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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Chemotherapy remissions

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2,087
There seems to be a few stories in different threads of patients going into remission after chemotherapy.

I thought I would create a thread specifically for this topic, it would be interesting to hear from people who did and didn't respond to chemotherapy and what the chemotherapy treatment was.
 
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2,087
It's not just rituximab either. I know of a case of longstanding (childhood onset) ME/CFS + FM who had a two-year remission after cyclophosphamide + something else for breast cancer. None of her doctors showed the slightest bit of interest in the fact that her chronic fatigue and pain were gone for two years after this seemingly unrelated treatment. Most doctors are not like Fluge and Mella.

also not wanting to raise false hopes but my friend knows a woman who had CFS for years, followed by breast cancer. interestingly. she experienced a remission from CFS lasting many many years after her breast cancer treatments.

Hi Andrew,
I took epirubicin, 5FU and cytoxan.

This is a fascinating line of research. I believe that CFS will in fact be found to have genomic instability as a possible effect of the disease process. But one thing puzzles me, and that is: How do some people with CFS get better? When I was undergoing treatment for cancer and received both chemotherapy and radiation, I got BETTER.

Presumably, both of these things would likely promote even MORE genomic instability, wouldn't they? Is it possible that chemo wipes out a whole batch of faulty cells and thus leaves more cells that tend to function more normally?

We know that some people improve, for example, with the methylation supplements. Is it possible that the real effect has less to do with raising levels of glutathione and more to do with silencing genes that have been "misplaced?"

Bottom line, this may be the undeniable evidence that we all crave, but what does it say in terms of treatment, if anything at all???
 

whodathunkit

Senior Member
Messages
1,160
I've never had chemo, but chiming in that I suspect that CFS and particularly ME has to do with the critters (viruses, bacterium, microbes, whathaveyou) that live in us as much as genetics. So maybe chemo kills the critters, thus allow some people to get better.
 

Old Bones

Senior Member
Messages
808
. . . it would be interesting to hear from people who did and didn't respond to chemotherapy and what the chemotherapy treatment was.

Approximately five years ago (and 20+ years after my ME onset) I was diagnosed with Rheumatoid Arthritis. Like my ME, onset was sudden -- I went to bed feeling "typical for me", and awoke with excruciating joint pain, and so stiff I could barely get out of bed. Several months later when I had almost completely lost the use of my hands, I was prescribed a weekly low-dose of oral Methotrexate (10 mg initially, then increased to 15 mg, and currently a maintenance dose of 12.5 mg). For the first three weeks on this drug, I felt better than I had in years. I slept better, and had more energy/endurance. I was feeling quite hopeful. Unfortunately, the improvements didn't last, and I was soon back to my usual level of functioning, which since then has continued to go downhill.
 
Messages
758
Location
Israel
What a fascinating thread.
I read that the CFIDS Foundation believes that M.E is an autoimmune disease and is connected to cancer.

I personally believe this illness is autoimmune.

2 papers that about the link to cancer were completely ignored by the media. The first paper I was sent by the head of the CFIDS Foundation.

Chronic fatigue syndrome and subsequent risk of cancer among elderly US adults.
http://www.ncbi.nlm.nih.gov/pubmed/22648858
CFS associated with increase in Non Hodgkin Lymphoma

http://ar.iiarjournals.org/content/29/11/4717.full
Immunological Similarities between Cancer and Chronic Fatigue Syndrome: The Common Link to Fatigue?

I am intrigued with @Old Bones experience. Could it be that there are drugs for rheumatoid arthritis, not only cancer, that could help us, and are just waiting to be tried out? even if they just give transient remissions.

I hope others who have had chemotherapy answer this thread.
 
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2,087
I found this post on a breastcancercare forum

I suffered from moderate chronic fatigue syndrome (otherwise known as ME)for over 15 years. I had sickly tiredness all the time, never got more than three hours sleep in any one go, had severe, intermittent joint pains, and had word 'blindness'. I took daily doses of amitriptyline. Since I have had chemotherapy (8 sessions that finished January 08) my CFS symptoms have all but disappeared.
I know the CFS symptoms sound very similar to Tamoxifen side effects, of which I do get a few, but they feel very different to CFS. I still only sleep in short spells due to night sweats but I don't get the sickly tiredness any more - in fact I have more energy than I've had in years. I no longer take amitriptyline.
Are there any other CFS sufferers out there who have noticed chemo has improved their symptoms? ( I just wondered if chemo may be a cure/help to severe CFS/ME sufferes).

Interesting.
 

Violeta

Senior Member
Messages
2,843

Violeta

Senior Member
Messages
2,843
I am intrigued with @Old Bones experience. Could it be that there are drugs for rheumatoid arthritis, not only cancer, that could help us, and are just waiting to be tried out? even if they just give transient remissions.


http://www.hindawi.com/journals/jir/2013/535738/

This review focuses on systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), and Sjögren’s syndrome (SS) and sum up the existing data linking EBV with these diseases including elevated titres of EBV antibodies, reduced T-cell defence against EBV, and elevated EBV viral load.
 

Gingergrrl

Senior Member
Messages
16,171
Great thread and I am now starting to be convinced (at least in my own case) of a link between an ME/CFS type illness and auto-antibodies that link to paraneoplastic syndromes and cancer (even though I do not have cancer at this time.) Maybe this is why certain chemo or immunosuppressant treatments work for some people.

I think ME/CFS is an endless collection of sub-groups and this is why different people react so incredibly different to meds or even supplements. I no longer believe it is just one monolithic illness with one single treatment. Although the process is moving slower than molasses, I may end up trying a chemo type med some day to try to knock out these ion channelopathy auto-antibodies (I hope that is the right word?!!)

ETA: This relates in my case: http://phoenixrising.me/research-2/...annelopathy-in-chronic-fatigue-syndrome-mecfs
 
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wastwater

Senior Member
Messages
1,267
Location
uk
Good thread,I may link into this through 13q14
BRCA2 is at 13q12
 
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