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Many Cancer Survivors Can't Shake Pain, Fatigue, Insomnia, Foggy Brain

Discussion in 'Other Health News and Research' started by Waverunner, Jun 5, 2011.

  1. Waverunner

    Waverunner Senior Member

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    The symptom similarities between cancer survivors and CFS patients are astounding. What I find distinctive of the problems our current medical system finds itself in, is the fact that although everyone knows that these cancer patients have real fatigue, cognitive impairment, sleep problems etc. the medical field does NOT seem interested to find the cause or a treatment. It is even more astounding that instead of finding the cause and working on proper treatments most doctors prefer NOT to look deeper into this field BUT rather prescribe graded exercise and cognitive behavioral therapy.

    http://www.sciencedaily.com/releases/2011/06/110603161822.htm

    "ScienceDaily (June 4, 2011) When people finish treatment for cancer, they want to bounce back to their former vital selves as quickly as possible. But a new Northwestern Medicine study -- one of the largest survivor studies ever conducted -- shows many survivors still suffer moderate to severe problems with pain, fatigue, sleep, memory and concentration three to five years after treatment has ended.

    "We were surprised to see how prevalent these symptoms still are," said study co-investigator Lynne Wagner, an associate professor of medical social sciences at Northwestern University Feinberg School of Medicine and a clinical health psychologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. "This is one of the first looks at what's really happening for survivors in terms of symptoms and treatment among community-based treatment settings across the U.S."
    The persistent pain in survivors who are cancer-free and no longer receiving any treatment is particularly puzzling, Wagner noted, because good treatment exists. "It seems we haven't come a long way in managing pain despite a lot of medical advances, " she said. "This is eye opening. It tells us we need to be better in clinical practice about managing our survivors' pain."
    Wagner is presenting the findings at the 2011 American Society of Clinical Oncology Annual Meeting in Chicago. June 5 is National Cancer Survivors Day.
    Cancer survivors seem to slip through the cracks in healthcare in terms of getting treatment for their pain and other symptoms.
    "We don't have a great system to provide care to cancer survivors," Wagner said. "Cancer survivors are left trying to put the pieces together to find optimal care. They ideally need to see someone who is knowledgeable about the long-term affects of treatment." She pointed to the example of the STAR (Survivors Taking Action & Responsibility) Survivorship Program at Lurie Cancer Center, a comprehensive long-term follow-up program for survivors of pediatric cancer.
    The study included a sample of 248 survivors of breast, colorectal, lung and prostate cancer. The survivors were primarily female and white, and most were more than five years post-diagnosis. They also had been treated in community settings -- where 80 percent of people with cancer are treated in the United States -- as opposed to academic medical centers. This group best represents the typical experience of cancer survivors around the country, Wagner said.
    The most common symptoms reported by survivors were fatigue (16 percent), disturbed sleep (15 percent), cognitive difficulties (13 percent) and pain (13 percent.)
    Survivors need education programs for transitioning from treatment to life as a cancer survivor, and this education should include skills for managing these difficult and chronic symptoms, Wagner said. Medical providers also need to be educated about survivors' lingering symptoms.
    "It is acceptable for someone actively going through cancer treatment to have pain medications, but when they transition to being survivors, that acceptance goes away," Wagner said. "If they ask for pain medication again, doctors may worry that they are getting addicted."
    The study also pointed out the need to develop better ways to address sleep problems, fatigue and lasting difficulties with memory and concentration. Non-drug interventions for improving sleep are effective, Wagner said, and researchers need to tailor these for cancer survivors.
    Exercise is the most effective weapon against cancer-related fatigue, but it's challenging to adhere to an exercise regime when you don't feel well. "We need to see how we can be more effective in promoting physical activity among survivors," Wagner said.
    Researchers also documented any treatment interventions for study participants' symptoms and then repeated an assessment of the symptoms four weeks later.
    "We generally found the same severity of these symptoms one month later, suggesting they tend to be chronic," Wagner said.
    The study stemmed from a 2002 National Cancer Institute meeting on pain, fatigue and depression in cancer. Participants concluded more research was needed on the prevalence of these symptoms.
    The study was funded by the Eastern Cooperative Oncology Group, which is funded primarily by the National Institute of Cancer.
     
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  2. determined

    determined Senior Member

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    In my experience with both cancer treatment and a long history of CFS, the types of fatigue are nothing alike. For me, the fatigue of CFS is a flu-like weakness; even simple acts like combing my hair or trying to move a crayon across a paper while coloring with a child were difficult. I had both chemotherapy and radiation and LOTs of surgeries. There was a day or two with radiation that I had some "sleepy" type of fatigue, but that was it. I actually felt much better in regard to fatigue on chemo since my CFS fatigue/weakness seemed to disappear for 18 months or so.....

