Five reasons NOT to get HSCT

[ActiveMSers]

You might be wondering to yourself, is this treatment right for me? Should I be investigating avenues to get this done? Is this my best hope for a better future with multiple sclerosis? The answer to almost everyone reading this: probably not, at least not right now.

Here are five reasons not get HSCT:

1) It's super expensive. Even the cheapest centers overseas will run nearly $100K and insurance almost certainly won't pay for it.

2) It's super risky. You could die. Odds are realistically about 1 in 100 (officially listed at 1 in 20). There could be future complications down the road including cancer.

3) It's super hard. You'll be hospitalized for at least three weeks and need to vigilantly watch out for colds for at least six months.

4) It's unproven. While early results look promising, especially for RRMS, this is still experimental. It appears this treatment is less successful for SPMS, and in PPMS even less so.

5) There are other safer, cheaper, and proven (but still aggressive) treatments available now or coming soon. Tysabri is on the market and the more potent Campath is coming soon.

It's easy to get caught up in the hope of HSCT, especially if you are newly diagnosed and scared of your now-uncertain future. You want the MOST effective treatment, and you want it NOW. Sorry, this is absolutely not for you.

Who is this for? People with rapidly progressing disease who have failed multiple treatments and are still in the active part of the disease (typically RRMS or PRMS).

This treatment has a ton of promise and offers hope for the future, but I would recommend it only in extreme cases like mine.

[Stella]

Dave, what is HSCT? Sorry, I am still learning.

[shucks]

I have been asking folks "why not" for a while now, with no real reasoned response, thanks for the perspective. I feel like you answered the question I have been asking everywhere. I'm still twisted up about what's right for me, but really appreciate the perspective.

One question, If you want the best treatment available, why not try to get in the trial? Just wanted some exposition.

[ActiveMSers]

One question, If you want the best treatment available, why not try to get in the trial? Just wanted some exposition.

Well, there is no consensus that this is the "best" treatment available as research is still young, and even if it is, there are a ton of trade-offs. The best for one person might not be the best for another. So much of it is situational.

What if a new treatment had a 50/50 death rate. But if it worked, you would be cured 100% with no disability. Would that be the best? For some, maybe. For most, no way. The results would be incredible only if it worked. So long as there are significant trade-offs, there will never be a single best treatment.

[Carmel]

disagree

Dave your post on why not get HSCT, i had to object...

Point 1 i had to agree for US Ms'ers, In australia,canada and UK it is free

Point 2, no pain no gain.....at the end of the day they perform on average 60k of these operations around the world each year for cancer treatment.....death rates are established based of treating 16 diffrent disease....Not MS where they have only treated 600 over 15 years....the reason of which .... go to point one


Point 3 yep hard give you that....when they release you....you have the same immunity system as a new born child....you have not got vaccinations granted.....but you have a fully working immunity system....i had gastro 3 months out....i survived...


point 4 strongly disagree about PPMS and SPMS, especially when it comes to BEAM not lymphoblative procedure that you had......there is more data/trials around these stages being successfully treated than RRMS, that they cannot pin down as the disease could go into remission on it's own.

one of many examples...were all participants survived treatment
http://www.cmj.org/periodical/PDF/2006111751484810.pdf

point 5 ...oh boy were do i start.......first the treatments you pointed out never make the aim of stopping the disease by 100%.....they just aim to slow down the progression of the inevitable outcome.....only HSCT will stop progression by 100%...if you respond to treatment....


Also can i say in answer to some other posts....my edss was 6.5 progressing to 7.0,,,if i was not already there,,it is now 4.0 to 4.5 on a bad day....i can see myself improving to 3.5 but don't like to make a claim until it a med professional confirms


Who is hsct for.,......anyone who's edss is progressing despite following medication adivice from a neurologist.....once you have progressed beyond 3.0....thier advice has failed....and it is up to you to continue to follow....no one is to blame for continuing to follow advice but yourself......did they plan for to get to 3.0? what edss score do they plan to allow you to progress to 8.0?.....the sooner this is not engrained the sooner that it can be reversed.....the longer the disabiliity is there the less likely it will be reversed but not impossible.......


One thing i will say HSCT is not a cure...HSCT will place the disease into remission as the genetic floor it still present and go off at anytime like before.....When the disease is in remission your body has the opportunity to repair itself.....Stem cells rebuild immunity not nerves like the stem cell clinics claim......


