Bone Marrow Transplant

[Mummy76]

Has anyone looked into this to get rid of their MS?

I'm starting to reasearch having this procedure done overseas and was wondering if anyone else has considered it?

[Lulu54]

A very clear explanation of the HALT study and how stem cells and bone marrow work together in this process can be found at

http://www.unitedspinal.org/msscene/2009/05/06/stem-cell-transplantation-in-patients-with-ms-in-the-halt-trial/

[HVAC]

It will not help damage that has already occurred. I have had my immune system surpressed to fight cancer and almost died . A bone marrow transplant is serious. A friend of mine had one for cancer and it was a success. He got a cold and died two weeks later.

Alex

[summerluvr]

I don't think going for a treatment "holiday" abroad would be posible.  I could not even walk up a flight of stairs when I was released from the hospital, and then I was treated/ evaluated in the out patient clinic twice a week for fluid infusions, and then once a week, then every two weeks.  I got sick about a month out and ended up back in the hospital for a night with IV antibiotics.  It really is a longer process then just the transplant procedure.  There were many ups and downs for the first two or three months.

[Lulu54]

I heard my Neuro speak in June and I asked him this specific treatment question becauseOSU had participated in the HALT trial.  In fact I even talked to their trial nurse about participating and she said my MS  was no where near bad enough for me to be considered.  It is only for the most serious of MS patients.  

How it works is the refreshed/new bone marrow produces cells that attack the MS. It reboots the immune system from scratch,    This is still strictly experimental and a research tool. They only had 4 patients qualify to participate - patients had to be I really bad shape because there was a possibility of death with this treatment.  

My doctor said it took three years to see results   -year one he said all the patients hated him.  Second year they weren't so sure what they thought.  And then the third year they loved the research team because they were  again walking and living a fairly normal life.


The process involves the same as summrlvr went through with her cancer.  The immune system is knocked out completely and during that time there is no defense to any germ  or disease that might come in contact.  Essentially any of those can kill the patient.  

I would be very concerned about having this procedure done in another country where you don't have your own doctors monitoring your condition. I certainly would not want to get on a germ filled airplane to fly home.  

-laura

[Mummy76]

Agreed.  I am also firmly in the science category.

[doublevision1]

Hey mummy, I took a quick look at the blog.  I'll try to read more later, but just wanted to comment that i noticed that the blogger described she was in decline, with a high EDSS and only able to walk short distances, with a cane, and sounds like she was SPMS when she had her transplant.  It sounds like she may be more in the severely symptomatic  and declining category of the Canadian study subjects, as opposed to RRMS that many of us are.   Dr. Green said that bone marrow transplant had not been studied in RRMS and so there's no data on whether it would work with this type of MS.  I wouldn't consider the procedure for my RRMS until it's been studied.  If this procedure has long lasting results for the rapidly declining patients, it would be a major breakthrough that this group of patients finally would have an effective treatment option.  Perhaps it will lead researchers to study the same treatment in RRMS, or at least increase knowledge about the diff types of MS, and why and how the diff groups respond to various treatments.  It will be wonderful if this advances the overall knowledge of this disease, and I hope that it does.As for the heavy religious overtones of her story, I do not look to the grace of God that she cites,but to science to treat my MS.

[NormanG22]

I would consider it, the cost is out of reach at this time.

[summerluvr]

One quirky thing, I have been diagnosed with an autoimmune disease recently, which my oncologist said is not that common after transplant. So it seems I am special :|   (hashimoto thyroid disease)

[summerluvr]

I've had a bone marrow transplant to treat Multiple Myeloma (bone marrow cancer)  it was three years ago.  My cancer is in remission, but it is not cured.  I had the transplant as a means of knocking my cancer into a deep remission, since Multiple Myeloma is not cureable, you have treatment, hope for a deep response and long remission, but the disease is one of multiple relapses until you become resistant to all drugs

for my transplant I was two high doses of chemo, to kill my bone marrow and then given my stem cells back to replant it. sounds simple enough, but I was in the hospital three weeks with constant nausea vomiting and diarrhea, and then had a few complications with my kidney, blood pressure and infections.

