Alexandra wrote:Dear Georgegoss,
I had a discussion with my neurologyst yeasterday about stem cells transplant and although against it at the beginigng, he listened to me. He had some questions and hope you can help us with obtaining the answers:
- did you perform an MRI post transplant, after the one year period? if yes, what did the MRI show?
- do you know the statistics of this treatment: how many deaths, how many trials, success rate for this clinic and in general
- who was the doctor that supervised your case?
Thank you for your time to answer my queries. I think my neugo is considering this and will support me if we have more data. He is not sure if I should go for it since I was newly diagnosed and at the begining.
wish you lots of health
Hi Alexandra,
You ask good questions for someone that would like to see the evidence for Hematopoietic Stem Cell Transplantation (HSCT). Luckily there is a lot of clinical data that is very consistent. I compiled a lot of useful reference information that should fill in much of the information you seek and should be useful that can be found on this page (and perhaps you can direct your neurologist here, as well). . . .
http://themscure.blogspot.com/2010/06/s ... rence.html
Some summary points to state them explicitly. . . .
- I had an MRI both before and (ten months) following my HSCT procedure. There has been zero additional lesion activity on my MRI scan. So things look stable in the brain images, but I will continue to have yearly MRI scans to confirm this. But I think the more important measure of success here is EDSS. Pre-HSCT my EDSS was 3.5. Today (at 15 months post transplant) it is nearly EDSS 2.0 (just slightly higher, but not by much). And I continue to experience gradual improvement over time so I 'hope' to eventually acheive EDSS 1.5. I think it is possible, although not quite there yet.
- The original phase I study done way back in 2000 had several deaths because they used (the now understood unessesary) Total Body Irradiation (TBI) for immune ablation. The current evolved protocols do not use TBI and only use gentler chemotherapy and there have been zero (absolutely none) treatment-related fatalities. So it has evolved to become a relatively safe procedure (although there is always a finite amount of risk with a serious procedure like HSCT with a risk of death probably around less than <1%).
- Trial data and statistics are listed on my references page. I hope you can direct your neurologist to this same references page. The data is quite volumous and speaks for itself. Based on the phase II trial data, early RRMS cases see 100% halting of MS disease progression and better than 80% of treated patients have reversal / improvement of existing symptoms by at least (or better) of one point EDSS. I would only add that all of the clinical data is very consistent which is the gold standard of scientific proof. As of today there have been more than 500+ MS patients that have been treated with HSCT and is currently in phase III clinical trial at NWU in Chicago.
- As far as my own treatment, the doctor that oversaw my HSCT is a German oncology specialist at Heidelberg University Hospital (Dr. Marc-Steffan Raab, formerly with Harvard's Dana Farber cancer institue). I think I was his first autoimmune treatment case. But actually it didn't matter in my case because the HSCT treatment protocol was substantially similar to that of cancer stem cell transplantation treatment and everything worked out well with no unexpected acute side effects.
Feel free to send me a message if I can assist further. I'm happy to share whatever info I have learned, if not already listed in my blog.
My very best wishes for your good health!
- George