One thing that i have found so rewarding is giving others hope when that has been so successfully extinguished by the medical profession....there is hope! I am living proof

[ActiveMSers]

Hey Carmel, thanks for all the comments. I believe our opinions on HSCT are more alike than you think. In fact, our treatment was the same with BEAM, and I'm pretty sure we both believe that HSCT is arguably the most potent treatment for MS—and a huge reason for hope and optimism for the future.

I was pretty careful in wording my five reasons not to get HSCT. This is a huge step for people, and I would feel horrible if I encouraged someone who didn't need an HSCT to get the treatment... and then he eventually died. Or spent her life savings... and it failed. Or tried for years to get funding... and ignored other treatments.

As for the effectiveness of HSCT (point 4) with SPMS and PPMS, I found a major study that suggests that it is a questionable treatment for PPMS or SPMS without active lesions. I read the full study and BEAM was used for some of the later treatments.
http://activemsers.wssnoc.net/showthread.php?t=460

And as for point 5, I was careful to avoid saying that those other treatments were more effective. I only said they were safer (true), cheaper (true), and more thoroughly tested (true). My point was simply that those are good treatments and may be a perfect bridge until something more effective comes along. If that's HSCT, great. If it's something else, great.

For aggressive MS, like yours and mine, nothing is more effective than HSCT (IMO). But I know lots of folks who are doing incredibly well on traditional therapy, and have been for nearly two decades. I'm all for being aggressive in our fight against this disease, but the howitzer, no matter how appealingly powerful, isn't always the most prudent choice....

Carmel, keep up the good work. I'll have a new video ready soon (re: hope) that I think you will really like. Cheers,

[Carmel]

I understand your position dave

David*

Thanks for your comments, in regards to our agreeing on the HSCT as the most potent treatment available to MS'ers i could not agree with you more **

and you your reply of*

"I would feel horrible if I encouraged someone who didn't need an HSCT to get the treatment... and then he eventually died. Or spent her life savings... and it failed. Or tried for years to get funding... and ignored other treatments."*

I totally understand your position. There are those that are right at the beginning of MS disease cycle that trial data has indicated that this form of treatment will result in them not responding to treatment and if they did, have little benefit if they only relapse once every 5 years. These people though should not be discouraged from researching and finding out of this treatment as it is highly unlikely that they will stay at that stage of the disease cycle for the rest of their life's and when they do progress they need a PlanB.*
I as an australian fail to comprehend the US medical system. It is a strange world for me to spend more than a token sum on medical treatment but we pay for that through our high taxes compared to the US. I find it hard to believe that people need to spend thier life savings to get treatment but know it is true and as a result the majority of those that i am involved with are US citizens attempting to raise amounts that only can be described as high extortion of the most vulnerable. Due to the amount required it does require a huge effort. Also due to the US running these trials other countries such as australia will not. They will not spend what limited funds they have for research on replicating trials already been done overseas as it is seen as a duplication of effort and resources. Imagine how much quicker if these trials where done here, where participants did not need to pay for the cost of treatment. How much quicker it would be for US citizens do have this treatment under health insurance.*
The US medical system is holding the development of this treatment back and used as a convenient excuse elsewhere.*
*
I would not recommend for even a moment that people should ignore current orthodox treatments but understand the frustrations at it's failure and also side effects, not to mention the*psychological courage*it takes to stab yourself with a needle on a regular basis.*

In regards to feeling terrible that someone would die due to the treatment, i could agree with you more. It would be devastating. At the same time the risk of treatment should be explained that the death rate is 1 in 100 and those people should accept the risk as they do when they get in the car every day to travel down the HWY.

I would feel terrible that another person died as a result of treatment but i feel terrible when people are dyeing because they cannot get funds for treatment. One lady in the US that i am helping has been told by her neurologist that this treatment is her only chance and she has at most 6 months to live, she then finds out about the bill.....she a single mother of a nine year old.*


http://www.tlccares.org/Page.aspx?ni...h6ubQ.facebook

I feel terrible when people that are dependent on a walking frame and you can see that they will soon be in a wheel chair and then on their back looking at a ceiling for the next 30 years, being told that this treatment has to many risk's associated with it. The 1% risk is way better than what you know is a 100% certain fate. Dr obsessed with their "success" in keeping their patient's alive need to acknowledge that lose of life occurs when they loose their quality of life and spend years wishing their hell to come to an end. When this type of scenario is a real possibility *all options should be presented to the patient with full explanation of consequence for each choice.*

I do acknowledge that there are many that respond to current treatment's at slowing the disease cycle down but also acknowledge that .......a slowing down not a halting to the disease cycle........those treatments also come with side effects and other costs.*

