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Not responding to Glivec

I was diagnosed with CML a year ago and have been on Glivec. Despite an increased dosage I have only achieveda 1 log reduction. None of my three sisters is a match and obviously we are looking at alternative therapies. As a bone marrow transplant is the only cure what are the success rates for non blood relatives transplants?

My dagnosis cam eabout because of extreme tiredness. Despite a years treatment and my monthly blood counts being good I still have little or no energy - is this because the Glivec is not working?

Hi Lin,

Fatigue is one of the side effects of Glivec and is an indication that Glivec is working. In my personal case, the fatigue lasted 9 months before it went away. You may take you a little longer.

I am not a great fan of a MUD (Matched Unrelated Donor) BMT. The mortality statistics are simply too high for my liking. (50% of MUD BMT patients are dead within 5 years is a sobering statistic.) I would exaust trying all the new medications before going the BMT route.

To help you decide, there is an excellent paper by Dr. Mauro and Dr. Maziarz that will help. The flow chart section is easy to follow.

http://hep.uchicago.edu/~seturner/transplantdecision.pdf

Zavie

Zavie Miller (age 69)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca

Hi Lin

I was dx Feb 2005. Was on Glivec since then. Increased to 800mgs Oct 2006. I am now taking Dasatinib as of last Fri. Is this an option for you ?

Zavie is right about fatigue. I would say it took me personally at least a year before i started to feel any better.As for an unrelated bone marrow transplant i'd be very reluctant to go down that road. I'd only do it if there was no other route to take.

Take care
Elaine

Thanks for your reply Elaine. My consultant is writing to my health Board for permission to fund Dasatinib for me. Although it has been licensed by NICE the Welsh Assembly have not released funding. I hope that this is going to be successful. Did you have side effects with Glivec? what about on Dasatinib? On 600mg I am having trouble coping with the upset tummy and water retention around the eyes.

Hi Lin

Yes i did have side effects with Glivec. Joint pain , nausea , bowel problems and cramp and water retention , eyes and ankles. When my dosage was increased to 800mgs in Oct 2006 i decided to split the dose , morning and night. It helped. As for Dasatinib , i've been on it just over a week now and the only problem i seem to be having is bowel problems and stomach cramps.

Which have been a bit bad but i'm hoping it will settle down.

Good luck hope you get the chance for Dasatinib. Please let me know how you get on.

Elaine