Dear Rusty,
1. There is no cure for CML.
2. Secondly unless you have a resistance or allergic reaction or some other mitigating factor (like it cause me severe nerve pain) as long as glivec is keeping you in remission you will not be able to stop taking it.
3. If you do stop yes your CML will return.
My Neurologist was diagnosed 8 years ago with CML, he was on gleevec or glivec until the last year or two I believe, he is in the AMN something another trial right now. I was also told in 2003 that with gleevec I would survive five years but with all the new drugs that are coming out I should live a lot longer. Yes your diet will change because gleevec has some pretty rough side effects among which are diarrhea and nausea which in turn brings on loss of appetite. It can be pretty rough the first year or so but it is better then the alternative.....death......right? I know there will be several people in this group that will answer your question a lot better then I did and with greater detail. Just know that you will be okay and that the people here are very sweet and caring and available to talk to.
Hugs,
Katy
--
DX: 10/03 400mg gleevec
1st remission: 12/03
#677 in Zero Club
1st relapse: 6/05 raised to 600mg gleevec
2nd second remission: 8/05
2nd relapse: 6/06 to current
Taken off of gleevec 6/06
xanga.com/katybug45
DX: 10/03 400mg gleevec
1st remission: 12/03
#677 in Zero Club
1st relapse: 6/05 raised to 600mg gleevec
2nd second remission: 8/05
2nd relapse: 6/06 to current
Taken off of gleevec 6/06
xanga.com/katybug45
-------------- Original message --------------
From: "rusty blood" <[EMAIL PROTECTED]>
>
> I was diagnosed with CML earlier this year and have had a good blood
> response to Glivec. I am generally not into Western Medicine.
>
> My dr told me the other day if I had a 0% reading on my PCR then I
> would have 100% chance of living 5 years and I was cured. The
> definition of cured being I would continue on Glivec. Well like many
> others I am grateful for Glivec but not sure what quality of life it is
> with the side effects.
>
> So my questions are:
>
> 1. Has anybody decided to go off Glivec after dramatically changing
> their diet?
> 2. What supplements are we allowed to take and what are we not. My dr
> seems to roll his eyes when I mention supplements.
> 3. W hat generally happens if you go off Glivec? Does it all come
> flooding back.
> 4. If you go off Glivec for a short period does this create resistance
> to the drug.
> 5. Has anybody cured themselves by alternative therapies?
>
> I am not sure if there are many folks that are on this board that are
> just alternative health folks? Are there alternative health folks that
> have come to the decision that the only way to go is Glivec. Anybody
> cured themselves naturally by dramatically changing their life.
>
> Anybody figured out if there is a link between leukemia and candida.
>
> Oh so many questions.
>
> I believe in quality of life not quantity so hence my thought process.
>
> Cheers.
>
> Not so rusty blood
>
>
>
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