    The chemo brain is very similar to that which I've experienced with fibro/CFS, however.
     
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  3. Waverunner

    Waverunner Senior Member

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    Did you have CFS before cancer and did your CFS symptoms improve after chemo? I heard of a few PWCs who improved after chemo.
     
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    this is very interesting, particularly because of this article:

    Meeus M, Mistiaen W, Lambrecht L, Nijs J. "Immunological similarities between cancer and chronic fatigue syndrome: the common link to fatigue?" Anticancer Res. 2009 Nov;29(11):4717-26. Review. PMID: 20032425

     
  5. determined

    determined Senior Member

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    Hi Waverunner. Yes, the CFS came a very long time before the cancer. The chemo treatments made a big difference, in a good way, with my CFS fatigue.

    Rich has speculated that the improvement may have been due to the folinic acid that they probably gave me along with treatment.
     
  6. currer

    currer Senior Member

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    Cancer is a term used for diseases which are very different in cause and development. It is a shame that these articles are not more specific on which cancers thay are discussing.
     
  7. ahimsa

    ahimsa Sick since 1990

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    This matches what little I know about cancer. Maybe it depends on the type of cancer as to whether the fatigue is extremely disabling or not? Because I know several people who have gone through cancer treatment and even while on chemo they were more highly functioning than myself (e.g., able to work at least part time). And I'm not even one of the most severe ME/CFS cases (I'm not able to work but I'm not housebound).

    One of my friends is a 7 time cancer survivor (ovarian cancer, breast cancer, and others? or reccurence of the same types? don't know all the details). Seriously, it's hard to believe, but she has been treated for cancer seven times and she has managed to survive. This has been going on for 20+ years, I think, since her first cancer diagnosis.

    I don't know all the details. We're friends but not really that close (plus I'm sure that some things she has told me and I have forgotten). I do know that she has been through h*ll with surgeries, chemo, radiation, and continuous tracking to see whether the cancer comes back and then fighting it again.

    And yet, in spite of that, she has always been able to run rings around me when it comes to being able to function. She never had to stop work while having chemotherapy (just took a some time off on treatment days, I think?). Plus, she is older than I am (I'm 50, she's 10-15? years older) and she is still able to run around doing errands, taking trips, and so on. So, while she has had a really tough time, and I would never want to diminish the difficulty that she has had from getting cancer (the ovarian cancer had a very high risk of death I think), she is able to do so much more than I can. I wish I could be that functional.

    It seems to me that at least for some types of cancer the post-chemo fatigue is not that debilitating. Or maybe she is some kind of super-woman? (just kidding) At any rate, I wish I could do half as much as she does.
     
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    the people I know that did have fatigue with cancer which prevented them from doing things, going places, or even getting around the house, died, mostly from blood and lymph cancers, but one with breast cancer. some children, my cousin a decade or so older than me, and my grandad, and my great aunt.
     
  9. Waverunner

    Waverunner Senior Member

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    A doctor told me the same about two of his patients. WillowJ posted a very interesting study about it.
     
  10. Learner1

    Learner1 Professional Patient

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    This seems to be an old thread, but it's closest to my situation, so I'll try to resurrect it.

    I didn't have CFS prior to surgery and chemotherapy for stage 3 uterine cancer. I was in fantastic physical shape and didn't fit the profile for my cancer, I was younger and thinner.

    However, I had crappy methylation genes, celiac and multiple food allergies, Hashimotos and a history of sinus infections. My cancer markers went down quickly with the conventional and integrative treatment - I had high dose vitamin C, glutathione, methylation support, etc.

    My severe fatigue kept lingering. My doctor found I was very toxic, mitochondria (which my chemo drugs specifically targeted) didn't seem to be working well, and immune system was suppressed - I have 5 chronic bacterial and viral infections that have likely been in me for years, but are now running wild. I need 10mg a day of MB12 and vast amounts of other supplements to function at all.

    So, the cancer treatment gave me full blown CFS. I'm stunned that chemo could help anyone improve, unless it managed to kill a chronic infection, which it sure didn't in my case. My doctors are very concerned, and have only seen a few patients ever as sick as I am after treatment.

    I am familiar with the Maes paper, and have looked high and low in the cancer world to see if CFS after cancer is on anyone's radar screen, as well as on this website... with 50% of men and 40% of women getting cancer, I cannot believe I'm alone.

    Is no one studying this? Are former cancer patients not a subset of CFS patients? Thomas Seyfried wrote a 2010 paper, Cancer as a Metabolic Disease, which describes mitochondrial and immune dysfunction as drivers of cancer, as well as disturbed glucose metabolism. These track with the metabolomics work I've seen on CFS in the past few months.

