Hi Matt! I never had the stem cell transplant, BUT, I read your story on your profile and I want to let you know how amazed I am with your strength (intellect and emotional) and the fight you went through to get yourself better. I admire how you placed your children above anything else and that motivated you to get out of the slump you were in.
I am so happy how things turned out for you.
Are you still doing ok?
Matt, I'm pretty sure you are the trailblazer here with the stem cell transplant. We have talked about it a bit, but as you know the MS has to be nonresponsive to everyhting else before the docs will talk experimental treatments.
It's a topic I really am very interested in learning more about.
My friend is having this done to treat Guillain–Barré syndrome. I knew they were doing research about Stem Cell Transplants and MS but I didn't think they were actually doing it yet.
We'll keep this around the 1st page for you, Matt.
Have never seen anyone to date come along who has had the transplant. I hope that doesn't discourage you from staying :(
Lu - not always the case. Progression w/out the trial and error of traditional DMDs applies at times too. Key is their acceptance and the criteria they are using at the time (though we know how that changes) for trial study.
LisaJF; Thank you for all your kind words! It was a very sad time for me, and indeed, my girls were the only reason(and Dr. Burt's GREAT work) that I made it though. To this point, I'm doing pretty well! Still have memory problems, and sometimes I'm very fatigued, but I refuse to submit to MS!! I guess it's just the stubborn IRISH in me!! hahaha Hope you are well!!
Lulu54; They had me on a whole bunch of crap in the beginning! Nothing was working, and the MS was progressing so fast, that if they had waited to try ALL the meds available, there would be nothing left worth saving!?!? So you were right, about the protocal of exhausting all meds, but I think, due to my age(29), physical conditioning, and healthy lifestyle, I was a very good chance for them to succeed?!?!?! I'm SO GLAD, and GRATEFUL that the chose to take a chance on me!!
sslowe; I don't mind the questions at all. In fact, I'm very suprised to find out that so few transplants were done to combat MS. I hope they re-start the program SOON, if they haven't already!!
My name is Alyssa, I don't have MS but post on here because I had many ms like symptoms but eventually when I got very sick and saw a competent dr (in the ER no less) I was diagnosed with Multiple Myeloma, a rare blood cancer.
I had a stem cell transplant 11 months ago to treat my cancer. I am in remission now. Still recovering from the transplant, or maybe I'm recovered as much as wil do? I'm also happy to be here and thankful I had great care for my transplant and my transplant dr (a top MM researcher in Canada) agreed to keep me on as her patient long term
Fatigue is a huge issue post transplant. I was so weak I could barely make it up the steps to our second floor apartment. Finace would walk behind me and give me a bit of a push. Also I have had many infections like flus and sinus and ear infections but that could also be my cancer.
transplant is my best chance to live without meds for a while.
I wander if we had similar conditiong (ie high dose chemo) for the transplant? Did you have your own cells or a donor?
Feel free to ask me any chestions
There are trials going on at OSU for this procedure - I've not heard any recent updates on the status. There were, I think, at least 2 patients in the program.
Glad to hear your doing well Alyssa!! They first started my transplant, by giving me shots in my stomach every day with some drug that increased my stem cell count. Then, after 5-7 days of this they stuck a HUGE (did I mention how BIG it was hahaha) needle in my jugular vien. The blood then went though a twirly machine that seperated the stem cells from it, and then pumped it back into my arm. After that they sent me home for 2 weeks while they "cleaned" my stem cells and froze them.
When I came back, they put me in a double sealed room, and gave me Chemo for breakfast, full body leathal radiation for lunch, and chemo for dinner, for 6 days!! When the blood work finally came back from the lab saying that I shouldn't be alive, they reintroduced the "clean" stem cells and A LOT of drugs, and prayed for the best!! 19 days later, I went for a walk!!! 3 days after that, I went home. 6 weeks later, I didn't have to take anymore drugs, because my immune system was fully functional. No more tests for a year!!
It's been ten years now! Back then, the Dr. said if I make it ten years, there is a very good chance that we beat it!! I am not completely back to "normal", but I can walk/run/SEE/remember things . . . ya know, all that boring stuff healthy people take for granted!!!
I wish you all the best of health and luck with your NEW chance on life!! Make it count!!
Matt, your story is fascinating, and your courage and determination are beyond admirable. I'm so glad you've joined our forum.
