Well, I am still CCyR, but my PCR has increased. I went from .135 to .283 If I were MMR and had a bitty flux, I don't think I would worry so much. As Sprycel has not been the miracle drug that immediately brought me to MMR, I am scared that this may be the start of us parting ways (been on the drug a year). I am still within the 2 year mark for all the "lovely loss of response" living nightmare to happen. I was soooo hoping to make it past the 2 year mark. And I was so smug in thinking that my dropping PCR would be MMR after this last PCR and BMB. Perhaps this higher PCR value is why my blasts have also increased? I have also been getting terrible pains in my hips. Hate to think these are the leukemic cells proliferating. I believe the BMB report said there was an increase in CD34. God, I HATE leukemia.
I had a mild anxiety attack yesterday and almost started crying. Excited that I finally got the email from my onc, I expected the best. The number really hit me like a ton of bricks, esp when my onc wrote, "Great! It continues to go down." She had mistakenly looked at 2 PCRs ago, (screw the positive attitude stuff, I am totally becoming a not-yet-elderly, female curmudgeon now). I found out while I was at the hospital all day waiting for my husband to come out of surgery. That was also major stress. I so wanted to tell someone, but I couldn't get a good connection to the Internet on my phone. My therapist doesn't understand PCRs. I could not tell my husband after recovery. That would be a tad insensitive. But I was just about jumping outta my skin thinking "this is the end". And I couldn't help but think all day that it was so weird not being the one in the hospital. Coming from having babies to getting CML just after my second child turned 1, it seemed like I should be in the hospital bed.
My husband was moved to the orthopedic floor (he had shoulder surgery for a shattered anterior glenoid rim,--i.e. the front of the scapula--slipped on my 4-year-olds Jeep--WARNING! Having children may be hazardous to your health). Ironically, the floor also housed the "Oncology and Stem Cell Transplant Recovery" wing. How is that for a bad omen? It hit me like a ton of bricks when reading which way to turn after exiting the elevator (imagine foreboding movie music (or the screeching violins from Alfred Hitchcock's Psycho) playing while zooming in on the sign, then on me, then on the sign and sorforth..). Left to the orthopedic unit, and right to oncology. Again, it felt somehow wrong not heading to oncology (my new "normal"). But I turned left. And I felt like an invader in the bone ward; misplaced. I soooo wished I just had a broken scapula or leg. I would take a life-long limp over leukemia.
I wrote my onc and asked if we should do a mutation test, but she suggested another PCR next month to see if a trend develops. It is going to kill me to wait so long. I checked my email like a maniac waiting for the the PCR results to come in. To wait another month is going to be very hard (this reminds me of a song...skip to 1:29 on this video if you want or watch the whole thing, http://www.youtube.c...ch?v=fkLBVtFI3I I guess this is how we should be thinking about time. Then we all shall all be able to live a long life.).
Anyway, I get that there can be a half log to 1 log margin of error (and as fuzzy as my math is, I don't believe my numbers increased by even half a log). I don't think the lab changed its machinery, but I can check. I am doing better today, but I just feel horrible. I really thought I would see a lower number. God bless this board and the LLS. This is the first time I have been able to say anything to anyone. Sorry this is so long. I just have to get it off my chest. Have been carrying it inside for over a day now. I am so grateful for the LLS and all of my BIF on this board.
All the best to everyone,