    But, in the CFS world, I'm not seeing serious scientific discussion about the relationship to cancer while the cancer world thinks chemo brain and fatigue will just go away on their own.

    Meanwhile, I continue to be cancer free for now, but too exhausted and brain fogged to enjoy life. The cancer people aren't interested and I don't see anyone in the CFS world experiencing this or having a useful discussion.

    Do any of you have more recent information or thoughts about cancer and CFS? And, as I'm new, is this the way to start a discussion like this, it should I handle this another way?

    Many thanks!
     
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  11. wastwater

    wastwater Senior Member

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    I saw a study on people treated with interleukin 2 that had varying long lasting effects from it.
    Tumour suppressor genes is another area of interest.
     
  12. Kati

    Kati Patient in training

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    Hello @Learner1, welcome to the forums. I was a chemo nurse before I got sick. I also happen to have 'the disease'.

    These symptoms seem to be associated with ME/CFS. Many here got sick following surgery or a stressful event and by stressful it can be as much pusical as emotional stress (car accident for instance). I suspect we all have a certain genetic predisposition. We don't know which one yet.

    Chemo would not kill a chronic infection. The one drug, Rituximab is less of a cytotoxic chemo and more like a targeted therapy. Its effect is thought to eliminate some auto-antibodies however it is not 100% sure.

    Former cancer patients are rather rare and oftentime, issues following chemo are usually dealt with by oncologists. Unfortunately thouh, physicians at large are usually very helpless when it comes to fatigue and symptoms like ours, and many cannot even connect the dots.

    It maybe helpful to consult with a ME specialist. Drs Klimas, Bateman, Levine, Kogelnik, Kaufman, Peterson come to mind.

    Sending best wishes, and congratulations on being cancer free.
     
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  13. Learner1

    Learner1 Professional Patient

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    Thank you, Kati.

    My oncologist is not interested in helping me with my fatigue. He thinks I'm a "miracle patient" due to my being cured, while ignoring my lymphedema and my being curled up in an exhausted heap mumbling answers to his questions.

    I've been to 3 MDs, a post-cancer specialist, an immunologist, and a liver doctor, who all said I had chronic fatigue, but didn't know how to help me. The vaunted Seattle Cancer Care Alliance can't find anyone for me to see. I've been waiting to see a neurologist at U Washington who specializes in mitochondrial dysfunction for 8 months and have still not gotten an appointment.

    Cancer survivors are not rare at all, they're quite common. And it's well documented that a significant percent of survivors have fatigue that can last for years. They're basically just left to rot, from what I can see.

    I see CFS lacks money for research, while cancer gets billions of dollars. Is there possibly an opportunity here to piggyback or dovetail efforts? Cancer related fatigue is far more than neutropenia or malnourishment from nausea.

    I'm just thinking this must have happened to someone else and there may be something to be learned that can help others. The cancer treatment caused my CFS, along with the other risk factors, Rich VanK's methylation block with all the methylation SNPs, infections, significant car accident and traumatic death of my sister.

    My dad was in the clinical trial for Retuximab for non-Hodgkin's lymphoma and it's a possibility for my mom's chronic lymphocytic leukemia, though it would likely kill her as she has advanced Parkinson's, too, so I am quite familiar with it.

    My dad had shingles in his head 18 months after his "successful" cancer treatment (suppressed immune system?) then a stroke 6 months later, reducing him to a state of early childhood. When he died, his body riddled with cancer, so the Retuximab prolonged his life, while ruining it.

    I told my oncologist of my concerns not to be like my dad up front, but got the garden variety carboplatin/paclitaxel/dexamethasone treatment anyway, which gave me CFS. Ive been under the care of a top naturopathic oncologist as well, who is familiar with CFS, and have gotten excellent treatment, backed by sound science.

    But I am sick anyway, which no one expected, but I likely had worse risk factors to start with.

    The research from Naviaux, Armstrong, Maes, etc. fits with my extensive labwork. I'm on one of the specialists you mentioned waitlist, which is 6 months long, and some of the others aren't seeing new patients.

    I've called the Seattle Cancer Care Alliance, the National Cancer Institute, and various cancer advocacy groups, and chronic fatigue and mitochondrial dysfunction resulting from treatment are not even on their radar. This area definitely needs more funding.

    I agree with the idea that CFS patients share the same symptoms, but had different triggers and definitely think the answers include some personalized combo of addressing immune system, mitochondria, and methylation problems in an integrative and iterative fashion to bring us back to wellness.

