Hi Everyone - thought I would give my update incase anyone has any similar experiences to share. It has been a journey for me.
Some history:
Was diagnosed in late summer 2012 at age 38 and was on Gleevec. Unfortunately due to mutations progressed to blast phase in Dec and went through 6 months of Hyper C-Vad chemo. Did not (and have not) found any BMT matches.
After chemo (developed severe neuropathy waist down on both legs) was on 70 mg Sprycel. Undetected and tolerated it very well until early 2018 when I had severe pleural effusions . Reduced to 50 then 20 but still the case. Developed severe PAH and in Oct had to stop all TKIs. Been on PAH medication since and feel much better. Oct through Dec PCR went positive - 0.04, 0.11, 0.15 (after over 5 years of undetected). Started Bosutinib at 100 then 300mg in early Jan. Was feeling great - PAH seems to be in control, blood counts looked fine and was in a optimistic stage in life. Unfortunately my Feb 15 PCR yielded at 15.0.
Now increased Bosutinib to 400 then 500mg. May consider Ponatinib as a option given its adverse effects. Looking at other immunotherapy options - perhaps leading to half-match BMT which again concerns me.
just wanted to share my journey. Has been a shocking and depressing few days and trying to build up the right attitude and strength to perhaps face another tough leg in my journey.
Thanks for listening!