Today I get two units of red cells and I'm about half through the first one now. I've also had more Lasix to help shed some of the now 25 lbs of water weight I have gained since last Friday, but I can't tell it's doing very much. I think I need a higher dose. This is in addition to the anti-fungals, anti-virals and the plethora of antibiotics I'm taking.
All the stuff on yesterday's long list of things got done. When the nurse tried to use my new picc line to draw blood last night it didn't work. This is not a good thing. I had to get stuck to get last night's blood cultures. Things go in just fine, though. My nurse today has flushed it and did something called (I think) TPA and one side drew OK about an hour ago. After I get done getting all the red cells, she's going to check it out some more.
I have the nicest infectious disease doctor. She just stopped by to see me. They were not able to identify what was growing from my blood cultures, so they've sent them off to Mayo Clinic. It will likely be four or five days before we hear back from them. Hmmm. I didn't think to ask her if I would have to stay here till we get the results. But I'll check with her tomorrow.
That's all the easy stuff. The next bit is not so easy.
I'm now nearly through the third cycle of Dacogen treatments and am not getting any better, My counts are lower than when I started it. The fourth round was scheduled to start on the 16th. That is not going to happen.
After trying both Vidaza and Dacogen, the only other choices for this disease are either transfusions or a bone marrow transplant. I could get transfused for a long time IF I had a white count. And perhaps if I'm off the Dacogen for a while, it might finally come back some. We'd just have to see. But I can't wait too long, as I've been neutropenic since 17 December.
My doc doesn't feel like we can start another round of Dacogen until I get something better going on, so when I get well enough to get out of the hospital (and we don't know when that will be) he wants to make an appointment for me with the bone marrow transplant team at the Sarah Cannon Cancer Institute in Nashville. I am not sure at this point if there will be a fourth round of Dacogen or not. My doc will be consulting with them, too and it's likely the transplant will have to be sooner rather than later.
So this is a lot to think about. I'll just keep on keeping on until I find the answer.
April 2017 Newsletter
5 hours ago