visited HH yesterday (18th) its been 18 weeks since being taken off imatinib & not much has changed,blood levels about normal for me ,but platelets at 157 are down from the dizzy hights of 185.(in the normal range) pcr at the 12 week mark was still 0.000. spleen still very large and painful and showing no sign of shrinking to everyones disapointment.mri scan shows small resevoir of marrow and its hoped this would grow and spleen would shrink. one real change,no eye bleeds,havent had one since stopping imatinib. i kept a complete record of them and had twice as many in the left eye compared to the right. I was hoping the fatigue would ease up, but no change there.how do you convey to others this problem?they say you look fit and healthy and expect you to keep up with them in anything physical.(stop moaning).
it seems as if its going to be a long process.still talk of a spleenectomy but i"m not keen on that at the moment. next visit to HH in 6 weeks.
les.
You are here
18 weeks off imatinib
Hi Les
Thanks for the update. I can see you carry on being a 'problem'. It is a very unusual situation, well for me anyway, your PcR is undetectable and yet you have all these other problems with your marrow. Seems like your spleen is hogging allthe cells !!!
Enjoy your Glivec free time ! and the lack of eye bleeds.
Best wishes and please update when you next go to HH.
Elizabeth
hi everyone, hope that you are all doing ok? my husband has been on gleevac for exactly a year. his last bone marrow tests showed that he is in complete molecular remission. can anyone explain what this means? as he still has to take same dose of gleevac? he is still being treated by dr moir at milton keynes macmillan unit. they want his brother to give a bone marrow sample in a months time, to see if there a match. im confused can anyone help explain things to me? thanks. belinda.