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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.
     
  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.
     
  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 Senior Member

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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 Senior Member

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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 Senior Member

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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.
     

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