Posted 27 February 2016 - 04:50 PM
So sorry you're feeling frustrated Snowbear. As Kat mentioned, CCyR is the high bar to reach. You say you lost it in Dec, but not by much. Surprised they didn't repeat the fish. If it's any consolation to you, I lost CCyR after 9 months. We're hoping for negative on the next one. Typically, they stop doing fish after you reach CCyR, but they kept testing me. Maybe, had they not tested, I would never even know I lost it, since my PCR stayed stable. My Onc says they see this happen once in a while and not to stress. As for the time line, it took me almost 4 years to get to my first CCyR. I'm very close to MMR now and hoping my test next month shows negative fish and MMR. That would be about my 5 year mark and ready to do a happy dance. Hang in there Snowbear! Keep us updated!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)