of our lives.  I'm hoping to continue on just the 100mgs.,  but if I need
 to go back to the higher dosage, I will.

 Keep Looking Up,
 Suzieq

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[CMLHope] Kidney Transplant

2015-02-10 Thread Marty Gartenberg

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] Ponatinib

2015-02-07 Thread Marty Gartenberg

Dear Susan,

Yes, I do keep on going. If I didn't then I would no longer be here right
now. My message to everyone is to just keep on going because where would
you be right now if you didn't?

Susan that bath is a wonderful idea for just being able to relax and ease
the tension in you.

I also notice that you and several others are starting to use the 18's
symbol. I am very happy to see that because it's meaning is life.

18's,

Marty

On Sat, Feb 7, 2015 at 12:05 PM, 'Susan Zimmerman' via CMLHope 
cmlhope@googlegroups.com wrote:

 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

Re: [CMLHope] Ponatinib

2015-02-06 Thread Marty Gartenberg

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 [image: ][image: ]

 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 water...snowy egrets..and then I
 woke up!!!  Must get back there soon one day...maybe at the end of this
 year...hope to meet you when I do.

  Will look to hear from you about your test results tomorrow.

  Take care, Beth

 -Original Message-
 From: Myvety2k via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Tue, Feb 3, 2015 5:57 am
 Subject: Re: [CMLHope] Ponatinib

  Hi Beth, I received a call from my son Derek about the snow he lives in
 North Chicago.  I hope I never have to move back north, can't handle the
 cold and snow.

 greenie

  In a message dated 2/2/2015 10:42:17 P.M. Eastern Standard Time,
 cmlhope@googlegroups.com writes:

 Dear Skip and Jeanie, Thinking of you both as you navigate new terrains.
 Hope the ponatinib works soon Jeanie and sorry you are struggling Skip. Do
 let us know if you what you decide regarding ponatinib. I think about it
 also.

[CMLHope] My twelfth surgery on my fistula

2015-02-03 Thread Marty Gartenberg

I got up this morning and went to the hospital to have some corrective
surgery to the fistula in my arm. This operation was a little different
from all of the others because I had to be intabated and general Anastasia
was used.

The operation lasted more then three hours, hopefully this one will work
for a while. This is the twelfth in a year, hopefully a kidney transplant
will come soon. I have been waiting for almost four years.

I would like to thank everyone for their prayers and good wishes, it means
a lot to me.

We are all fighters and we must do what ever we have to, and I really know
what all of you are going through, and no matter what we do go through we
are all here for each other. We are just like a close knit family. GOD
bless you all.

18's,

Marty

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Re: [CMLHope] My twelfth surgery on my fistula

2015-02-03 Thread Marty Gartenberg

Thank you Beth, it is all of you that means the world to me. Remember I am
here for a reason, and all of you are that reason.

18's,

Marty

On Tue, Feb 3, 2015 at 5:29 PM, bkbarney via CMLHope 
cmlhope@googlegroups.com wrote:

 Dear Marty,

  You, like Zavie and others like you here now, are and have been our
 fearless leaders, cheering sections, and prayer holders. You serve as both
 our guide as a long term survivor - sharing everything you have learned
 along the way to help each of us, and our friend. You are a constant ray of
 light for me and I know for others..I hope today, as you survived yet
 another surgery for your fistula, that your dream of getting a kidney will
 happen this year. It's my deepest wish for you.

  We need you. I need you.

  Just thought you should know what you mean..as you so often speak to all
 of us about family.

  Bless you too.
 18's dear Marty,

  Beth


 -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: CMLHope CMLHope@googlegroups.com
 Sent: Tue, Feb 3, 2015 4:21 pm
 Subject: [CMLHope] My twelfth surgery on my fistula

  I got up this morning and went to the hospital to have some corrective
 surgery to the fistula in my arm. This operation was a little different
 from all of the others because I had to be intabated and general Anastasia
 was used.

  The operation lasted more then three hours, hopefully this one will work
 for a while. This is the twelfth in a year, hopefully a kidney transplant
 will come soon. I have been waiting for almost four years.

 I would like to thank everyone for their prayers and good wishes, it means
 a lot to me.

  We are all fighters and we must do what ever we have to, and I really
 know what all of you are going through, and no matter what we do go through
 we are all here for each other. We are just like a close knit family. GOD
 bless you all.

  18's,

  Marty
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Re: [CMLHope] Ponatinib

2015-02-03 Thread Marty Gartenberg

Greenie,

They are called Q-Tips because all that you see from behind is like
looking at a giant Q-Tip. Sometimes you don't even see that. It is like the
car is being driven without anybody behind the wheel.

Some suddenly decide to stop right in the middle of the street for no
apparent reason . Some drive the wrong way down a highway. Some turn
without looking to see if it is clear, and worst of all they ignore stop
signs and red lights, and change lanes without looking to see if it is
clear, even three lanes at a time.

About ten years ago an elderly lady was leaving the community and she
failed to stop at the red light right in front of the community. A large
dump truck hit her car broadside killing her. Another time I was driving on
our main community road and a woman didn't stop at one of the intersections
and I slammed on my breaks and she just missed me. She said that she didn't
see me.

GOD help us all!

18's,

Marty

On Tue, Feb 3, 2015 at 12:05 AM, Richard H rbhuffm...@gmail.com wrote:

 I have a son that has lived  in the Seattle area 19 years.  He says the
 same thing as you are saying in Fla.  No one knows how to drive the hills
 plus the cities only a bare minimum of equipment that can't keep the
 freeways clean.
 By the way, That hugh Storm that just went through the Midwest went north
 of where I live. They measuring about 30 miles north, we had rain and last
 night dusted the car and grass with snow.

 Richard H.

