Hi Kathy,

I was dx/2006 and was also overwhelmed in the beginning but hang in there, it got better for me and I hope it does for you also.  I went to see Doctor Druker (he created gleevec) last year and he told me that the life expectancy is about 30 years, and probably more since by then there will most likely be more treatment options and hopefully a cure. I hope this helps to ease your mind. Take Care, Tess.

This means that I can live to be 100.   YES!!

Hi Kathy and welcome aboard.

As the others have said, for the great majority of us life expectancy will probably be normal (although we may spend slightly more of it napping) and we will eventually die of something else.  You may even live longer than otherwise as there is some evidence that Gleevec lowers cholesterol

With more drugs already in the pipeline to deal with the few mutations that the current drugs don't cover, I won't be surprised if in a few years' time the main causes of CML- related death are:

1. Traffic accident following cramp in your accelerator foot; and
2. Shrapnel wounds from exploding porcelain...

I hope your side effects improve (they do for many people).  Keep positive, keep taking the little orange pills and I look forward to hearing of your progress.  If you have any queries at all then this is the place to come.

Phil

Hi Kathy:

     I am reading all the answers to your question, and I also heard 30 years, but probably more.  I was diagnosed in 1998, and like Phil said we probably will be doing a lot of napping.  It seems like the Fatigue is the worst for me.  I deal with all the other side effects.  I am in Remission, but we have  people who have never achieved a remission and still going on their medications.  Keep posting with any questions you have.  Your still new to all of this.

    You will meet a bunch of great people, who are always ready to help you in any way they can.

    Glad you  joined us.

Susan

Hi Kathy.

Sorry to be flippant earlier.

Welcome to the forum.

a safe place to commiserate with each other, but also a place to share the joys of our lives

Just diagnosed; scheduled to begin Gleevec on Dec. 11th, coincident with a bone marrow test.

yes, the list of possible side effects, from Gleevec, et al, is as long as my arm; perhaps longer.

I can only sympathize with you, and all of us, but it certainly beats the alternative.

Swollen eyes probably means you get to wear sunglasses all through the winter.

I'll be making all the dietary adjustments, I can, to combat the edema

I take BP medication, diuretics, Lopressor, Losartan; they play with my potassiium levels, so i eat a banana a day, dried prunes, apricots, pomegranate juice.

I normally eat large quantities of fruit; but fruit apparently doesn't combine well with Gleevec, so I'll need to change some of it out.

I need to develop a regimen of supplements, including CoQ-10; already have enough muscle spasms, cramps, pain; don't need any more.

never stop sharing; from my short experience with this forum; there's a wealth of knowledge and experience here for our edification.

fortunate for us

Buzz

Hi Kathy

I was dx Oct 2005 so 4 years ago now. My onc has said that I can expect a long life, as long as nothing else gets me.   I was 46 when dx and my children were 12 and 10 so this was a relief.

I don't post too often, but just to let you know I am on 400mg Glivec and while not attaining PCRU my last PCR was 0.08% (Kings's in London UK don't use the log reduction system we just get a % number). I have been marching down from 0.7 % at 12 months PCR, so a slow but steady fall.

As for side effects, all my initial side effects have gone, with the exception of occasional finger, toe cramps - have inccreased my intake of bananas as I finf this helps. My eyes can be puffy in th emorning if I haven't drunk enough water during the previous day, or I have drunk too many glasses of wine at a party. Stomach issues are easing but pop along to remind me I'm on G every now and again, been OK lately so I say this with everything crossed. The weight I put on has now started to drop off slowly, after months of dieting not working, although I do only need to lose a couple of pounds to put me back to pre skinny dx stage. Had 2 eyes bleeds in the whole 4 years and nothing else.

I work as a supply teacher ( 5 - 11 yr olds) - so part time really (well most weeks) but I am looking for a full time post now.

This is a great site for questions and support.

I just wanted to show that not all of us suffer from side effects and do live a normal and active life. In fact the taking of the Glivec at dinner has become part of our routine. When the chidlren set the table one of them puts my little gold tab by my water glass.

ATB

Marian

Generally, Gleevec is very safe to handle since it is coated in iron oxide (rust).  The inner core has the following cautions about handling Gleevec:

"women who are pregnant or who may become pregnant should not handle this medication"

"Gleevec tablets should not be crushed. Direct contact of crushed tablets with the skin or mucous membranes should be avoided. If such contact occurs, wash thoroughly as outlined in the references. Personnel should avoid exposure to crushed tablets."

These cautions are likely required by Lawyers.  The one about crushed Gleevec is because Gleevec can inhibit cKIT enymes in the skin (i.e., rashes can occur).

I would encourage continuing the ritual of putting out the Gleevec and water.  Sounds therapeutic for the family.