I see a lot of the same faces and a few new ones on the forum. Glad to see so many still fighting the good fight.
I was one of the early patients in the Phase I trial for ponatinib--I started at the 30mg dose almost six years ago. Been doing great, briefly flirted with "undetectable", but mostly been co-existing with a very low level of disease and doing great. Unfortunately, when the FDA did their shenanigans last year and we had to go to 15mg while they sorted stuff out, I lost my response. I've been back up to 30mg for the past year. When we did my BMB this year (as required by the trial protocol--thank goodness it was required), I was still showing a loss of response, but with an addition of trisomy 8 and isochromosome q17 in my leukemic cells. It looks like I'm headed for transplant. I don't have any additional mutations, but do still have the t315i mutation. The only good news in this situation is that whatever is going on was caught very early. Without the BMB, it is very possible we would have found out things were evolving much farther along in the process.
Thankfully I am in great hands--I'm being seen by Dr. Shah at UCSF and Dr. Druker has also been consulted.
We are trying a higher dose of ponatinib (45mg), which kicks my a** with side effects--mild pancreatitis, body rash, fatigue, etc. and will re-do my BMB at the end of March. I'm consulting with a transplant doctor at UCSF later this week and also heading to OSHU next Monday for a consult and to look at the trial for the new Novartis drug.
It is never a dull moment with this disease. I've had a sobering reminder that you can never take it for granted.
Hugs to all,