One of the selection criteria around HSCT used in many trials is how long have you been diagnosed, most prefer 5 years....not how long have had ms.....they dont care if you have had MS for 15 years but care if you been diagnosed longer than 5 years.......why?......the current orthodox treatment undermine the immunity system, by suppressing it for years, this make's PBSC more difficult and more likely to fail and hence the treatment to fail. The other reason is that the disease has likely been more ingrained since treatment/diagnoses *(i.e nerve damage) but current treatments do have greater side effects than most realize as the consequence is yet to be realized.*

Simply being alive due to treatment is not a success...The richest man in australia died of kidney failure. When asked why does he not have another kidney transplant her replied*
*"I can't eat what I want to eat, I can't do what I want to do, and I can't go where I want to go. Son, what am I doing here?

You can see the same comments around MS, with HICY, every time they applied to the FDA it was rejected

Each time the concern was about patient safety. “One reviewer said it was ‘too risky an approach for a disease such as MS,’” recalls Kerr, shaking his head. “But MS is a devastating disease. As one of my patients said, ‘Mortality is not defined by stopping of the heart, but by when you can’t do things that mean a lot to you in life'

I understand your concerns around someone dying but i am equally concern about those wishing for death due to not being able to access to treatment or those that are denied treatment due to lack of funds. There are a lot more of the latter than the former.*

In regards to your comments on point 4,*if you are diagnosed as RRMS in australia you are automatically disqualified from ACT trials, I had to get my diagnoses change before i was in consideration. They target those right at the end of RRMS with progressive disability and those at the initial stages of SPMS....

those that are at the earlier stages of the disease need to be aware before they are in the narrow window so it is not denied to them. The selection criteria means that 59% of people it is to early to be considered. 1% are in that window and 40% well lets hope that tysabri or mitoxantrone works and btw here some broachers on nursing homes. If that 40% was aware before hand they could have taken a decision instead of their treating doctor taking it for them.*

I have spent considerable amount of time on getting every peered reviewed study i can get my hands on.....I literally have 100's, i place adds in russian newspapers to get people to translate their studies for me, I have the spanish the greek, the italian, the chez the brazilian just to name a few. The greek study you refer to involved TBI....and is one of the oldest and outdated forms of BEAM for MS that there is, i have all 8 study papers of the greek study. The study has had a huge impact in the development that we all still benefit from. But it is a recent paper on a treatment done 15 years ago, with a treatment that i did not receive. * **


A better source of information of longevity is a recent R Nash paper*

http://msj.sagepub.com/content/17/2/204.abstract

i have temporarily put it up on my web site for you, i will remove as they still not general release and they are copyrighted.....


http://www.msstemcell.com/204.full.pdf

http://www.msstemcell.com/1068.full.pdf


If you read the 2010 study of Nash systematic review of BEAM conditioning of 100's of patients and refer to table 3, it shows that those who have had BEAM conditioning without TBI have 79-86% chance of being progress free after 3 years while those who received BEAM + TBI therapy have a 25-35% chance of being progress free. Pretty much a summary of the greek study results. I do not believe in judging the current treatments by such an outdated form of the treatment as you are comparing apple to oranges.*


Also in regards to stages of disease cycle*from the same Nash review of nearly 200 international studies*

Results: For secondary progressive MS, immunoablative therapy with autologous bone marrow/peripheral blood stem cell transplantation was associated with higher progression-free survival (up to 3 years following treatment) when using intermediate-intensity conditioning regimens compared with high-intensity conditioning regimens. The evidence was insufficient to determine whether the treatment was effective in patients with other types of MS. Treatment-related mortality was about 2.7%.
Conclusions: Patients with secondary progressive MS refractory to conventional medical treatment have longer progression-free survival following autologous stem cell transplantation with intermediate-intensity conditioning regimens than with high-intensity conditioning regimens.


I am though not though be surprised if i do relapse, as i said this is a remission not a cure. While the disease is not active i will continue to recover my disabilities. No other treatment can do this. Also in regards to waiting for something else to come along will most likely be an Allogenic HSCT, they now can test the donor has the genetic floor that sets of the immunity disease MS so the effort is not wasted, the gene therapies are several decades away.*


I really am looking forward to your next video david, i really enjoyed your last one.*You are a very intelligent and articulate man. that has contributed beyond words to his fellow MS'ers

[ActiveMSers]

You are a very intelligent and articulate man. that has contributed beyond words to his fellow MS'ers

Ha, now I know you have brain lesions, Carmel! You are doing a pretty darn good job yourself....