Calling anyone who has had SC treatments

[JerryD]

I would love to read something from those who have successfully undergone stem cell replacement therapy. I know there have been a bunch of people who have been successfully treated, but aside from George Goss, who I consider to be a courageous pioneer, I have not seen or heard of anyone. Come out...come out ...wherever you are !

[Cate Power]

I found very informative report from ActiveMSers publisher, Dave Bexfield, who participated in HALT-MS study.

[Cate Power]

Note, risk of death reported in Bexfield's video is high w/ 10% fatality. I am unsure as to basis for the 10%, but a 2009 article related to the HALT study provided as follows:
It [is] important to understand that all aggressive therapies hold risk, and that is true for hematopoetic stem cell transplantation. In 2002 the European Group for Blood and Marrow Transplantation (EBMT) published the results of their study of 85 subjects treated. There were seven deaths in that study, five due to toxicity and infectious complications, two with neurological deterioration. The risk of death of any cause at 3 years was 10% (Fassas & Kimiskidis, 2002). This group of patients had failed standard therapy and had severe disability.

[JerryD]

Cate,
Your info from Europe is 10 years old. I figure something has improved by now. I realize Dave's info is newer but have not heard a thing about the other 3 medical centers that I mentioned.
George Goss and I have exchanged emails recently and his improvement is 'miraculous', to say the least. So, as far as fatality is concerned, you can't tell there is any from my investigation. Hence the reason for this thread.

[JerryD]

I just read a post from George Goss today and he said mthat the HSCT that he had in Germany had no fatalities reported. That is 0 fatlities, so wherever the numbers came from that were reported here are in direct opposition to those. And I am inclined to believe George's numbers for the reasons that he chose to undergo this treatment almost 2 years ago, and blogs about his experience.
I am still looking to hear from actual people who have been treated with HSCT. Where are you?

[Mylovehasms]

facebook

they are on facebook. Ask George to invite you to the group

[Chilax]

I had the HSCT at Northwestern in Chicago one year ago. I just returned from my one year follow-up. The MRI revealed no now or enhancing lesions. My EDSS score went from 3.0 to 2.5. I have not been on any MS medication for the past year.

[JerryD]

Thanks Chilax,
I was hoping that Dr. Burt's program was having successes. Do you know if you were being treated along with other patients? How many ?I can't imagine you were alone in Dr. Burt's clinic. Have you had any reversal of your previous deficiencies ? Do you know of George Goss ? He completed his HSCT in Heidelberg U. in Germany about 2 years ago .
I am looking for any and all info I can get on this treatment. So first hand info is the only way to believe the treatment's could end this disease. Good luck and thanks for your answers.

[Chilax]

Hi JerryD,

Last year I was being treated along w/ 3 other MS'ers, 2 CIDP'ers, 1 w/ Lupus and another w/ Crohn's. My bladder (urgency) appears improved; consequently the better nighttime sleep has helped w/ daytime fatigue. Yes, I know George Goss, he is very knowledgeable of HSCT and has an awesome Blog. There is a very good HSCT Facebook group that I am a part of.

Al

[annawisept]

I'm in the Cleveland Clinic trial!

I am patient #17 in the Cleveland clinic study and received my infusion of stem cells this morning! I am anxiously awaiting the results!

[JerryD]

Anna,
I knew you guys were out there. I just didn't hear enough from any patient except George Goss. And I felt surely there are more MSer's finding stem cell therapy. I wish you the best. Good luck

[debos twin]

I am patient #17 in the Cleveland clinic study and received my infusion of stem cells this morning! I am anxiously awaiting the results!

how do you feel and where is the study being conducted

[cgarri]

11 year survivor

Jerry,

I had an autologous hemapoetic stem cell transplant in December of 2001 as part of the phase I clinical trials. I am doing great today. I've been in remission ever since. I work out four times a week trying to make a complete recovery.

It is slow work, but I've gone from occasionally needing two canes to needing no cane as long as I don't need to be on my feet more than fifteen minutes.

When I went through the trial, they warned us of a 5% mortality rate because that is what it was for luekemia patients undergoing the same treatment. There was actually a 12% mortality in our trial. That is why there was such a long time gap between phase I and phase II/III.

The current HSCT protocol for MS is much less aggresive than the 2001 protocol used to treat luekemia. The number I have heard, though I can not document, is 1% mortality for the current MS protocol.

For me it was an easy decision. My grandfather had MS, and I watched him deteriorate. Even if I'd known I had a one in eight chance of dying, I would have taken that over living my grandfather's life.

Good luck,
Craig

[JerryD]

Thanks for your response, Craig.
Now I am totally a believer and, like you, I would be glad to take the chance on HSCT at whatever the odds. I, like you, have seen many people waste away. I will not accept that fate, as long as I have breath in me.
I wish you life and health ! Thank you for reaching out ! Good luck

[ActiveMSers]

JerryD, Craig's a great guy and one of ones who paved the way for my Phase II treatment. He's a true pioneer. We've had the privilege of breaking bread together and hope to do so again.

And Cate, you'll be happy to learn the consent form all of us in HALT-MS signed listed the odds of death as high as 5% (or 1 in 20) based on previous trials. Fortunately those odds today are closer to 1% as Craig stated. The treatment continues to get safer and safer. And thanks for your nice comments,

Dave Bexfield, ActiveMSers