Opinions on HSCT

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Opinions on HSCT

Postby iKat » Thu Jun 20, 2013 5:53 am

I have been reading where some people consider this a cure. I also have read where it doesn't work for everyone and it has serious side effects. I have an oppertunity to go to Chicago for this treatment but I am a little fearful of the extreme chemo and the long term side effects from the chemo which can be worse than MS itself. But then again maybe a possibility to get rid of MS once and for all. Also if it was so great why aren't more people doing this?
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Re: Opinions on HSCT

Postby HarryZ » Thu Jun 20, 2013 6:16 am

iKat wrote:I have been reading where some people consider this a cure. I also have read where it doesn't work for everyone and it has serious side effects. I have an oppertunity to go to Chicago for this treatment but I am a little fearful of the extreme chemo and the long term side effects from the chemo which can be worse than MS itself. But then again maybe a possibility to get rid of MS once and for all. Also if it was so great why aren't more people doing this?


The procedure is still very experimental and has been found to have positive results on certain types of MS patients. Don't forget, they are basically giving you a new immune system and that alone is going to shake the heck out of your entire body. And with it comes huge risks up to and including death.

I'm not sure how some people can consider this a cure because nobody yet has been able to determine what causes MS so how can you cure a disease that doesn't have a known cause?!

Yes it would be nice to get rid of MS for good but science just isn't at that point as yet. Ensure that you have all the information available, both positive and negative, before making an informed decision as to whether you want to do this or not. And make sure you have a second opinion from someone not involved in the procedure before you make this decision. Best of luck.

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Re: Opinions on HSCT

Postby iKat » Thu Jun 20, 2013 7:09 am

Some people consider it a cure because they said their symptoms stopped after the procedure. They refuse to call it remission, when in fact it most likely is. Still it I think it's something I would like to consider, but the possible death by chemo part is not thrilling.
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Re: Opinions on HSCT

Postby HarryZ » Thu Jun 20, 2013 7:56 am

iKat wrote:Some people consider it a cure because they said their symptoms stopped after the procedure. They refuse to call it remission, when in fact it most likely is. Still it I think it's something I would like to consider, but the possible death by chemo part is not thrilling.


I know of MS patients who have had their symptoms stopped by various methods but that doesn't mean that their MS is "cured". A patient can consider and think whatever they want...that is their perogative But that doesn't mean their MS has been cured and gone forever. With MS, one just doesn't know!

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Re: Opinions on HSCT

Postby iKat » Thu Jun 20, 2013 8:05 am

Exactly. I was dx about 25 years ago. I am still RRMS, no progression or new lesions in 15 years. EDSS 1.0 and thats because of my left eye after having ON for 9 months. it shakes a little on exam, but that's it. I was on Copaxone all those years and apparently did well, but I would not have called it a cure because of no progression or attacks. I have been off 5 years now and recently had a string of odd attacks and a bunch of new enhanced lesions. I am getting old...er now :) and I am fearful of qualifying for treatments such as this and afraid of missing out on a opportunity. I have a 5 and a 7 year old and I don't want to end up disabled. So that's my delima. There is so much hype with this HSCT, maybe I got caught up in it. Lets face it, not many options out there right now.

on a side note, I am feeling really tired and listless after my last attack a couple months ago, random tingling etc... so this is a motivator for me as well.
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Re: Opinions on HSCT

Postby mmpetunia » Thu Jun 20, 2013 11:37 am

On the issue of HSCT being curative:
Cancer is considered cured after 5 years without reoccurrence. People undergoing HSCT have shown positive effects from it, up to and including complete halting of progression and some or complete recovery from disabilities. People have been shown to remain in this state of stability/ improvement for 10+ years in clinical trials.

The medical profession has not given a definition of what it means to be cured of MS but 10 years no progression and symptom improvement sounds to me to be as close as we can get right now. And if 5 years of the same criteria is good enough to be considered cured of cancer I'm inclined to think its good enough for MS too.

The chemo is a risk but for me, if you weigh the risk of dangerous or life threatening complications (PML anyone?) with the long term benefit of current treatments I think HSCT is still the better option.
Dx: 9/8/11 RRMS
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Re: Opinions on HSCT

Postby HarryZ » Thu Jun 20, 2013 12:09 pm

And if 5 years of the same criteria is good enough to be considered cured of cancer I'm inclined to think its good enough for MS too.


I realize that using the numbers here seems like a good comparison but there is a difference if one wants to use the word "cured." With cancer, going 5 years without new evidence of new cancer cells indicates that the disease has been eliminated...at least for the type of cancer the patient had. There is a specific measurement that can be used.

In the case of MS, since there is no known cause, they can't measure or compare anything for sure to know if the underlying cause of the disease is gone forever. Like I said earlier, there are MS patients who have gone years without any sign of the disease only to have it return. So to only use the 5 years as a marker doesn't really work in the world of science.

Having said all of this, to go 10 plus years with no apparent signs of the disease is marvelous. Cured?..who knows but for the patient involved it doesn't matter since it is he/she that is benefiting tremendously.

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Re: Opinions on HSCT

Postby iKat » Thu Jun 20, 2013 12:14 pm

mmpetunia wrote:On the issue of HSCT being curative:
Cancer is considered cured after 5 years without reoccurrence. People undergoing HSCT have shown positive effects from it, up to and including complete halting of progression and some or complete recovery from disabilities. People have been shown to remain in this state of stability/ improvement for 10+ years in clinical trials.

The medical profession has not given a definition of what it means to be cured of MS but 10 years no progression and symptom improvement sounds to me to be as close as we can get right now. And if 5 years of the same criteria is good enough to be considered cured of cancer I'm inclined to think its good enough for MS too.

The chemo is a risk but for me, if you weigh the risk of dangerous or life threatening complications (PML anyone?) with the long term benefit of current treatments I think HSCT is still the better option.



That's why I refuse to take Tysabri and neuro's love to push that on me. I also turned now tecfidera. I am allergic to Copaxone now and didn't do well with the original meds such as avonex etc...

I am still considering it, but not sure if my heart is strong enough for the chemo.
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