Dear group.
Please will you give me your advice in the following problem I'm facing now.
After being diagnosed in sept. 2001 and being treated with Hydrea, interferon and 11 years Gleevec,
my dr. advised me mid 2013 to change to Nilotinib because my PCR was rising (just a bit). And of course I had side effects
with the Gleevec. Nilotinib and Dasatinib should be easier to handle and maybe better working.
It turned out, I had prolonged QT-interval, so Nilotinib was not an option.
I started dasatinib but the QT-interval rose from 450 to 500 in a week so had to stop. After that I have been proscribed Bosutinib.
My PCR became PCRU in a few weeks, and the diarrea was not nice but good to handle.
Unfortunately after a few months I had to take a break, because my liver protested. But after a break I could restart Bosutinib
and my PCR became again PCRU.
In oct. 2014 I became ill. Extremely tired and not enough breath. It turned out, I had pleural effusion.
At first it seemed a pneumonia, but after this and all other possibilities were ruled out, it had to be the Bosutinib.
I changed back to Gleevec, but the pleural effusion worsened. Only after I stopped Gleevec i felt better and the PE reduced.
Four weeks later I restarted Glivec and in no time I was lying back in bed tired, no breath. Because i felt so bad, I stopped
the Gleevec and after one day I felt much better. I lost a lot of water without diuretics.
They advise me now to undergo a pleurodesis. I myself prefer to take again a break till the PE is cured and after that restart the Bosutinib.
Maybe before the break a period of Bosutinib, because I'm afraid in the mean time my PCR will have increased considerably.
I have PE since oct. so one or two months longer don't matter. ;o)
My Haematologist has said, she will not subscribe Bosutinib for me now. Maybe after the pleurodesis.
Has anyone of you also experienced this problem, and what shall I do?
Kind regards
Ria