I have just found out that Ponatinib (at the current dose) is not making the difference to my counts that we hoped it would and the consultants are considering upping the dosage to see if that helps.
I have already tried Glivec, Dasatinib and Nilotinib and, due to a variety of issues, not been able to continue with them. Ponatinib has had some side effects (blood pressure/ thyroid/ bad skin etc) but has probably been the best of the lot.
After nearly five years my lowest ever count has been 1.2 so nowhere near that elusive zero that we all search for and I am starting to wonder whether I will ever attain it using drugs or whether (and believe me I have been putting this off) I will have to more seriously consider a BMT.
Any words of advice/ encouragement greatly appreciated as I am feeling a tad miserable about it at the moment!
K
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Dear Karen,
I am sorry to hear your response to ponatinib has not been as good as hoped. 1.2 is a complete cytogenetic response (1.5) but I agree you would want to see MR... at least 3 log (0.1%) to feel confident.
Maybe a rise in the dose will do the trick- at least worth a try before you commit to an SCT- mind you I am almost 10 years post SCT and still doing well. It seems so long ago now. I know its a big decision (I had no choice back in 2003 as the 2nd Gen TKIs weren't quite with us) but for some of us it is the only answer.
Have you had your plasma levels checked? It might be an idea just to see if you are actually metabolising enough of the active ingredients?
I do hope things improve- and you are not suffering too much. Low thyroid is no joke either!
Best... Sandy