Cyclophosphamide

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.

 

@Milo

mele kalikimaka is Hawaiian like here

https://www.youtube.com/watch?v=hEvGKUXW0iI

or here..more entertaining

https://www.youtube.com/watch?v=Yb5e73j4NZU

 

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?

 

Agree with this 100%. Can't wait for the article(s) to be published.

 

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?

 

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.

 

https://www.medscape.com/viewarticle/907414

Chemotherapy for Relapsing-Remitting MS?

Might need to logon to access

 

https://jamanetwork.com/journals/jama/article-abstract/2720728

Link to original study

 

These are pretty strong findings

 

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

Thanks

 

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.

 

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.

 

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.

 

https://www.vox.com/2019/1/15/18182095/ms-multiple-sclerosis-stem-cell-transplant

She is usually a good journalist, but this article misses the boat I think.

 

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?

 

https://www.google.com/amp/s/www.fo...a-complete-cure-for-cancer-within-a-year/amp/

Well now that there will be a complete cure for cancer, we can load up on the cyclophosphamide.....no problem....

 

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.

 

https://www.sciencedaily.com/releases/2019/07/190701144521.htm

High doses of 60 plus-year-old chemo drug found to spur immune system attack on lymphoma

New mechanism found for cyclophosphamide for cancer treatment

 

https://www.curetoday.com/publications/cure/2018/summer-2018/lifting-the-fog-on-chemo-brain

Brain fog from chemo— interesting.

 

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