Quote:
Originally Posted by NLJabbari
Hi Nicole, Yashar had 2 potential 9/10 donors, both males, one in his 30's and the other in his 50's, both A+ (like Yashar) and both (CMV+) Yashar is CMV- I asked the bone marrow doctor we met with at Stanford about the mismatch as I wanted to know at which marker it occurred and she simply told me she didn't have that info :/ I thought that was strange, hmmm...I might have to speak to someone else who might be able to answer these questions
Also, I was concerned with the preconditioning protocol which I believed involved 2 days of Cytoxan and 4 days of full body radiation. The full body radiation seems too extreme to me. Did Evan get full body radiation?
Thanks,
Norma
|
Hi Norma,
I am sorry that it has now come to Yashar needing a BMT. How frustrating.
Well, the donors sound quite good so far. Male to male is best, and same blood group is also a helpful feature. I wouldn't worry too much about the donors being CMV+ while Yashar is CMV- as part of his post BMT conditioning while absolutely include acyclovir or another similar anti-viral. Evan's donor was also CMV+, while Evan was CMV-.
You are correct and have every right to seek out and be informed of where the mismatches are. I am pretty sure most pediatric patient's parents and most adult patients themselves do not seek out such detail and I don't really fault them for that because it is a very complicated read, to say the least. Plus, reputable information is not so easy to find.
Evan did not have any radiation. When we sat down with the BMT doctor, he explained that Evan would have 3 days of cytoxan and 4 days of rabbit ATG. He stated he was "sitting on the fence" about any radiation. We already knew going into this meeting that we wanted to discuss the possibility of avoiding radiation if at all possible. The doc said that because we are not targeting cancer cells, i.e. leukemia, the need to ensure every last stem cell has been obliterated is not necessary. So he left 'to radiate or not to radiate' with us to think on. I believe he gave us the choice because he knew we were well informed going in and had some opinions formed already. Once home, I began researching BMT conditioning protocols in pediatric AA in more specific detail and learned that a tri-med routine without radiation was not uncommon. I emailed the BMT doc and asked if it would be prudent to add fludarabine to the cytoxin and r-ATG in leiu of radiation and he thought it was a good idea: an extra ounce of prevention for a pound of (hopeful) cure. He said fludarabine is a great chemo agent that will target the stem cells while adding little to the potential side effects Evan would already be getting from the other two meds.
So that's what evan had. 3 days fludarabine, 3 days cytoxan and 4 days r-ATG.
Now Yashar has had AA longer that Evan did and has had, I believe, more treatments with ATG than Evan and has been on cyclosporin longer as well, so these are all things that make no two cases the same.
It would be nice for Yashar to avoid radiation if at all possible. When are his docs thinking of transplant Norma?