Stem Cell Transplant is a MS-treatment that is not available in Norway at the present. There are a lot of hospitals worldwide offering this treatment, among them Karolinska in Stockholm, Sweden, and Heidelberg in Germany.
It is important too be aware that there are two types of stem cell treatment available: Stem cell injections and stem cell transplant. In both cases they use your own stem cells, but the rest of the procedures are very different.
Stem cell transplant is based on a process including heavy chemo therapy erasing your existing immune system, where the stem cell transplant is building up a new immune system, free of MS. Its like rebooting a computer with a lot of bugs, instead of running virus programs 🙂 The chemo is essential here, there is not possible to be rid of MS just by using injections of stem cells.
A lot of my knowledge about this is based on the blog by George Goss.
George went through this treatment at Heidelbergin december 2009, and his 2-years update is very encouraging for us wanting this treatment: His MS is gone, and he has almost fully recovered from the MS-damage. I recommend all of you interested in this treatment to read all of George’s blog – they are informative and easy accessible 🙂
Very short description of the treatment
You start by preparing the growth of your own stem cells, by injecting growth hormones for about a week. Then you go into hospital to harvest a sufficient amount of stem cells. They are then treated in best possible ways to be ready to be put back (washed, centrifuged, dried, polished…)
In the meantime, you get 5 days of heavy chemo therapy – 1-2 different cocktails each day – to completely erase your old immune system, especially the MS-gen on the T-cells. Then you rest for a day, before your own stem cells are re-inserted into your body. This is actually necessary to stay alive!
After the transplant, you need 5-25 days to recover, you will obviously be very vulnerable with no working immune system, until the stem cells has begun working.
This is a short description of the process from Feinberg School of Medicine at northwestern Univeristy in USA.
After the treatment, your immune system is like a newborn baby, and you are very vulnerable to infections. There will probably be a period of about 3-4 months before you can interact normally with other people.
Being newborn again, I am hopeful that I my skin will be smooth, my hamstrings flexible, that I will be able to do the full split, getting rid of the grey hairs….. The last part is probably the only thing guaranteed after chemo 😉
What do the stem cells do?
They are so called “naive” cells, meaning they can develop to any kind of cell. The magic of it, is their ability to evolve into exactly the cells you need. They are both building a new immune system, and re-building the destroyed myelin in the nerve connections.
- By erasing the old immune system, you erase the MS.
- By getting the stem cells to develop a new immune system, you stay alive.
- By getting the re-myelinization, you “rewind” previous disability.
So why isn’t everyone doing this?
This is still a new treatment, and doctors want more clinical data and trials to document the effect. In Norway, neurologist describe this treatment as “experimental and not approved“. There has been a significant mortality risk in this treatment, and there is still need for more documentation on percentage of MS stopped and percentage of recovery.
What are the numbers?
It’s difficult to get consistent numbers to document the effect on the different types of MS, since there has been trials mostly based on people with aggressive MS.
By now, there is an estimate of 500-600 people with MS who has received this treatment world wide. In the beginning, there were naturally people with very aggressive MS who took the risk of this treatment. The estimate now is that RRMS patients have very good chance (nearly 100%) of a completely stopped MS, and 80% experience significant reduction in previous damages.
Yes, the treatment has an until recently unaccepted mortality rate. This article in Wikipedia is taking into regard that a lot of diseases treated in themselves has a higher mortality rate, and that the patients condition will have influence on the result.
718 patients treated between 2000 and 2007 at Mayo Clinic had a 100-day survival rate of 99.5% for patients with low-risk myeloma and 98,9 % in total.
This is a short report after a study conducted by Dr. Richard Burt in 2009, where 21 patients with early MS was treated with stem cell transplant. After 4 years, 17 of them showed improvement 🙂 Notice the significance of this meaning the treatment was done in 2005, thats seven years ago – seven years for developing even better treatment.
But of course – statistics are the “law of the big numbers”, and 21 persons are not big in this respect.
Disease-remitting effect in all trials
This is a clinical rewiev from the Journal of the American Medicine Associaion. One of the conclusions are: “While all trials performed during the inflammatory stage of autoimmune disease suggested that transplantation of HSCs may have a potent disease-remitting effect, remission duration remains unclear, and no randomized trials have been published.” The fact that there are no randomized trials, could be this: A randomized trial is a trial with two groups – one group receiving the medicine, one control group getting placebo (sugar pills). This a normal routine to ensure that the medicine is working better than the placebo-effect, and normally you would not want a medicine that is not tested against placebo.
My youngest son gave a very “to the point” comment on this. “If the control group are not receive the stem cells, and the stem cells are necessary to stay alive – will there not be difficulties recruiting people to the trial?”