It has been awhile. Just wanted to narcissistically lick my wounds in a public manner. I have passed my 2 year mark from diagnosis, still have Ph+ present at 22% and my BCR-ABL/ABL ratio is 2.5578 with 5.9689 representing the median for newly diagnosed per the lab used. I have been on Dasatinib (Sprycel) for 9 months since switching from Gleevec. A mutational analysis did not produce results b/c of a lack of RNA amplification. Still working with my doc to see why the testing did not produce a result. It may be sample size more than anything else. I finally saw a national expert, Dr. Shah at UCSF for a 2nd opinion (paid 500 bucks out of pocket) and saw the Standford BMT docs to see what they thought. Plan is to see if I can get to less than 7/20 Ph+ by year mark (September) or a 2 log reduction. If I mutational analysis identifies a mutation, it is considered a good thing in my case since there is now coverage for most mutations. No mutation = greater likelihood of BMT, or clinical trial with hedgehog signaling drug, or Ponatinib (Ariad). Feeling down/anxious but also appreciated and encouraged by Beth G's great results and 2 year mark. I hope this info is useful to some. BMT mortality rate of 15% is scary but perhaps a bit better than what I previously thought it was. 20% of those that survive after 100 days from BMT will get chronic Graft-Versus-Host-Disease which is also a bit scary. Given all of this, it is wise to play with drugs as long as I can but somehow try to avoid disease progression.
On the positive front, I just rode 100 miles around lake Tahoe in the freezing rain to help raise 6.8 million dollars for LLS. It was a bruiser but what a wonderful event. I will now ride for Livestrong in Davis, CA in July to also raise funds. Got to keep exercising and keep hope alive for all.
I wish all the best in CML land.