It took me about a year to recover, and through stubborn determination I am back to living my life active and working. I spent a lot of hours at the gym working on gaining muscle and stamina back.  My age no doubt helps since I am very young for myeloma (on 32 when diagnosed)

long term effects I have a type of chronic anemia, a weaker immune system, but overall I feel good. I live with other symptoms from my cancer (bone pain, back pain, and peripheral neuropathy hands and feet)

I'd be interested in knowing how it "cures" MS or provides long term remission? In Myeloma, 3-5 year remission is the usual response before relapse.

[Mummy76]

Pass on what? I was only asking if anyone had looked into this procedure, not actually offering the procedure. ; )

[SarahL2491]

I'll pass

[Mummy76]

http://amygoesninja.wordpress.com/

Interesting blog

[doublevision1]

Well, theoretically and possibly in reality, the bone marrow transplant "re-sets" the immune system, as mummy put it, and of course in MS we have malfunctioning immune systems.

Here's a news article on the Ottawa study:

http://www.vancouversun.com/health/Ottawa+doctors+behind+breakthrough+multiple+sclerosis+study/8189161/story.html

Fingers crossed, but hopes tempered.

[SarahL2491]

I am not seeing how a transplant can equate to what causes MS........they are different animals.................

[immisceo]

For me this is filed under 'interesting' and nothing more at present. The one study I could find involves only 24 people (if you are referring to "Diminished Th17 not Th1 responses underlie multiple sclerosis disease abrogation after hematopoietic stem cell transplantation" published in the Annals of Neurology this spring). This is not to say there's nothing promising there; studies always begin with small numbers. But it does mean that nothing is 'proven' just yet, rather that it is a very interesting finding in need of much further research and replication.

It is far too early and dangerous to pursue this as a treatment, especially if it involves paying out of pocket and travel to a foreign country with potentially very different medical standards and oversight and/or a language barrier. A clinic is a foreign country willing to do this to you at this stage would quite frankly have questionable ethics to say the very least, simply adding to the list of dangers.    

Reading the abstract (the full study is behind a paywall), this would not be a case of hopping a plane, having a procedure, and coming home without MS.
It's a very involved process involving lengthy pre-and post procedure care and was only trialled on those with extremely aggressive MS under strict study protocols and ethics standards. And as DV stated, a bone marrow transplant involves significant risk at the best of times. The risk-to-benefit ratio on this in no way passes muster for those of us with RRMS.

It can be very daunting to have a chronic, as yet incurable disease especially if you feel current treatments aren't working for you. How each of us choses to deal with that is very personal. However, I'm not willing to put my life on the line for something that is still in the theoretical and very early stages of study. Being part of a drug trial, years into it being investigated, is as far as I'm personally willing to go.

[doublevision1]

No I haven't considered it.  I think it's very interesting and very promising, but the studies have been very small, and only involved patients with a very aggressive course of MS, that would have them in wheelchairs within months or less.  They don't know if it will work as well in other forms of MS and this still needs to be studied.  

I watched my uncle go through a bone marrow transplant for multiple myeloma and it was hell for him, and he died within a few months from the disease.

My current perspective is that MS won't kill me, Copaxone won't kill me, but a bone narrow transplant could.  The benefits could be greater but so are the risks.

[Mummy76]

Yes it's been proven effective in studies.  It's kind of like they are hitting reset on your immune system.  They destroy your immune system then give you the transplant.  It's also proving to be effective for HIV.  It's risky and expensive but I think it might be worth it.

[PastorDan]

I'm not always up on the leatest science, butf I don't see a connectionbetwwn bone marrow and MS.  Has this been demonstrated effective?

[ghost39]

I don't know much about it. Care to elaborate???