Marlene,
Thank you! I'm remaining cautiously optimistic.
Pvinod,
You should definitely read the article Marlene submitted to understand the basics of the treatment. It is not new, but to my knowledge, Johns Hopkins Hospital is the only facility that uses it as a first line immunosuppressive treatment.
The idea is that, as opposed to using ATG, to specifically suppress the t-cell lymphocytes, which attack your bone marrow cells, high dosage cytoxan suppresses all white blood cells and reduces the number of white blood cells to zero (my total wbc was < 50 for about 35 days). The thinking is that the bone marrow cells are able to recover and create lymphocytes that no longer attack the bone marrow. Here is a youtube video illustrating the idea
http://www.youtube.com/watch?v=w8-jx1dtg0U .
High Dosage Cytoxan is given via IV over a 4 days. The dosage is dependent upon height and body weight. Response rates are similar to that of ATG. It's hard to really compare the two, because a lot more people undergo ATG than Cytoxan. There are many risks involved. I evaluated all risks with treatment vs the risks involved with
not being treated. Response typically takes longer than ATG. This means I spent more time without an immune system than I probably would've had I gone with ATG. The major risk was becoming infected while having no immune system. Relapses do occur and so does clonal evolution, but from everything I read, the chances are lower than that of ATG. I am not a Dr and I cannot say for sure. If you'd like the specifics, you should read his preciously linked study and reach out to Dr. Brodsky.
I can speak more intelligently as to the actual high dosage cytoxan treatment at Johns Hopkins. I can speak to the process, what to expect, how I was treated, etc... There is a special outpatient area of the hospital that saw and examined me everyday while I was immunosuppressed. I was assigned to a subset of Dr's and nurses that were familiar with my records, back ground, and diagnosis. I was transfused when my numbers dropped below a certain threshold and I was given prophylactics daily for both bacterial and fungal infections. I strongly believe that the supportive care at the hospital is what makes the difference. I chose the treatment that was right for me and moved across the country specifically for it.