 On Monday, February 2, 2015 at 3:45:49 PM UTC-6, greenie wrote:

  Jeanie, it's a good thing we don't get snow or ice here in Florida
 because the way these people drive here the insurances companies would go
 out of business in one day.  They can't drive here when the roads are dry.

 greenie

  In a message dated 2/2/2015 4:11:00 P.M. Eastern Standard Time,
 cml...@googlegroups.com writes:

 Thanks Skip-I've never had blood counts that low--always battling high
 ones.
  Wow!  That storm sounds neat!
 We never get sleet and snow in Florida.   I saw a sleet and snow storm in
 my visit to Switzerland.  My kids loved it and were playing in it.  I
 wasn't that brave--I went inside hehe.
 I hope you get your platelets soon.

 Prayers  Blessings Jeanie 18's [image: ][image: ]

 On Feb 2, 2015, at 2:30 PM, 'Skip Duffie' via CMLHope 
 cml...@googlegroups.com wrote:

   I am so sorry you counts vary so much mine have been doing that now
 for a few years, Fri my HGB* was 79.. my wbc was 1.5, .. plts was 17 ..
 neut 0.3... ANC 0.279 normally I would get somePLTS tomorrow but we have
 another big storm going to hit tonight and will have freezing rain in
 morning and all the snow will turn to ice.. so we will hold off until Wed.
 I am sorry for not posting much but I find using the computer very makes me
 very tired lately. still thinking about Ponatinib, this is my fourth year
 without anything except blood and platelet infusions *
 *Skip Duffie*

   --

   My brother lives in Naples, I live in South Fort Myers min. from the
 beach.  The weather will be Mon. 78, Tues 72, Wed 73, Thur 72, Fri 69 and
 Sat 68. Below normal should be in the low 80's BUT better then SNOW

 Greenie

  In a message dated 1/31/2015 11:39:12 P.M. Eastern Standard Time,
 jl...@rogers.com writes:

 Hi I am OK I had my counts done last Wednesday and my platelets were 35
 and white blood cells 2.8 and neutrofils were 1.5. Hemoglobin 135. I am
 still off the drug and have another check this coming Wednesday. I will go
 back on the drug then and probably at 2 or three a week. My wife and I will
 be coming to Naples Florida to visit friends for a week or so. I hope it
 will be warm. Have your counts come down ?

 Sent from my iPad

  On Jan 31, 2015, at 3:04 PM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:
 
  Hi John
  I go to Moffitt cancer center.   How are you?
 
  Prayers  Blessings Jeanie 18's [image: ][image: ]
 
  On Jan 31, 2015, at 10:47 AM, John Barrons jl...@rogers.com wrote:
 
  Hi Jeanie: Where are getting treated? John
 
  Sent from my iPad
 
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Re: [CMLHope] Ponatinib John

2015-02-01 Thread Marty Gartenberg

Hi John,

Just so you know when you have CML then your uric acid will also usually be
high. That is why you are then started on Allopurinol. I have been on it
for more then 25 years and I hardly ever get anymore gout attacks.

18's,

Marty

On Sun, Feb 1, 2015 at 11:22 AM, John Barrons jl...@rogers.com wrote:

 Hi I do have gout but I think that is just a side effect from leukemia. I
 have had in the past terrible pains in my toes from gout, put not so much
 recently. I am growing nodules on knuckles on my right hand and on some
 toes. Other than that, nothing else

 Sent from my iPad

 On Feb 1, 2015, at 8:14 AM, ICANDOALLTTC via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi John,  Good to hear everything is ok.
 My WBC came down to 8 but the platelets remained in the millions.
 Some side effects--got a backache for some reason.
 Do you remember the side effects when you first started?
 Blessings
 Jeanie3

  In a message dated 1/31/2015 11:39:12 P.M. Eastern Standard Time,
 jl...@rogers.com writes:

 Hi I am OK I had my counts done last Wednesday and my platelets were 35
 and white blood cells 2.8 and neutrofils were 1.5. Hemoglobin 135. I am
 still off the drug and have another check this coming Wednesday. I will go
 back on the drug then and probably at 2 or three a week. My wife and I will
 be coming to Naples Florida to visit friends for a week or so. I hope it
 will be warm. Have your counts come down ?

 Sent from my iPad

  On Jan 31, 2015, at 3:04 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:
 
  Hi John
  I go to Moffitt cancer center.   How are you?
 
  Prayers  Blessings Jeanie 18's [image: ][image: ]
 
  On Jan 31, 2015, at 10:47 AM, John Barrons jl...@rogers.com wrote:
 
  Hi Jeanie: Where are getting treated? John
 
  Sent from my iPad
 
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Re: [CMLHope] Update Jeanie's blood counts

2015-01-31 Thread Marty Gartenberg

Susan, I don't want to leave you out, so here it is from me to you. [?]

18's,

Marty

On Fri, Jan 30, 2015 at 11:27 PM, 'Susan Zimmerman' via CMLHope 
cmlhope@googlegroups.com wrote:

 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
 nausea because my wife started to get the nausea also.  Could be Florida
 weather, tree's, flowers, etc.

 greenie

  In a message dated 1/26/2015 6:05:17 P.M. Eastern Standard Time,
 cmlhope@googlegroups.com writes:

 Greenie, Remember, if you do need to swap a TKILots of good options
 with low doses because you have done so well for so long on Gleevec...you
 are a warrior. My blood counts are O.K...but I appreciate the anxiety of
 all this for all of us..it's one of the harder parts to manage well. Good
 luck to you! Beth


 -Original Message-
 From: Joan lilak...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Mon, Jan 26, 2015 5:01 pm
 Subject: Re: [CMLHope] My Update anyone had relapse after 5

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