Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

Discussion in 'Rituximab: News and Research' started by deleder2k, May 27, 2015.

  1. BurnA

    BurnA Senior Member

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    The last person would have got treatment in June according to website.
     
  2. Snow Leopard

    Snow Leopard Hibernating

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    What I mean is: if they don't think it's a viable treatment due to the side effects, they'd choose not to wait for the follow up and publishing the data they have.
     
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  3. BurnA

    BurnA Senior Member

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    I don't think it would be related to side effects.
    The only way I could see them changing the follow up period would be if nobody responded or everyone who did respond relapsed within the follow up period.
     
  4. NL93

    NL93 Senior Member

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    New info

    https://helse-bergen.no/seksjon-eng...atment and medical physics/sider/cyclome.aspx

     
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  5. deleder2k

    deleder2k Senior Member

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    Should be we interpret that as a 40+% response rate in Part A? I do.
     
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  6. A.B.

    A.B. Senior Member

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    Says so right here.

    Why adjust the protocol though?
     
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  7. NL93

    NL93 Senior Member

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    They will also extend the follow up by 6 months.

    I would guess they have a 40+% response rate, but maybe some participants had some nasty side effects and/or relapses in their disease.
    They seem to be taking an extra careful approach with part B.
     
  8. BurnA

    BurnA Senior Member

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    Would the extension of the follow up of part A by 6 months imply that all responders haven't relapsed yet ?
     
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  9. BurnA

    BurnA Senior Member

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    I do too.
    Maybe the dosage quantity or frequency needs to be adjusted based on their learnings from part A. ?
     
  10. Mariah

    Mariah Senior Member

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    I would guess that at lest part of modifying the protocol has to do with some severe side effects experienced by some participants, and that they have to be more careful with the severly ill. I know two people who participated. One got so ill she had to withdraw from the study, and another finished it because she wanted to stay true to her commitment, but had no response and also had severe side effects and worsening of symptoms of which she has not recovered from yet. This is not a drug to be messed with, but anxious to see results. I heard preliminiary findings will be presented this fall, but no paper until next year.
     
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  11. Riley

    Riley Senior Member

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    :confused: How come success stories never make their way to the forums?
     
  12. Snow Leopard

    Snow Leopard Hibernating

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    Sad to hear this, but it doesn't surprise me. This drug is known for it's side effects...
     
  13. Mariah

    Mariah Senior Member

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    @Riley Guessing that those that are better have better things to do than hang around the forums now, don't know ;-). A positive note: My Rituximab doctor had three patients who didn't respond to Rituximab at Haukeland. They all responded to Cyclo, so somebody did respond :).
     
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  14. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Very few norwegians on this board, and the cyclo-participants don`t talk about it on the norwegian facebook-groups either.
     
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  15. Mariah

    Mariah Senior Member

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    We do talk amongst ourselves though, and word travels. I think that`s a positive thing.
     
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  16. BurnA

    BurnA Senior Member

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    I think this is potentially huge, a second treatment option and another possibility to understand this disease better.

    Hopefully they can do enough studies to understand why some respond to rtx or cyclo or none...
     
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  17. Mariah

    Mariah Senior Member

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    Very uplifting yes! And hopefully will lead to even more treatment options for people like my friend who is still worse from the cyclo and who also didn`t respond to Rituxan. I myself did not respond to Rituxan, and my hope is to try cyclo privately within the next year. Think it all depends on when they are presenting preliminary results, so very anxious to find out!
     
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  18. ukxmrv

    ukxmrv Senior Member

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    Hi @Mariah,

    Sorry to hear about your friends. It was a huge sacrifice for them to be the guinea pigs on this study and we owe them our thanks

    How long ago was there last Cyclo infusion and what side effects are they suffering from?
     
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  19. BurnA

    BurnA Senior Member

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    Don't Fluge and Mella have some conferences coming up - does anyone expect them to share any details soon ?
     
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  20. Mariah

    Mariah Senior Member

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    @ukxmrv Yes, we owe them a lot. Some of these drugs take huge tolls on the body. I don`t know how much I can speak in detail about this, but since it was an open study, and I reckon none of the participants are on this forum, it`s fine to share a little.

    The first friend I mentioned withdrew from the study after I think two infusions. She described feeling extremely nauseas, that her body was on fire and that she couldn`t sit upright most of the time. She recovered from the worst, maybe because she stopped so early. The other one completed the course, and she had the last infusion I think in january. Her reactions was more of a general worsening of the ME itself, she describes being able to take an hour long drive before and after the treatment barely being able to sit up for ten minutes. The stamina was much affected. She also got some extra symptoms and described loosing a lot of hair, which the last one I think is normal with this kind of treatment. I just spoke to her, and she has only now started to improve a little bit, but still much worse than she was. Hopefully she will get back to "baseline".

    @BurnA I don`t know anything spesific. The reason I mention this fall is that my Rituxan doctor said that they may be able to offer Cyclo treatment too, but "not before he had seen more data which he expected this fall." So there must be some presentation or preliminary paper or sharing of data on the way?
     
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