A bone marrow transplant to reboot the immune system? http://www.ottawacitizen.com/mobile/news/ottawa/team+Ottawa+doctors+preparing+publish+full+report/8180666/story.html
this is something that i have been thinking about the past few weeks. For me this seems to be the most effective treatment against MS. Ie. the only treatment i have seen that stops the disease 100%
Aparently there is a Dr Burt in america who is about to publish his findings in a HSCT trial (bone marrow transplant and stem cell infusion) within the next couple of months. This will be interesting because it will tell if this is just another hoax or the real deal
At the moment it is available only in trials or you can pay lots of money to get it done (lots of money!)
It not entirely safe (1-5% mortality), and it is reported to be effective in 85% of all patients treated, think there have been around 600 operations worldwide to date, not sure exactly though
As the very first sentence underlines, this is at the moment still a high treatment, and only suitable for very aggressive cases, where there is little to lose.
I do know someone who’s had it for another condition, not MS - a type of leukaemia, I think. For her the choice was very stark: “Without it, you have only months, so there’s nothing else to try!”
I think she had it some years ago now, and is still alive and kicking, that I know of (it’s the mother of a friend of mine - supposed to be meeting for a drink in the not too distant future, so will enquire).
A strange side-effect (I don’t know if it’s strictly a side-effect, or just one of the more bizarre consequences of treatment) is that she now has TWO distinct DNA profiles, both present in parallel, to everybody else’s one! So it’s a good job she’s an elderly lady, and very unlikely to be involved in crime, as the forensics would prove interesting. I’m not sure if it would be a dead giveaway, because her genetic profile is so rare, or if it would simply confuse researchers into believing there must be TWO perpetrators. I suspect the latter, because it wouldn’t be considered a realistic possibility that one person could have left two genetic fingerprints.
But she could!
Tina
yes true , its a treatment that carries a potential for risk.
You can however get this treatment by shelling out your own cash. You can go to Moscow,Israel,Heidelberg,germany,america does it too.
It has also been proven that this treatment works best in early RRMS. Getting it done earlier increases the chance of the treatment having a 100% success rate. These are the facts as i understand them.
Just becasue there is risk doesnt mean its not worth taking
Sorry, but I think shelling out your own money for a 1-5% risk of DEATH, especially if you have “early RRMS”, and are not severely affected - and perhaps never will be - is NOT a risk worth taking.
Would you get on an aircraft or ferry with 100 passengers, if you knew between 1 and 5 of them wouldn’t make it alive to the other end? I wouldn’t!
I think if you are in the position of my friend’s mother, i.e. “Your condition will prove fatal in months, if you DON’T do this”, the decision’s a lot more clearcut. In fact, there’s no decision to make.
But very few people with “early RRMS” are in that predicament. MS is rarely fatal, and especially not in months. No thanks, I don’t want a 1 in 20 chance of dying, when, fair enough, I don’t feel brilliant, but nothing that’s not livable with.
Tina
i cant argue with the point youve made, its all true to an extent…
I like to assume the worst though, its well within the realms of possibility that my MS will not behave itself in the near future, and as long as thats a possibility i feel its an area that needs addressing. I want to regain some kind of control.
Living and surviving are 2 different things
This one looks like it could be a cure - yes, a real cure - for MS
But, OMG, it does raise some interesting points.
As a treatment, it has a probability of death, as a direct result, of between 1% and 5%.
So let’s take two typical cases:
Case 1 is age 35, has been diagnosed with RRMS, and is in remission. Case 1 could well not have a relapse for 10 years, and will probably not get offered DMDs unles the next relapse comes quite quickly. Case 1 can now look forward to 25-35 years of further relapses and may well spend 15 years in a wheelchair The cost of medication for Case 1 will be substantial.
Case 2 is a person who developed RRMS MS late in life. Let us say 69. Case 2 is now 75, and the progression of MS suggests a probable life expectancy of less than 5 years (and not very good years at that). The 1%-5% risk does not mean very much to someone with a 90% probability of death within five years.
OK, Case 2 is fairly easy - nothing to lose - if the money is there, or the state will pay, why not take the chance? But how about case 1?
Case 1 can look forward to a few good years, and quite a few years that are not so good and getting worse. It might be advantageous from the point of view of a cash-strapped NHS to give Case1 the stem-cell treatment (always assuming that the bean-counters are capable of doing the sums). Case 1 may well decide to spend the cash and look forward to a normal life.
Yes, Case 2 was easy, there are some good reasons for Case 1 to have the treatment that could be a cure, but what about all the people in between? Note that I have not made this gender-specific. Case 1 could be a mother with young children, a guy building up a small business to hand over to his son, the ages could be different, and there are a lot of grey areas between the two cases.
Am I biased? Of course I am. Case 1 is a friend, and Case 2 is me. At the rate at which these treatments get the go-ahead, Case 1 may well be offered the treatment, and get a reprieve from MS, but I will probably not be around to see it happen. Only each of us can say whether it is worth spending the money. Lots of research (by reputable researchers) is being done into stem-cell treatments. If it works, and I truly hope it does, not everyone will be able to benefit. It will certainly not be a quick sprinkle of magic pixie dust and everything is cured.
Geoff
I’m newly diagnosed with RRMS and it’s early days but to be honest, if I didn’t have a daughter and was presented with the opportunity, I’d go for it.
I know there are risks but I’d still take my chances. I’m a bit of a risk taker anyway. I wouldn’t risk leaving my daughter motherless aged 10 though. I won’t play with that risk. But if it were just me, yeah, I think I’d go for it if it would cure me of the MS.
I’m going to have this in India in August if I can get the money together. There is a small trial(?) running in London for this but criteria is very strict - I believe same as Dr Burt, it’s the one Stella was on.
I’m up for the risks, this is driving me crazy and I can’t sit back and have no control over it’s progress.
Horses for courses and all that.
For anybody interested joining this group is a must - very informative.
I’ve got a son with MS and one who had leukaemia and had a BM transplant. It is very hard, and I must admit I thought the mortality was higher than 1-5%, but that may be with cancer patients who are in a weaker state anyway. My son sailed through the transplant , although he nearly died in one of the earlier chemo regimes due to blood poisoning when his immune system was down. On MS UK they have a blog done by Stella, a girl with aggressive MS, who was treated with a HSCT in Nottingham. She developed sepsis and has lost her hearing and some fingers, I think. A HSCT really needs to be done at a centre that does a lot of them, and knows how to look after you when problems arise. I don’t think they would give you a full HSCT over a certain age anyway as it is so risky- at least that is what cancer patients are told.
My son with MS has had alemtuzumab. 1st dose 3 years ago and no relapses since- touch wood.
Yes, it’s interesting. It perports to be a cure and clearly some believe it is.
While concentrating on the end result, the cause is not being addressed. What if one goes down this route only to find that the body attacks itself again in the same or in a different way with similar results, then back to square one? This seems to have been the case with CCSVI.
Mark
I know what you mean mark, but this is not in the same league as CCSVI. I dont think the people performing this treatment pretend to have the answers. I think this operation works off the premis that “the immune system is faulty”, we dont understand why its faulty, but replacing it with a new one is the best we can do in this day and age, and it seems to have positive results