Posted 04 February 2016 - 11:05 AM
Pat, I had to laugh at your post because it describes exactly what I feel with every lab. Haven't reached that "normal" result yet, but I'm sure I'll feel something is terribly wrong. Ha,ha! Due to some difficulties, I was having weekly labs for years, then just two months ago, I finally was able to go to once a month. At first I was so excited about not having to get the labs done, giving my veins a rest, using that time for something fun...then I started to stress about the "what ifs". A month is a very long time. So anxious waiting for those results and in the end they were no worse or better. This month, I've enjoyed the freedom, but now starting to get a little worried about next week's labs. You would think it's a PCR test or BMB result, I'm going to be waiting for! All those years of weekly labs spoiled me into a confidence that if anything was wrong, I would catch it in time. Now I need to find the same confidence in the monthly labs. I think I would flip out if my numbers went into normal range...even though normal is normal.
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)