    The easy thing about cancer is that insurance will pay for the treatment. CFS is a no man's land, with no standard of care, they won't pay for nutrients, and it's far more complex than "Here, take this pill." I'm hoping I can find a way to get well before I go broke....and I know others have to be in this situation, without the understanding of why they are fatigued.

    Thank you for your kind thoughts.
     
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  14. Kati

    Kati Patient in training

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    Sending best wishes @Learner1. When I said former cancer patients are rare, I meant here on this forum. i have been on this forum for 7 years.

    I hope you find the right person to work with you.
     
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  15. Learner1

    Learner1 Professional Patient

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    Thanks, Kati.

    I've been poking around PR for 8 years, got some good clues in solving mental illness in a close family member... I've been struck also by the lack of cancer survivors here. I think it's perhaps that they get sucked up in the big cancer world and don't know to look here or value what's being said as I did. I don't think it's that they don't exist.

    PR came up again and again as I Googled my weird lab results. Most cancer survivors don't have knowledgeable functional medicine doctors treating them so wouldn't find this.

    I've been struck, though, as I researched my mitochondrial dysfunction, immune system suppression, chronic infections, and severe antioxidant and methylation nutrient depletion, exercise intolerance, orthostatic intolerance, crashing and need for sleep, how well the worlds of CFS and cancer fit together.

    And I've seen Robert Naviaux, Neil Nathan, Ben Lynch and others speak at conferences, and think Thomas Seyfried's Cancer as a Metabolic Disease is an excellent fit with what they are saying.

    It just strikes me that people like me could be a CFS subset and maybe some of the money earmarked for cancer research could go down this alley and help reduce cancer metastases as well as helping people out of CFS.

    Is there anyone thinking this, too?

    I appreciate your dialogue...
     
    Last edited: Dec 26, 2016
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  16. Learner1

    Learner1 Professional Patient

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    Interleukin 2 is for renal cell carcinoma and melanoma and is highly toxic.

    The immune system is very complex and there are several ILs involved. To me, it seems like a very tricky balancing act, with the promise of great cures as well as for unexpected and tragic outcomes, as they're finding out with other immune system acting drugs like Opdivo, which has caused multiple organ failure.

    It would be interesting to better understand how it would help CFS.
     
  17. Kati

    Kati Patient in training

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    Hi @Learner1 it reminds me of somone I talked to on Twitter, she suffered from all kinds of disabling symptoms, CFS like, following sepsis ( she was in ICU for a couple of weeks). She never recovered. She says there are a group of them suffering from post-sepsis syndrome.

    The second comment is that unfortunately, and I speak for my region, the physicians dealing with mito diseases strictly deal with genetic mito diseases and not acquired diseases. When I had a muscle biopsy several years ago, i was dropped when my Mito DNA was normal. There is simply nowhere to go, and we are no one's problem... unless one wants group therapy. :ill:
     
    Last edited: Dec 27, 2016
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  18. Crux

    Crux Senior Member

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    @Learner1 ;

    Abnormal iron deposition in various organs is one factor that seems to be common in a variety of diseases, including cancer.
    Iron overload is a major cause of fatigue, and many other detriments.

    Here's a general overview of iron and cancer. It doesn't include uterine cancer, but I've seen it included in other articles.

    http://link.springer.com/article/10.1007/s13238-014-0119-z
     
  19. Grigor

    Grigor Senior Member

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    Maybe you need to find out what you got as a treatment. I'm thinking Rituximab and Cyclophosphamide.
     
  20. Learner1

    Learner1 Professional Patient

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    Interesting. Thanks for passing this on. I've been stubbornly cancer free for over 2 years, so my main problem is CFS.

    However, I've had 4 iron issues over time:

    1) anemia resulting from chemotherapy. I had a couple iron IVs that fixed this.

    2) elevated serum ferritin (600+) for the past year, which my doctors attribute to my chronic infections. AST/ALT also rose when ferritin was highest. They're normal now and serum ferritin had been dropping as we've attacked infections.

    3) compound heterozygous for the 2 main HFE SNPs. We're aware of the possibility of hemochromatosis, but this doesn't seem to be the case.

    4) twice, a year apart, I've had wild iron numbers, but both times the pattern fit B6 deficiency anemia. I had to up my B6 dose to a ridiculous level, now taking 400mg P5P a day, which is resolving it. B6 is used to make hemoglobin and is used in detoxification, and I seem to be running through it very rapidly (along with B12, B2, folate, molybdenum, and B1).

    So, I wonder what causes the iron to go awry to cause the cancers in the article. There are an awful lot of variables... wondering how aberrant iron causes CFS beyond anemia or toxucity, and what causes it to go off track to begin with.
     

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