I haven't posted in quite some time. It's now been almost 5 months since Alex's BLA. I had really hoped things would be better than they are at this point, but I can't really complain, or maybe I can....the weight loss stopped as quickly as it started. She gained 15 pound at the time of surgery and lost those over the past 5 months, but she hasn't gotten any lower. Her energy level is still bleak; she is losing a lot of hair, and having trouble with concentration. She has frequent headaches and has been having some GI pain.
We did run some labs and it looks like her female hormones and thyroid are tanking. Considering these are hormones produced by the pituitary I think she is going hypo pituitary. I was really hoping we had years before this happened. Anyway, we have a phone appointment with Dr. F. this weekend. I'm hopeful he will start her on some additional meds that will help out.
We went to UCSF on Friday for the yearly follow up MRI. We didn't see a doctor so I'm not sure how that is supposed to work. Dr. Kunwar ordered it for us, but they said we didn't need to see him. I sent the request to get the MRI on disk and to get the written reports from both radiology and Dr. Kunwar. Dr. F. had suggested prior to the BLA that if we went with a BLA she should probably have radiation as well, since the tumor was still visible on MRI a year ago. I've ignored the idea up to this point, but now I guess we will see what the new MRI looks like.