I got back yesterday from OSU. After 8 cycles are completed, they do interim testing, and so I had neck, chest, abdomen and pelvic CT scans, blood work and a bone marrow biopsy. Other than being a little sore where they did the biopsy, I am no worse for the wear. In fact, after they let me out, I walked downtown and among other things, found this amazing pastry shop. If you are in Columbus and find yourself with a little extra time, I absolutely recommend you go. laughlinsbakery.com/
The CT test results came back, and I now have only 2 lymph nodes in my abdomen that are abnormally large (2 cm v. >1.5 cm which is normal). While not perfect, given that the largest started out a 6+ cm, that is certainly progress.
It will take 3-5 days for the bone marrow biopsy test to come back and 7-10 for the FISH panel (a test that “maps” genes and documents defects). Given the fact that some lymph nodes are still enlarged, I’m not expecting to come back MRD- (no detectable cancer cells) but given the blood work has been coming back at .2% cancer cells, I’m hopeful I come back MRD+ (less than 1%).
Given the 17p deletion (which means I don’t make a protein that kills cancer cell) even one cancer cells spells trouble for me, so regardless of outcome, it is highly likely I will remain on meds after the trial, even though the goals was to hit us hard for 14 months and take us off. When 17p patients relapse, it happens “with a vengeance” and so I really need to try to avoid that at all costs, hence staying on the meds.
Most importantly, I’m 100% fine meaning there is nothing about my health that gets in the way of doing anything I want to do. CLL is supposed to be a chronic cancer and the fact of the matter is I’m OK with having cancer that’s manageable, in the same way that diabetes is manageable with insulin. So far, so good. I’m hopeful I’ll be able to say that for a long time.