Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Cancer On Top Of CFS! :(

Discussion in 'General ME/CFS Discussion' started by awdbawl, Mar 19, 2014.

  1. awdbawl



    I've been diagnosed with cancer and will be needing chemo, radiation and surgery. My question is: has any other CFSer here been thru the cancer mill, and how did you fare, especially, how was your recuperation? I'm concerned about getting the "double whammy" because even when I get a cut or bruise, it takes a century to heal up (*IF* it heals---the bruises can become permanent).

    Thanx in advance for any input about this! :)
  2. adreno

    adreno PR activist

    Sorry to hear about the cancer. Hope everything goes well.

    For the bruising, are you getting enough vitamin K2? Zinc is also very necessary for wound healing.
    PatJ, awdbawl and Radio like this.
  3. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Not to suggest or recommend anything, but there are alternative cancer treatment protocols that are less traumatic on the body, some of which have helped pwCFS improve their health. You may want to consider googling Liposomal Vitamin C and cancer. I believe it can serve as a highly beneficial adjunct to whatever cancer treatment is being used, conventional or alternative. --- All the best to you, and best of luck with your treatments!
    Justin30, awdbawl and Radio like this.
  4. Wendi C

    Wendi C

    New Mexico
    I'm so very sorry to hear about your Cancer diagnosis.. I wish you well in whatever treatments you seek.

    I have to also suggest Vitamin C for bruising. I bruise way too much, too easily for a woman my age. I noticed that after a few weeks of 5,000 + mg/day that my bruising is less and heals faster.

    You will be in my thoughts..
    awdbawl likes this.
  5. Daffodil

    Daffodil Senior Member

    very sorry to hear about the cancer diagnosis. I will also suggest vitamin C. mega dose IV vitamin C can help a lot with cancer, I think, even if you take it with chemo (maybe especially if you take it with chemo).

    as for liposomal vitamin C, you can even make it at home....but I don't know if you can orally take the mega doses necessary for cancer, because of bowel issues.

    sending heartfelt positive thoughts your way.....
    awdbawl likes this.
  6. Dreambirdie

    Dreambirdie work in progress

    N. California
    You should consider investigating the treatments offered at the Burzynski Institute. There is a great video interview with him and his son included in the following Mercola article.

    "Dr. Stanislaw Burzynski is known for developing a gene-specific treatment using a combination of antineoplastons he developed to target specific cancers, conventional cancer drugs, and natural complementary strategies, including customized diets and exercise.

    Interestingly for the last few years he has also been doing a test which sequences all his cancer patients genes so he knows how to customize the program for their genetics."

    VIDEO INTERVIEW HERE (would not embed)

    awdbawl, Radio, merylg and 2 others like this.
  7. peggy-sue


    I am so sorry to hear you've had this extra whammy, it must be incredibly worrying about how you will even cope with the treatments.:(

    I read about a proper study a while back, where they were investigating giving folk on chemo Milk Thistle extract.

    They found that Milk Thistle extract really protected the liver against damage from the chemo!

    I think quite a lot of folk here use Milk Thistle extract anyway - because it helps with some ME symptoms.

    I wish I could offer you a lot more than that snippet of info. I will be thinking of you, and sending my heal-y-est wishes over the ether.
    awdbawl likes this.
  8. Esther12

    Esther12 Senior Member

    I don't want to raise false hopes, but some CFS patients have reported improvements in their CFS during cancer treatments - the recent Rituximab research was prompted by these sorts of reports. Hopefully you'll be one of the lucky ones.

    I'm not keen on a lot of the alternative medicine stuff - mainstream medicine already has a high enough tolerance for quackery with a poor evidence base - the alternative sector is even worse!

    re slow healing and bruises - are you hypermobile?

    Best of luck with everything.
    BurnA, svetoslav80, peggy-sue and 5 others like this.
  9. maryb

    maryb iherb code TAK122

    so very sorry to hear about your cancer diagnosis in addition to having CFS.
    I read about some research on milk thistle and chemo recently, very positive findings on providing protection for the liver so definitely consider adding this to your supplements. @brenda has started making her own liposomal vit c. worth a try, I'm sure she'll advise you on that. Its very expensive to buy ready made for the quantities recommended.
    good luck with your treatment whatever you decide on.
    peggy-sue and awdbawl like this.
  10. Daffodil

    Daffodil Senior Member

    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.
  11. Patrick*

    Patrick* Formerly PWCalvin

    That is absolutely heartbreaking to read. I am so sorry for your cancer diagnosis in addition to ME/CFS.
    peggy-sue and awdbawl like this.
  12. Kati

    Kati Patient in training

    I am very sorry about your new diagnosis.
    i have been a chemo RN for the last 10 years until I got sick. Chemo these days is very well tolerated and there are drugs to counteract the side effects.

    The oncology field has evolved so much in the last decades that cancers and the best evidence are used in order to treat and often time cure cancer. I recommend you listen to your doctor.

    Alternative therapy such as Burzinsky is highly worrisome to me and it is of my opinion you should thread carefully with that, because delays in chemo treatments will certainly result in progression of cancer and greater difficulty in treating it.

    Best wishes, and feel free to contact me privately if you have further questions
    Last edited: Mar 19, 2014
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  13. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    I had a very swollen lymph and hard lymph node under my right jaw last year. My ENT doctor found it by accident and he knew my condition. I have always been very elevated in all my EBV titers and he was concerned it was lymphoma. I had a "Fine Needle Aspiration" done, which was mostly inconclusive. About 3 days after the FNA my right tonsil became swollen to around golf ball size and it also became very infected. I was then sent to have PET-CT Scan which came back as my right tonsil and the large lymph node below it plus 2 associated lymph nodes showing up as cancerous.

