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Poll: would you take cyclophosphamide?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jaybee00, May 24, 2020.

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If cyclophosphamide was available to you now outside of a clinical trial, would you take it?

  1. Yes

    2 vote(s)
    6.5%
  2. Yes, but only if I tested positive for the risk alleles HLA-DQB1 and/or HLA-C (83% response)

    0 vote(s)
    0.0%
  3. No, but would be willing to take cyclophosphamide if it was part of an approved clinical trial

    3 vote(s)
    9.7%
  4. No, my MECFS is not that bad or is improving over time

    1 vote(s)
    3.2%
  5. No, I have severe/v.severe MECFS, and study found no benefit for S/VS

    3 vote(s)
    9.7%
  6. No, I want to wait for a Phase 3 trial,because I do not believe that the findings will stand

    16 vote(s)
    51.6%
  7. No, I am too frightened of acute (short-term effects) of cyclophosphamide (nausea, hair loss, etc.)

    8 vote(s)
    25.8%
  8. No, I am too frightened of long-term effects of cyclo (possible increased cancer risks, etc)

    15 vote(s)
    48.4%
  9. No, I am not impressed with the overall response rate of the trial (55%)

    4 vote(s)
    12.9%
  10. No, I am not impressed with the level of improvement (doubling of SF-36 in responders)

    3 vote(s)
    9.7%
  11. No, I am not impressed with the duration of improvement (15/22 respond. in remission at 38-48 mon.)

    2 vote(s)
    6.5%
  12. No, I believe there will be more benign treatments available in the next 10 years, and want to wait

    1 vote(s)
    3.2%
Multiple votes are allowed.
  1. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    If cyclophosphamide was available to you now free of charge or at very low cost, outside of a clinical trial, would you pursue this treatment?

    Yes (or yes after Covid is under control)

    Yes, but only if I tested positive for the risk alleles HLA-DQB1*03:03 and/or HLA-C*07:04 (83% response rate)

    No, but would be willing to take cyclophosphamide if it was part of an approved clinical trial

    No, my MECFS is not that bad or my MECFS is improving over time

    No, I have severe/very severe MECFS, and this study indicated that there was no treatment benefit for patients in this category

    No, I want to wait for a Phase 3 trial to be completed because I do not believe that the current findings will stand with a RCT/blinding

    No, I am too frightened of acute (short-term effects) of cyclophosphamide (nausea, hair loss, etc.)

    No, I am too frightened of long-term effects of cyclophosphamide (possible increased cancer risks, etc.)

    No, I am not impressed with the overall response rate of the trial (55%)

    No, I am not impressed with the level of improvement (doubling of SF-36 Physical function among responders)

    No, I am not impressed with the duration of improvement (15/22 responders in remission at 38-48 months)

    No, I believe there will be more benign treatments available to patients in the next 5-10 years, and am willing to wait
     
    alktipping, DokaGirl and sebaaa like this.
  2. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I've never heard of cyclophosphamide. A quick web search shows it is a chemotherapy drug. Why should anyone want to take it unless they have cancer?
     
  3. Trish

    Trish Moderator Staff Member

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  4. Tia

    Tia Senior Member (Voting Rights)

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    I chose:

    No, I want to wait for a Phase 3 trial,because I do not believe that the findings will stand

    - More because of the first part - I would never take anything based on one phase 2 trial, especially not a really toxic chemo drug. That would surely be crazy however desperate we all are. I've been ill long enough to see different treatments attracting attention. Every time I've been cautious and waited to see how they turn out and every single time I have eventually been glad I did so. Jumping the gun out of desperation has made many people who thought it was impossible they could get any worse, get worse. I don't know enough about science to predict whether the findings will stand.

    I also chose

    No, I am too frightened of long-term effects of cyclo (possible increased cancer risks, etc)

    And I think we all should be. There is no way I'd mess around with drugs like this without plenty of evidence to back it up and a very experienced Dr to administer. I really hope private clinics in US don't start offering it as they did with Rx before there is proper evidence.

    I would also add to this that I would be equally afraid of it making my ME worse long-term.

    I would potentially choose this one in the future:

    Yes, but only if I tested positive for the risk alleles HLA-DQB1*03:03 and/or HLA-C*07:04 (83% response rate)

    I think that a positive to come out of this research be that it could help isolate sub-groups and this could be one. (This is my laywoman's interpretation, I don't really understand what these alleles are... I mean I know A level biology what 'alleles' are but that's it! If anyone would like to explain more in A level biology language if that's possible I'd be interested!)



     
    Philipp, Wits_End, MeSci and 9 others like this.
  5. Wonko

    Wonko Senior Member (Voting Rights)

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    I live in quite a small room with quite a large elephant.

    Most of my resources are used in keeping the elephant 'happy'.

    Things can't get too loud (as elephants get distressed by loud noises), or too bright, and it must be fed, watered and tidied up after.

    The elephant is not totally comfortable with my close presence in the room with it, so movement must be kept to a minimum to avoid alarming or upsetting it.

    An unhappy elephant typically responds to my presence by pretending I don't exist, by sitting on me, or any other means that remove me from it's line of sight.

    This can be inconvenient.

    Just to be clear - you are asking if I wish to feed my elephant something that I know will make it feel quite ill and unhappy - giving me more elephant 'products' to clean up, at the same time as the elephant will have less tolerance to my moving around it, which will be necessary in order to clean up all the extra ES an ill, unhappy, and upset elephant will inevitably produce. An elephant that will, with some justification, blame me for how it's feeling?

    So much more being squished in ES.

    * ES - closely related to BS - just from an elephant.

    On the small chance that this may, after some years, make my elephant 15% smaller.

    Yeah - lets go for that........
     
    Last edited: May 24, 2020
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  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    DokaGirl, alktipping and Trish like this.
  7. Andy

    Andy Committee Member & Outreach

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    Well I would have voted for "No, I want to wait for a Phase 3 trial and see what the result of that is", but that isn't an option.
     
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  8. mango

    mango Senior Member (Voting Rights)

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    I would wait for the results of a severe/very severe ME phase 3 trial.
     
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  9. shak8

    shak8 Senior Member (Voting Rights)

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    No. As a nurse, I had a patient with cancer who was taking it. Somehow, if it's used for cancer treatment, it scares me away.
     
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  10. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Squeezy, DokaGirl and alktipping like this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Chemotherapy just means drug therapy as opposed to surgery or radiotherapy. All drugs are chemotherapy. We talk of chemotherapy for TB for instance. Chemotherapy has nothing specific to do with cancer.

    Admittedly cyclophosphamide is used for cancer because it kills unwanted cells, and the way it does it is indirectly related to its side effects - which are the reason for concern. But being a 'chemotherapy drug' is not relevant. One of the problems with getting USA physicians to use rituximab for RA, where it works very well, is that they thought it was a 'chemotherapy drug" (i.e. they didn't know what the word meant either). Humira is just as much chemotherapy but it is not used for cancer so they thought that was OK despite it having worse side effects. The other reason US physicians did not like rituximab is that it did not bring in enough infusion fees.
     
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  12. Kitty

    Kitty Senior Member (Voting Rights)

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    I think my response would be that I'd only consider taking a drug with the risk profile of cyclophosphamide if I knew why it was being used.

    If we understood the basis of the problem we were trying to fix; if we had a fairly reliable way to identify which patients have it; if trials had shown the drug is a viable way to treat it; and if there were no less toxic options; then the risks might well be reasonable for some patients.

    From my (admittedly limited) understanding, it doesn't look reasonable at the moment.
     
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