Talked to the local heme/onc following my case here, and even though he referred me to one of the best experts on my weird disease in the nation, he freaked out. He’s scared that I am way too fragile for the transplant having, if you believe it, anaphylaxis almost weekly again. I can’t eat, I barely tolerate TPN, and some days I have to survive off of IV saline alone. But here’s the deal and why I am in love with hematology and oncology in medicine, these doctors are willing to take the risk.
risk benefit ratio for a 24 year old getting an allogenic stem cell transplant seems like a very weird question to ask; yet in my situation it actually makes sense.
Risk:
- treat and die from complications
- refuse to treat and die
- try other treatments but none work and die
Benefit:
- treat and get my life back
- treat with other chemos and go in and out of remission
Basically, if you have not noticed I fit into the we need to treat or I am going to die category here. It has been FAR too long to be this pancytopenic, and to be getting far worse than better since chemo. My bone marrow is functioning at <10% according to Mayo Rochester. I have bone marrow failure, but likely not from 2-CdA I ended about 7 months ago now.
Yet, though there is local heme/onc push back, he has referred my case to another local heme/onc, and then someone at M.D.Anderson. I also have a team being put together at the NIH now because of family connections. I am having the best of the best looking at my case, and I have no idea what they are going to advise.
I just have that gut feeling once it is realized that I have been suffering for so long and what I have is aggressive because I have had it so young, an allogenic stem cell transplant that could cure me is something I am willing to do and fight through.
I didn’t ask for one by any means. If there was any other choice to cure me or give me a quality of life worth living I would take it in a heart beat. But every day I continue to get sicker and sicker. I actually am dying.
So that’s the stem cell diaries tea for now. Updates as I learn more.
Lauren Michelle
The Sleepy Chemist 