    A week later I had a tonsillectomy and my ENT doctor told me as soon as he started removing the right tonsil that he could tell it was cancerous. I can't remember (or find) exactly how they designated the cancer on my PET-CT Scan, but it Squamous Cell Carcinoma - Stage 3.

    My treatment involved was surgery to remove both tonsils (took a very wide margin on my right tonsil and all of the margin was cancer free. I had 37 sessions of radiation therapy, which was worse than I thought it would be. It got 2 of salivary glands, so my previous dry mouth is "dry as desert dry mouth" now. Initially I lost a good bit of my facial hair on the right side, but over time it came back almost all the way. If I grow a beard now it will all come in, but you can tell that the right side is not as full as the left side. There is still a chance that it will fill in some more as my doctor at the radiation center says that a person can continue to heal for up to 2 years after treatment ends. They chose to not do any chemo on me as their reason was squamous cell carcinoma responded very well to just radiation in that area.

    If you have any other questions I'll be more than happy to try and answer them????
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  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    For interest sake have u ever had nk function test done prior to any cancer diagnosis?
    I just mention this as a few cfs guru's have mentioned higher cancer rates in cases and they say this is possibly from the low nk function. Nk cells don't just kill viral infected cells but also cancer infected cells.

    I hope everything turns out well for u and get a surprise of a cfs cure with it maybe.

    Cheers! !!
    peggy-sue likes this.
  15. Radio




    I'm sorry to hear about your cancer diagnoses as well. I do want to posted some information if you do decide to take advantage of chemo, radiation as your main treatment option. It's critical that you protect your mitochondria cells from the toxic exposure and oxidative damage of these treatments.

    Reversing Cancer Metabolic and Mitochondrial Dysfunction, Fatigueand the Adverse Effects of Cancer therapy

    Lipid replacement therapy: a Nutraceutical approach for reducing cancer-associated fatigue and the adverse effects of cancer therapy while restoring mitochondrial function.

    Lipid Replacement as an Adjunct to Therapy

    Nutritional Supplements for Cancer-Associated Fatigue and Cancer Therapy – A Molecular Basis for Restoring Mitochondrial Function
  16. Kati

    Kati Patient in training

    @August59 radiation for the oro-paharynx area (head and neck) has got to be one of the worse radiation treatments. People getting radiation for say breast cancer get away with a mere sunburn type of skin reaction.
    peggy-sue and Tristen like this.
  17. Tristen

    Tristen Senior Member

    Northern Ca. USA
    Sorry to hear of your diagnosis. Really scary to most folks. I was diagnosed with the same ca (cancer) 2 years ago and this is what I can share based on my experience:

    First off, get a second opinion with the best oncologist you can. Going to Stanford for a second opinion saved my life because they discovered very serious errors made by my local radiologists......And this radically changed my treatment approach.

    I thought the first month on treatment was a really easy....and then a cumulative effect of the radiation kicked my butt. I developed swallow and breathing difficulties, but that all cleared up after a few months. The only negative effect I'm left with is diminished I have to carry water everywhere. Not a bad price to pay for beating cancer, which I did.

    The chemo was easily tolerated while on it, but the cumulative effects that came later took several months to recover from. Mostly cognitive stuff like brain fog. This took several months to clear, but it did. I was afraid the chemo would cause an exacerbation of my me/ did not.

    Making a decision about treatment approaches should be made with your doctors and looking at all your diagnostic information. I'm very much into alternative and complimentary medicine, but for me going a full on allopathic route was the only way to go. Yea the stuff is poison, but it saved my life. Natural medicine alone would have been suicide.

    So now I'm back to dealing with just the me/ the same level I was at pre-cancer treatment. I hope all goes well for you with you journey putting it in remission. If I can help in other way, please don't hesitate to ask.
    Last edited: Mar 24, 2014
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  18. Radio


    I have this same problem with poor wound healing. Zinc helps- but the core problem is a possible sulfate deficiency. Cancer is also link to sulfate deficiency as well.

    Radio: This concludes my broadcast for today :balanced: Pay it forward and never give up!

    Sulfur, and Sulphate Reducing Bacteria – Another Piece in the Puzzle

    Could Sulfur Deficiency be a Contributing Factor in Obesity, Heart Disease, Alzheimer'sand Chronic Fatigue Syndrome?
    Last edited: Mar 20, 2014
    SickOfSickness likes this.
  19. Butydoc

    Butydoc President

    Hi Howdy,

    I'm not sure I can completely answer your question concerning wound healing, since I don't know your medical history or any other co- morbid conditions.

    In general, most people have little problem with wound healing unless they are malnourished, have an unusual genetic condition, diabetes or on certain medication which retard healing. I have treated many patients with cfs without any problems with wound healing. Generally when surgery and chemotherapy are used to treat a cancer, surgery is usually done first followed by chemotherapy three to four weeks later.

    If there is a complication from the surgery, then the chemo is delayed until the wound heals. If your are concerned about your nutritional status, then I would suggest your doctor obtain a serum prealbumin and albumin. These numbers will give you an idea about your acute and longer term nutritional status.

    Easy bruising has little to do with wound healing. Certain drugs, like aspirin and chronic steroid use can cause bruising. Advancing age also causes bruising because of capillary fragility.
    I hope this information is useful to you.

    Last edited by a moderator: Mar 20, 2014
  20. GhostGum

    GhostGum Senior Member

    Vic, AU
    Sorry to hear about your situation, hard to imagine this on top of having ME.

    Agree about being careful about alternatives and relying on conventional medicine, great advice from Tristen, but by far the best complimentary therapy going around,

    Going to abate all the sides from chemo and radiation better than any pill anyone can prescribe you, and potentially help a lot with the healing. Good luck.
    peggy-sue and barbc56 like this.

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