Wednesday, 26 February 2014

Survey results: bone marrow transplantation

Are MSers really this willing to take risks? #MSBlog #MSResearch

"In response to my posts on bone marrow transplantation (BMT) and brain atrophy after BMT in MSers I have the following interim results of our one question survey. Could  this really be correct? Almost 50% of MSers are prepared to take the risks of BMT. Only 32% said no. If these result are correct I have seriously underestimated the risk MSers are prepared to take in the hope of a potential cure for their disease."




"Please have your say!"



17 comments:

  1. You have to live with this disease to experience the real impact and the losses. Once you've been diagnosed you've got it for life and you have a lens into the future in the waiting room of your nero's office. You see the impact of the disease in your clinic, but at the end of the day can go for a run or plan an exciting holiday. These options are often not a available to MSers. You've noted before that MS results in high rates of unemployment, divorce, suicide. BMT offers hope of stability and to get some life back. I'd rather take my chances of death as a result of BMT than the death from MS (edss 10). It shows how superficial clinic visits are. Neuro asks how you are doing, you say not too bad considering, neuro says see you next year.... patient goes home for another 364 days of MS with no chance of getting their life back. Perhaps neuros underestimate the impact of this disease i.e the impact of knowing at 25 that you will be ill for the rest of your life, are likely to become disabled, and are likely to die c10 years before the average life expectancy.

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  2. A 1% risk v the chance of a better life = a no brainer for me. Without a cure the next best thing is hope, you cannot give us either but BMT at least gives us hope. Dont we deserve that at least.

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  3. On the contrary, I said I wouldn't take the risk. It seems like my first-line DMT is working for me so far--2 years with NEDA. I feel like I have the luxury of waiting for a less risky cure for a few years. If I started getting damage, and couldn't stop it quickly with the more effective drugs, I'd change my answer in a heartbeat.

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  4. Yesterday I answered no to the question then I really thought about it. I'm not too bad at the moment. My ms is mild but I live in constant fear of it turning on me. I know it will one day, could be tomorrow or in a few years. One day it will become more progressive. I will become more and more disabled. I do everything I can not to feed the beast but the path my disease takes is mostly out of my hands. I don't want to live in fear of becoming bedridden. I don't want to be a burden to my children so yes, without a doubt I would take the risk of a BMT.

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  5. My wife and I made the decision years ago when I started Tysabri. Give me 5 good years over 30 crappy ones. For me it all comes down to an expected value equation. If I have a 1 percent chance of death, and even a X percent chance of cure, then I can weigh the options. The assumption is the years of misery are worth nothing in my equation. Give me a functional "cure" or stop me and those around me from suffering a long decline. Either of those options is acceptable. Thankfully, tysabri has been a functional cure for me thus far, though my symptoms still progress some.

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  6. I would do it in a heartbeat. It needs to be an approved procedure not an experimental one. I was just diagnosed in January and I am 54 years old. 13 years away from retirement, and now dealing with legs that don't work and serious cognitive issues. How am I supposed to be able to take care of myself??? I do not want to be on disability, I want to work for the 13 years! I agree life well lived, give me a FUNCTIONAL cure for a few years VS. a 20 year decline, I'll take that any day of the week! By the way the procedure is 95% effective, no relapses and improved EDSS.

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  7. The variable is the level of disability accrued by the patient. Higher levels would lead to taking on greater risk. Break it down to RRMS and SPMS groups, I'll bet the results would back this up.

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  8. I know someone, leukemia survivor, with graft host disease. So, probably not for me, but it is not the risk of death that would stop me. Campath yes. Tysabri, maybe someday, but only with a carefully drafted advanced directive. It's not death I'm afraid of at this point.

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    1. Graft vs. host disease only occurs in allogenic stem cell transplants where the stems cells are donated by another individual. What is being discussed is autogenic stem cell transplants which the stem cells are harvested from yourself so there is no chance of a graft vs. host desease.

      But yes, I think HSCT would be a good option for those with highly active disease.

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  9. I answered No, for now. I accept the 0.14% risk of death from PML that comes with my JCV status and 2+ years of Tysabri - so BMT risk is about 3-7 times higher. My other observation is that the PML risk is a much higher percentage chance of death than I thought I was accepting 5 years ago when I gave my "informed" consent. That has skewed my perspective of how static these percentage risks are - in stat speak, what are the confidence limits ?

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  10. A bone marrow transplant in 2010 saved my life (I am part of the HALT-MS clinical trial sponsored by the NIH). My MS had turned blindingly aggressive and I had failed all existing medications including Tysabri. In my particular situation, taking the risk was a no-brainer. But I agree with the Doc, many would not (and perhaps should not) take the risk, especially if other effective treatment options are available. For those interested, folks can track my progress and read about my experience over at ActiveMSers.

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  11. One has so much to say on this topic, though, for now, one feels the very personal and emotive comments from your readers indicates just how crippling, both figuratively and emotionally, multiple sclerosis is.

    BMT therapy to me is about as convincing a treatment for MS as CCSVI, however, the natives are restless and willing to try anything as long as a clinician endorses it. You can see just how vulnerable these people are, can't you? I feel like giving them hugs and telling them not to worry themselves, but that will probably be as useful as giving unproven medicines, though less dangerous mind you.

    I will like to quote my mate Willy Shakespeare who in All's Well That Ends Well wrote:

    Oft expectation fails, and most oft there
    Where most it promises; and oft it hits
    Where hope is coldest, and despair most fits."


    Our pals Don Giovannoni and his brain posse should have this quote tattooed on their torsos to remind themselves that hope often exists in the unlikeliest areas.

    I kiss you on both cheeks and say farewell. Laters!

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    1. To equate HSCT with CCSVI is a statement bourne from ignorance. Since a form of HSCT is now going through an FDA phase 3 trial now, hopefully this will be an option for some in the future

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    2. What's that Hope Dre?

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  12. Sadly, as a PPMS'er we don't even have this option or any others for that matter

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  13. In a heart beat. HSCT is something I'm following closely and the awareness of the treatment is gaining pace. Australia has just aired a documentary following this procedure in an MS patient. The more people that know about this the better.

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