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bone marrow

dear all,
I had cml for past 1 1/2 years. I take 600mg gllivec till last month. but my doctor told that my fish test report shows any improvement. so he ask me to tissue matching test with my own brother.but unfortunately both of our tissues are not matched. after this result my doctor increase my dosage to 800mg.I want to know about bone marrow in deatil.anybody help me regarding this. also i want to know whose tissue will match for me except my own brother or sister? i had some more side effects now.daily i had bleeding in throats or gums(i dnt know where it comes)and also swelling in my eyes.Is it only side effect or something else.Plz anybody answer for my doubts.

Hi Kirba,

It might be a good idea to see a (another) CML specialist for a second opinion. There are many other drugs that work where Gleevec doesn't.

In this day an age it doen't make sense to go for a transplant, especially a MUD (Matched Unrelated Doner) before exhausting the other drugs.

It is also a good idea to do mutation testing. This can give you a good clue to the type of medication you should be on.

Your side effects are probably from the high dose of Gleevec.

Could you also post your FISH results?

Zavie

Hello,
My son has CML. He was recently switched from Imatinib (Gleevec) to Dasatinib (Sprycel.) At that point, our doctor advised us to check our other children for an HLA match as well.

While he's doing well on the new meds, the studies seem to indicate that once you have "Imatinib failure" or resistance, there is a greater likelihood that you may resist other meds as well.

Sprycel is fairly new on the market, so there aren't many studies yet. So it may turn out that the newer meds are actually better than Gleevec and just as long lasting (or longer.) Right now, Imatinib is the standard first option.

Also, supposedly there are fewer side effects with Sprycel. That's been the case with my son. He had terrible cramping and bone pain with Gleevec and instead of increasing his dose, he switched meds. He has suffered very few side effects with Sprycel so far.

I agree with Zavie that you should consider a second and even third opinion. It's remarkable how CML treatment is changing so quickly. I actually find new studies almost monthly.

Locating a match was also very comforting for my family.

I wish you well. Take care.

Regards,
Tracey

dear zavie,

AT the time of diagnosis my fish test shows that 85% positive before 1 1/2 year.afte one year taking gleevec(400mg) FIsh was 84%. after 1 1/4 year taking gleevec of 600mg my fish was 85%. Now they increase my dosage to 800mg for the past 15 days.