1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Cyclophosphamide

Discussion in 'Drug and supplement treatments' started by Jaybee00, Dec 23, 2018.

  1. benji

    benji Senior Member (Voting Rights)

    Messages:
    167
    Yeah, that is something to wonder about. But there are examples where low dose does work for some people with ME, like low dose nalthrexone, and gammanorm which is low dose IVIG as I understand it.
     
  2. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    MEMarge, ukxmrv and Milo like this.
  3. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    True. It could be placebo effect or natural improvement. It might also be a treatment effect. As mentioned above, it is not possible that people with ME/CFS respond to cyclo differently or at lower levels than people with cancer or rheumatic disease?
     
    MEMarge likes this.
  4. andypants

    andypants Senior Member (Voting Rights)

    Messages:
    1,334
    Location:
    Norway
    Agree with this 100%. Can't wait for the article(s) to be published.
     
  5. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    No increase in cancer incidence detected after cyclophosphamide in a French cohort of patients with progressive multiple sclerosis.
    Le Bouc R, et al. Mult Scler. 2012.
    Show full citation
    Abstract
    BACKGROUND: Cyclophosphamide is still used in progressive forms of multiple sclerosis (MS) in view of its suggested efficacy and safety in the short term. No data exist on its long-term safety in MS, particularly on the risk of malignancy.

    OBJECTIVE: The objective of this study was to evaluate cancer incidence in MS after cyclophosphamide treatment.

    METHODS: We performed a historical prospective study in a cohort of MS patients treated with cyclophosphamide. We collected demographic data and medical history from medical databases and patient interviews. Reported cancers were histologically confirmed. Cancer incidence was compared with the incidence in the general population by estimating standardized incidence ratios (SIRs).

    RESULTS: We included 354 patients, with a median follow-up of 5 years (range 2-15) after cyclophosphamide treatment. Fifteen patients developed a solid cancer, which occurred at a median of 3 years (range 0.5-14) after cyclophosphamide introduction. The cumulative incidence of cancer after cyclophosphamide was 3.1% at 5 years and 5.9% at 8 years. We found no increase in cancer incidence after cyclophosphamide treatment in men (SIR = 0.83, 95% confidence interval [CI] 0.30-1.82), women (SIR = 0.99, 95% CI 0.43-1.95), or men and women combined (SIR = 0.92, 95% CI 0.50-1.54).

    CONCLUSION: We found no evidence of an increased risk of cancer associated with cyclophosphamide treatment in MS patients.

    PMID
    21844065 [Indexed for MEDLINE]


    Maybe need to follow up for longer ~20 years?
     
    Hutan, Sarah94, ScottTriGuy and 3 others like this.
  6. TrixieStix

    TrixieStix Senior Member (Voting Rights)

    Messages:
    245
    I was talking more generally in terms of "chemo drugs" that are used outside of cancer as the post I was replying to seemed to be making a more general statement about not being open to the idea of taking a "chemo drug". My point was just that not all "chemo drugs" are to be feared.
     
  7. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    Last edited by a moderator: Jan 17, 2019
    ladycatlover and Webdog like this.
  8. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
  9. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    These are pretty strong findings
     
    ukxmrv likes this.
  10. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    @Jonathan Edwards, interested in your opinion of this JAMA study ( for ms, not Cfs).

    Thanks
     
    MEMarge likes this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,267
    Location:
    London, UK
    I think we have known for twenty years that doses of cyclophosphamide of this sort will have major short term effects on MS but the problem is long term tolerability. (I am not sure the stem cells do much other than speed up marrow recovery.)

    I think this is an old fashioned approach that has been looked at enough. We want safe tolerable targeted therapies rather than old fashioned poisons like cyclo that tell us little about mechanism and are ver unpleasant and short lived in effect.
     
    Mij, ladycatlover, TrixieStix and 8 others like this.
  12. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    But it seems to be long-lasting—they didn’t want to use the word cure. Stem cells might not be needed—authors mention this.
     
    Sarah94 and ladycatlover like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,267
    Location:
    London, UK
    All past evidence indicates that benefit can last unto about five years but not longer. That is not enough to be a useful result in the context o this sort of treatment with all its problems.
     
    TrixieStix, ladycatlover and Trish like this.
  14. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
  15. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    Ok I’m confused... if the actual treatment is the [temporary] destruction of the immune system, then why are the stem cells needed? Are there diseases where the stem cells are needed to reboot the immune system?
     
  16. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    MEMarge likes this.
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,267
    Location:
    London, UK
    If you destroy enough of the immune system, including the bone marrow stem cells, you need to put some back. Otherwise, with high dose ablation, you die of infection in the first few weeks. This is standard for a lot of ablation therapies for malignant disease. Most 'stem cell treatment' is not stem cell treatment but ablative treatment with stem cells used to start the defence systems up again in a safe time frame.
     
  18. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    andypants, shak8 and MEMarge like this.
  19. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
  20. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    In his recent talk at Stanford, Dr. Fluge mentioned (I think) that the cyclophosphamide open trial will need to be followed up with a RCT trial. @Jonathan Edwards mentioned previously that it is not possible to blind a cyclophosphamide trial because it induces severe nausea. So what to do?

    Can a placebo incorporate a benign nausea- inducing agent (is there such a thing)?

    Thanks
     
    Sarah94, andypants and ukxmrv like this.

Share This Page