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Thread: Stem Cell

  1. #11
    Forum Member Barry52's Avatar
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    Hello Kim,

    I am sorry to hear that your father has lost his battle with MND and please accept my condolences. You say you are uncertain about the benefits of stem cell treatment but the fact is that there is no proven cure by undergoing this procedure. The only medical "professionals" promoting the treatment are in it for profit. It sounds like your father underwent a huge physical, financial and emotional strain to experience a brief improvement in his quality of life, only to suffer a rapid decline.

    I don't wish to appear negative or offensive as we all clutch at any straw when faced with MND but I do want to convey the message that stem cell treatment has a long way to go before it is proven both safe and successful.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  2. #12
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    Hi Barry,
    Didn't Brainstorm prove the safety of stem cell treatment with their phase I and II trials? Phase III is pending at the moment.
    Thanks,
    Steve

  3. #13
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    Hi Kim,
    Thank you for all your detail. Much appreciated. It sounds like he initially benefitted, as did the other patient you mentioned. Perhaps his system couldn't take the extra strain because of the treatment? I am 51 years old, and fairly healthy, so am considering stem cell treatment. I will certainly heed your words, and get medical insurance too, if I go.
    What was the name of the clinic you went to? Probably best to avoid that clinic.
    Thanks
    Steve

  4. #14
    Forum Member Onein400's Avatar
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    Steve,

    The Phase 3 is required. Because of the plateaus you get in all als patients and variability you need about 300 patients to really show efficacy. Phase 2 was about 30 patients! So in all scientific analysis there is a way to go. Phase 3 is critical. If you want to get involved I would apply for their phase 3. It should be free for a patient as they should fund from investors etc etc.

    I would never pay for an unapproved/unproven treatment. If there was a paid for treatment that 100s of people fully recovered with I would sell my house to get it if needed!

    Please watch the video of the als ask the experts session Dec 2016. Listen to the whole session and in particular Dr Glasses second half hour and the panel questions at the end.

    https://m.youtube.com/watch?v=6YWyMyblL_U

    Lee
    Last edited by Onein400; 20th March 2017 at 10:35.

  5. #15
    Forum Member Barry52's Avatar
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    Quote Originally Posted by Steven A Williams View Post
    Hi Barry,
    Didn't Brainstorm prove the safety of stem cell treatment with their phase I and II trials? Phase III is pending at the moment.
    Thanks,
    Steve
    Hi Steve,

    Yes they are moving to phase 111 soon but the reality is that the patient group is so small that results are inconclusive according to ALS untangled. If you haven't watched the video in Lee's post I suggest you look at the second presentation stem cell therapy-the hope and the hype.

    As you point out in your post to Kim, you are fit and relatively young and this may favour you in any form of treatment. I am encouraged by current research and I believe there will be more breakthroughs in gene therapy.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  6. #16
    Forum Member Onein400's Avatar
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    Steve,

    Yes grab a coffee and watch the whole video. It's worth it.

    Things are moving and science will beat this, but we have to keep raising awareness to get more funding for pre-clinical work.

    Lee

    Lee

  7. #17
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    Hi Steve if you are young and fit I wouldn't risk the stem cells treatment. I do agree with Barry that there is a long way to go but there is the hope that it will work. It was my Dads last chance he was desperate we paid 35k for 3 weeks treatment. If it had worked it would be well worth it but you just don't know what it can do to you. This time last year my Dad hadn't even heard of MND it took over his body so rapidly that he said he just wasn't ready to die. Most MND patients with bulbar palsy die within six months he died six months and eighteen days from diagnosis. The company he used was stem cell 21. It is American company. The doctors and nursing staff were excellent but they will be for the price we paid. I haven't heard much from them since my Dad took ill!! But my Dad knew it was experimental he knew he didn't have much time left. make sure you listen to pros and cons get as much information as you can it's not something to go into lightly. My Dad did feel better for a short time but then he spent his last two months in hospital. I know the pneumonia was a big factor.
    I have also done some digging and a stem cell company in Thailand,run by overseas company, has been shut down by the government here due to a patient dying.
    At the end of the day it is a risk, but MND is terminal and people will get desperate.
    Good luck in any decision you make. Even though my Dad passed away he did not regret having the stem cells.

  8. #18
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    Anyone every been in contact with this company in Thailand? https://stemcellthailand.org/
    Any thoughts?

  9. #19
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    Hi Mikey,
    Kimmyjane below might know as her dad has stem cell in Thailand with Stem Cell 21and may have come across that one.
    Why do you ask?
    Steve

  10. #20
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    Hi Steven. My Dad has very recently (5 days ago) been diagnosed with PBP.
    He has speech/swallowing issues. His symptoms have been with for the past year.
    I'm interested to know of experiences from anyone. He is 53.

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