good to see you active again Marty
SkipD

________________________________
 From: Martin Gartenberg <[email protected]>
To: [email protected] 
Sent: Friday, December 16, 2011 1:44:10 PM
Subject: Re: [CMLHope] Recent Doctor's visit
 

Hi Suzieq,
 
I am very happy to hear of your great responce to the gleevec. I'm sure that 
your test will still continue to be "Hallelujah", as you say. If this continues 
I think that there is a strong possibility that you can evntually be off of 
gleevec. I'm praying that this will happen for you. I have known several CML'rs 
that this has happened to.
 
At first they felt that if they got off of gleevec their disease might return 
and still wanted to stay on it like having a safety net. Several finally 
decided to stop and were sucessful...Then there was my friend Jeff C. who was 
on Alpha Interferron and was really going through very difficult times. He was 
on it for many years and his BCR-ABL finally went to as you say "Hallelujah" 
but he was afraid to stop it. His doctors had told him to first try to take a 
lesser dose which he started doing and he was still BCR-ABL- so he finally 
stopped and he is doing fine today. The Alpha Interferron actually burned to 
S**T out of his Leukemia.
 
Anyway, there always to seem some sort of consequences, at least for me. But 
first I would like to tell you, if you didn't already know just how lucky you 
really are. I had to go through a bone marrow transplant more then 22 years ago 
because in that time there were no drugs like gleevec. I really suffered with 
getting tons of chemothrapy and total body radiation. The radiation burned my 
body but I was finally able to recover from all of it.
 
Right now I am sitting in a dialysis center having dialysis. It took all of 
these years to finally destroy my kidneys, but there is something that I would 
like to teach you.
 
No matter what you may go through in life you have a life as so do I. Every day 
is a gift and I learned to live life each and every day. Some days may be "bad" 
days but the next day it is a "good" day. It's simply how you or I handle it.
 
I wish you a very healthy and happy holiday season, and this coming New Year 
may you be free of the bonds that hold you. I sincerely hope and pray you are 
one of those that has beaten this horrible disease.
 
I send you 18's (this means life)
 
Marty
 
 
 
 
 Just something to think about


On Wed, Dec 14, 2011 at 11:18 PM, Suzieq <[email protected]> wrote:

Hello fellow CML Survivors:
>
>Well, today was my 6 month's check up with my Hem./Onc. & all was
>good.  Blood work looks promising & they seemed pleased.  Will get the
>BCR-ABL in about 10 days or so and I'm praying for another "none
>detected".....will be four in a row, I believe....which means 2 years
>straight of a big fat "0"!   It will be 8 years this coming February
>when I started Gleevec........"the wonder drug"..........Hallelujah is
>all I can say!
>
>Oh.....I also received a message from Novartis.  I've been with their
>"My CML Circle" now for about three years & they have paid my co-pay
>for the past couple of years.  Well, as of Dec. 31st, they will no
>longer be covering that for Gleevec patience who are registered with
>them.  But, they will cover up to a $150 of Tasignia patients who are
>registered with them,
>.  I don't know if that's a month or what.....since I don't take it, I
>don't know a whole lot about it.  But, for those of you who do,  you
>might want to check into this if you need some help each month.
>
>God bless each and every one of you,
>
>Suzieq
>
>--
>[CMLHope]
>A support group of http://cmlhope.com
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