Do you know whether you were Dr. Burt's first patient for this procedure, or maybe first where the disease was MS? Maybe you really were the experiment that paved the way for trials on groups of patients later on.
Anything you know about that part of things would be most interesting to read.
We talk so often around here around risk VS benefit - your story fully illustrates that choice. I am so happy to read that it worked for you and I know that Alyssa is going to also benefit.
The work done for one disease really can piggyback/carryover to treatments for other diseases and its quite possible that is the case here for the two of you.
If anyone else is interested in learning what trials may be underway with autologous (self-donated) stem cells, you can find them at clinicaltrials.gov.
I think this link will provide the MS trials (plus a few more!)
Hi Ess. I was not Dr.Burt's first patient. He did the first transplant in 1997. He performs the procedure on all types of auto-immune diseases, with some degree of success!! You can google Dr. Richard Burt at Northwestern University Hospital to read up on all the things this brilliant man and his equally brilliant staff can do.
I remember when Dr. Burt told me that I would only have a 33% chance of survival if I chose to be in his experiment. That took a day or two to think about. But, I looked back at my life, smiled, and realized I still had a lot more to do!! I didn't want to look back at this time in my life from a paralyzed state and WISH I had done something. So I called Dr. Burt and we finished all the arangements to get me out there! As I shook his hand, I told him to learn as much as he can from what he was going to do to me. So that if I did well, he could do it again, and if I died, he would know what NOT to do!!! haha
I wanted him to be able to beat it in the future! So that if my daughters ever got it, they would have a better chance!
Hi Matt, yes my procedure was similar! I also was my own donor, so I did the daily shots (or I think twice a day) and had such intense bone pain as my marrow generated those little stem cells! And the collection was no picnic with the big needles in each arm for me... She taped my arms to pillows so I could not "move" haha.
The chemo was intense, but I only had to have it one day as I already had enough chemo before the collection of stem cells. They just gave me one "lethal" dose. The full body irradiation isn't done so much anymore Myeloma causes bone tumors so they sort of use it for that if and when.
I think I was in the hosptial for just over two weeks. The worst of it was the side effects from chemo as you likely had (nausea, vomitting, mouth sores, no hair, all that stuff) I'm doing well now still dealing with low blood counts, but this can also be because myeloma affects the immune system. I catch every bug that goes around and might be starting IVIG treatments to help fight the frequent infections (just had a month of fighting double ear infections)
I'm glad that you are doing well! I am also glad of my choice fot the stem cell transplant. I feel so much better a year later, back to what a 30 something should feel like I think!
I have MS and had a stem cell transplant with my own cells. It was an amazing experience that I would do again in a heart beat. I continue physical therapy 3 days a week and am beyond determined to beat this. I went from functioning at 5-10% to 80% and still improving.
Just saw the story of a Chicago woman who is MS symptom free because of stem cell transplant. Here's the link http://abclocal.go.com/wls/story?section=news/health&id=6656336 . Why aren't more Dr's recommending this for treatment? It sounds like it actually works.
Andrea, that is great news. I am a firm believer that this therapy will work and you are proof it is worth a shot. Autologous cell donation - taking our own cells for reproduction - is such an amazing process.
When you feel up to it, I would love it if you would start a new discussion and tell us all about your procedure.
Thank you for popping up this discussion.I'm thrilled it's worked for you! I'm sure you can attest that it's not for everyone, especially considering what your body goes through before they reintroduce the transplanted cells. Though I believe the process has changed a bit from years ago. %5 to 80% woo hoo! So happy for you :)
Like all things MS, not everything works for everyone, and then on top of that not all MSers are the same. And, it's grueling, not everyone can survive the transplant - all criteria has to be met, etc. I'm sure Andrea, Sumerlvr, and Nicay can speak more to the process. And, their condition pre-transplant.
I am 43 with multiple sclerosis. I was gearing up for a stem cell transplant in Chicago in 9 months. I stopped Tysabri. (Have to be off Tysabri for 9 months before transplant.) But within 2 months, I was diagnosed with breast cancer. It has almost been 2 years since diagnosis. Oncologist believes cancer is gone and won't come back. (Had double mastectomy and chemo.) At the time of diagnosis, neurologist said I couldn't have a stem cell transplant now. MAYBE.....MAYBE in five years, he said. UGH!!! I'm going to ask again at next visit. Any thoughts????