Autologous (non-donor) stem cell transplant program for CIDP
This is a good thread, and I’d like to add a few things.
I contacted Northwestern University, and from all of their advisements, I qualify medically to enter the treatment. I was also advised that my insurance should cover 80% of the costs, leaving me about $20K+ and the extensive travel/lodging to cover myself. (I am 47, on full disability, covered by Medicare) I decided to pass on the opportunity for now, as the out-of-pocket and most importantly, the several weeks that would need to be spent 1,000s of miles away from home/family just were not right for me right now.
However, if I could instead obtain this treatment at UCLA, City of Hope or some other center in Los Angeles where I live, I would enter it right now, in an instant – that would be a great situation that I would go for right now. My belief is that will be a reality in the not too distant future.
Since my CIDP is mainly slowly progressive, and I have extensive long-lasting nerve damage from the years of disease activity, my expectations for the protocol would be to to halt the disease progression (cure the disease itself, if you will) thus affording the luxury of going off all current treatments and purely focus on long-term healing, like Pam H. is after her Cytoxan treatments. Even still, after the stem cell transplant, I’m sure I would have strong residuals the rest of my many years to come in this life, but I guess I’d consider myself “cured” of the disease itself. This reality gives me some assurance fr my thought to sit tight and wait a bit until the treatment is more widespread for autoimmune applications. Unlike Alice, I’m not in an acute, rapidly declining state that really demands rapid, aggressive intervention. She did the right thing aggressively moving to receive the treatment.
Since CIDP responds to immuno-suppression, it totally makes sense that immuno-ablation would likely produce lasting remission, or cure.
As I understand, the [COLOR=”black”][COLOR=”Black”]non-donor[/COLOR][/COLOR] autologous stem-cell protocol is very safe, and proven as a main-line treatment for many blood malignancies, like non-hodgkins lymphomas, etc, when the disease recurs after chemo. It is not considered experimental for those applications and it is done frequently, it is considered experimental as applied to CIDP (as well as other autoimmune applications)
It is Allogenic, or donor transplants of peripheral blood or bone marrow-derived stem celss that carry the greater risk of things like donor v. graft rejection, the rigors of more extensive pr-transplant conditioning, life-long immunosuppression, etc.
Frankly, I fully expected and am not in the least bit surprised by Alice’s response to the protocol. I would have been shocked if she would not have had this level of response.