Would you take cyclophosphamide?

[jaybee00]

Given that cyclophosphamide is the only medication that has a modicum of evidence for actually treating MECFS over a long term period, and given the risks of this treatment, would you take it?

https://forums.phoenixrising.me/thr...rekeland-fluge-mella-2020.80066/#post-2273983

(my answer is yes)

 

[Hip]

I think you would have to look into the cancer risks before you answer that question.

Just found this paper which says:

Cyclophosphamide therapy in idiopathic membranous nephropathy gives a threefold increase in cancer risk. For the average patient, this finding translates into an increase in annual risk from approximately 0.3% to 1.0%.

If the annual risk of developing cancer is normally 0.3%, then the normal risk of getting cancer over a 30 year period would be 30 x 0.3 = 9%. One you take cyclophosphamide, the risk it seems goes up to 30%.

Put another way, if you take 10 people, on average you would expect one of them (9%) to develop cancer over the next 30 years. But for 10 people who have taken cyclophosphamide, you would expect 3 of them (30%) to develop cancer of the next 30 years.



I am not sure how the doses of cyclophosphamide used in that paper compare to the doses used for ME/CFS.

 

[jaybee00]

There is an increased risk of bladder cancer.

But there are hundreds of treatments for cancer and zero for MECFS

 

[Wishful]

Yes, but the study was for ME patients who also had cancer. The reduction in ME symptoms might have been from treating the cancer, or some other factor related to having cancer. You might wait until someone does a study on its effectiveness on ME patients without cancer.

For me, the answer is "no". Given that we all respond differently to treatments, the study doesn't convince me that it would work for me. I'd rate its chance of success for me as about the same as jellybeans (wide selection, with lots of weird chemicals): a trivial chance of success.

 

[jaybee00]

study was for ME patients who also had cancer.

No! This is not true. No one is this study (phase 2) had any type of cancer. Response rate was very high, especially for those patients with the 2 HLA risk alleles.

https://www.frontiersin.org/articles/10.3389/fmed.2020.00162/full

 

[YippeeKi YOW !!]

I was given cyclophosphamide as part of a massive chemo cocktail. Can't say I enjoyed it but then there were about 7 other compnents, so who knows.

Some of the side effects of it are a decrease in your blood count, liver problems, hair loss and mouth ulcers.

Don't think Id want to spin the chamber on this one.

As an aside, my ME started post chemo .....

 

[Wishful]

I checked the link to the non-cancer study and wasn't really impressed with the findings. Making half the patients a bit better (but by no means well) doesn't seem worth the risk of adverse effects. If it cured a reasonable percentage of the patients, I'd be interested, but minor improvements won't make much difference for me. Maybe it would be worth the risk for a severe patient.

 

[jaybee00]

At baseline, only two of the responders had part-time work participation. During follow-up, at least nine out of 22 responders returned to either part-time of full-time work or studies.

That’s pretty good— something that will cure and is benign—probably 30 years away.

How many “cures” have been found for MS and RA?

 

[YippeeKi YOW !!]

How many “cures” have been found for MS and RA?

How many cures have been found for anything ????

Well, except for cancer, and the 'cure' will really kick your ass. And your ass's ass .... and the ass of the ass your ass's ass rode in on .... but if it works, you're cured. Pretty much.

Most 'treatments' are aimed at controlling or covering up symptoms, in the quaint belief that if they can make those go away, you're good to go, the best part being that you'll need to be 'treated' over and over and over again, to the delight of both the treating Drs and the pharma companies.

And as many of us have learned, those 'treatments' frequently come with a lot of interesting side-effects. And to the unending delight of the treating Drs and the pharma companies, those side effects will need 'treatment' as well.

The circle of life ....

 

[Wishful]

How many cures have been found for anything ????

I think quite a few. Just for my ME, I've managed to cure neuropathic muscle aches, physically-induced PEM, and type IV food sensitivity. All by accident, but fully cured.

I agree about the health industry preferring lifetime daily treatments rather than cures, but some researchers manage to come up with cures anyway and publish them before they can be hidden.

 

[YippeeKi YOW !!]

I've managed to cure neuropathic muscle aches, physically-induced PEM, and type IV food sensitivity. All by accident, but fully cured.

Time is the only reliable indicator of that, but I truly hope that you're right .... and ' .... by accident ....' is pretty much the only way I've been able to improve. By accident, and by endless, usuaslly disappointing trial and error.

I agree about the health industry preferring lifetime daily treatments rather than cures, but some researchers manage to come up with cures anyway and publish them before they can be hidden.

I'm genuinely interested in knowing what the cures were for, and what the cure consists of. This isn't snark. It would be a hopeful beacon ...