My wonderful significant other of 35 years was diagnosed 18 months ago with CML and did pretty-to-very well for 9 months on Gleevec before it stopped working. He was briefly on Sprycel and even more briefly on Tasigna. He's had WBC counts from 175,000 to 2,000 and back again, veering wildly. He's 70 years old, so I suppose he's not as resiliant as you younger patients.
This week we went to Moffitt Cancer Center in Tampa for another visit and he is in line to go into the ponatinib study as he has the T315I mutation.
Had a long meeting with the program coordinator and the physician, both explaining that pancreas problems were the most likely side effect to occur. Bill's never had pancreatic problems, so no big deal. He hops up onto the table (as well as a CML patient can hop :-)) and the doc palpates his abdomen and Bill says ouch! on the area over his pancreas.
I really have been trying so hard to keep it together and stay positive, but as the options dwindle, hearing that ouch just about made me lose it. We haven't gotten results on any pancreatic testing (e.g., lipase or amylase), but I don't know what we'll do if he can't get into this study. The dr. said he didn't think it was his pancreas, but of course now I've gone from elation at getting so close to the new drug to despair. All in the same doctor's visit.
I don't know exactly why I'm writing this, other than I need to talk about it and as you all know, not everybody wants to hear it.
Thanks for letting me vent.