Get support and information about Stem Cell Transplant. Topics include: causes, clinical trials, complications, family issues, living with a Stem Cell Transplant, prognosis, research, surgery, treatments.
Hi and welcome. This is an excellent question. The autogolous stem cell transplant procedure is being studied at a number of centers. It looks promising but it is unproven at this point. Plus there is a tremendous risk involved with this procedure - they have to first wipe out your immune system entirely before reintroducing the stem cells. This leaves you susceptible to any and every germ that comes your way - even in the hospital.
There are places outside ofthe US offering to do this stem cell transplant, but I would be very concerned about having this done anyplace but close to home.
I do think stem cell transplants hold a lot of promise for MS and a whole lot more diseases.
The thing about stem cell transplants is they do not reverse damage they only slow progression. If someone is in say a wheelchair they will still be in a wheel chair after the transplant. Because they are risky everyone is not a candidate. There have been some people who have had them on the forum.
I will take many years of research to know if stem cell therapy helps. It would take many more after that to establish a cure (based on symptoms not returning). It would take even longer for a invasive and potentially deadly treatment to become a first line treatment.
There are success cases that you can read about on the net. I'm not versed on the trials, but most I've read are out of Chicago with Dr. Burt in the lead.
I had one of his success cases join us not so long ago to tell his story. It worked for him. He is doing well, but he will tell you 1st hand accounts of how if he was not young, in the best shape of his life before his paralysis, blindness, and so much more, he may not have made it through the transplant.
At the time he had his transplant done they really depleted the body before re-introducing the cells. It's very expensive, not for everyone for many reasons, and I feel it will never be one of the mainstream choices simply because it's very dangerous. You sign your life away if you are even accepted into a trial.
I have not seen him on our forum lately since someone actually questioned the truth in his story. I know him, he's a friend of mine, and I seen him when he was sick. He was a very, very sick man. Couldn't walk, talk, or see and going downhill fast.
Bear in mind these are from 09 - more progress since then, but knew where these vids were and though you could appreciate.
With this series - please note there are 3 parts to this lecture:
As someone who has had a stem cell transplant I can tell you it is defiantly not easy! I'll go over my experience (for myeloma treatment, not MS, but I had an auto transplant)
The problem with Myeloma is that all meds eventually stop working, and since many are similar to one another, you run out of options. So doctors like to do the transplant first, and then save some of the meds when you relapse. If I wanted to do maintenance I would be on thalidomide right now, and I’m not ready to be on that drug indefinably (too many side effects)
The stem cell procedure involves the collection of cells (you need to take a medication called Nupegon to stimulate your bone marrow to make stem cells) which sounds easy but I was in severe pain in all my long bones (thighs, hips, ribs, back head), taking pain pills that were barely touching it. Then after a week of this you are hooked up to a dialysis type machine to collect the cells. You can not move or risk the large needles moving. The nurse literally taped me into the chair and said don't move. This lasts several days until you get enough cells.
I had a "moderate" cycle of chemo before my stem cell collection normal chemo side effects nausea / diarrhoea and all my hair fell out from it. (had done 4 other cycles of another chemo before to put me into a remission)
For the transplant I was in the hospital two weeks, and then at home (didn't move of the couch much) with homecare nurse for another 4 weeks. I was so weak I could barely walk up the stairs to our apartment; my fiance would push me from behind, or pull my hand up to the second floor. They say you will be weak, but I really had nothing to compare it too. I had to force myself to go out for a coffee at the café downstairs or sit in the park across from our house. Then I would go home and have to lay down.
The high dose chemo aside from killing off your bone marrow, kills all the quick dividing cells in you body, so from my throat through my whole digestive track was damaged (it heals over time). So my throat and tongue sloughed off, with ulcers, then later my bowel did the same thing (really bad colitis). My kidneys lost their ability to concentrate water. So to spare the details I spend a lot of time in the bathroom. My blood pressure kept nose diving so I barely avoided ICU because the transplant ward is critical care (at my hospital) and the nurses / doctors were able to deal with it but did have the ICU team coming to check on me. I had oxygen at one point. Had allergic reaction to the anti nausea meds (like a weird seizure) so I could only take a few that were not very effective (gravol)
I have had some infections afterwards, about 6 ear infections since my transplant as my immune system is compromised. I had a 24 hour stomach flu that put me in bed for a week. And many colds / rashes.
One year later I am still dealing with some secondary effects. Big issue right now is chemo menopause at age 33 (really bad hotflashes, several times an hour) and possible thyroid disease from the high dose chemo. Waiting for my blood work to come back so I can hopefully start hormone replacement.
But, regardless of all the bad stuff, this transplant saved my life. And I feel better now than I have in at least three years, the whole time I was sick with cancer and the doctors could not figure out what was wrong with me. So for me the transplant was worth it, and if it comes down to it, I would do it all again to get more time to live med free and feeling well.
I think I got fairly lucky in that I was young and mostly healthy before going thorugh it. A colleaugue at work family member did an auto stem cell for lymphoma but it has not stopped his disease, and some folks on my other cancer support group did the transplant and it did not stop the myeloma from progressing (might have stalled it for a few months).
I am sorry the stem cell success Guy left. He was a success. I guess I put it wrong on this thread and I am sorry. I apologize. I do not think I ever questioned the guy who had the stem cell. He did have a good experience.
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