"Chemo brain" Sound familiar?

Discussion in 'Fibromyalgia Main Forum' started by Spinetti, Aug 12, 2009.

  1. Spinetti

    Spinetti New Member

    From the New York Times:

    August 4, 2009
    PERSONAL HEALTH; The Fog That Follows Chemotherapy

    As more people with cancer survive and try to return to their former lives, a side effect of chemotherapy is getting more and more attention. Its name is apt, if unappealing: chemo brain.

    Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment.

    The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities.

    In those affected -- and doctors at this point have no way of predicting who might be -- it is as if the cognitive portion of the brain were barely functioning. Symptoms are most apparent to high-functioning individuals used to juggling the demands of complex jobs or demanding home lives, or both.

    The chemo brain phenomenon was described two years ago in The New York Times by Jane Gross, who noted that after years of medical denial, ''there is now widespread acknowledgment that patients with cognitive symptoms are not imagining things.''

    Some therapists have attributed the symptoms of chemo brain to anxiety, depression, stress, fatigue and fear rather than direct effects of chemotherapy on the brain and hormone balance. Yet when such factors dissipate, the symptoms may not. Recent studies that took other influences into account and analyzed how patients' brains worked before and after cancer treatment have shown that cognitive effects of chemotherapy are real and, for some, long-lasting.

    There are now two new books on the subject: ''Chemobrain'' (Prometheus Books), by Ellen Clegg, an editor at The Boston Globe, and ''Your Brain After Chemo'' (Da Capo Press), by Dr. Daniel H. Silverman, a leading researcher in the field, and Idelle Davidson, a health journalist and former breast cancer patient. Dr. Silverman heads the neuronuclear imaging section at the University of California, Los Angeles, Medical Center.

    Ms. Clegg's book, the more technical of the two, delves into details of research and may confuse readers about the validity of her subtitle, ''How Cancer Therapies Can Affect Your Mind.'' The more user-friendly book by Dr. Silverman and Ms. Davidson, subtitled ''A Practical Guide to Lifting the Fog and Getting Back Your Focus,'' acknowledges the controversy but cites both anecdotal and research reports showing that the problem exists independent of other factors that can beset cancer patients.

    One Woman's Symptoms

    Barbara D. Wick, an insurance consultant in the Chicago suburbs who has been in and out of treatment for ovarian cancer for six years, says her cognitive problems have subsided somewhat since her last round of chemotherapy ended six months ago. Among the symptoms she experienced were these:

    Inability to focus on anything with any complexity or depth.

    Inability to retain information, especially names.

    Difficulty retrieving words and substituting wrong words (''chicken'' for ''kitchen'').

    Difficulty analyzing anything other than simple questions.

    Inability to follow instructions when cooking or knitting, for example.

    In their book, Dr. Silverman and Ms. Davidson quote a photographer treated for breast cancer at age 34, who said: ''Task completion is where I'm most affected cognitively. It's as if the follow-through feature has been removed from my brain.''

    Another patient, Patrick, a diagnostic radiologist treated for non-Hodgkin's lymphoma at age 58, had to quit his job when he realized he was making mistakes. ''I would lose my place and have to go back and start over with an exam,'' he said. ''I tried to explain a procedure to a patient and I got very confused.''

    At the supermarket, Patrick and his wife put groceries in the car, then he drove off without her. He forgot pots on the stove until the smoke detector went off. Upset by the loss of his former self, he contemplated suicide. After psychiatric treatment, the depression lifted, but the confusion did not.

    Searching for the Causes

    It is not yet clear what happens during cancer treatment to cause symptoms of chemo brain. Some experts think some anticancer drugs could have direct toxic effects on neurons, although most drugs do not penetrate the blood-brain barrier. Some evidence from animal and human studies suggests that cancer treatment can cause biochemical or anatomical changes in the brain, or both.

    Dr. Silverman reports that metabolic imaging studies have shown that ''people exposed to chemotherapy have impaired brain function in certain regions compared to others who have not been exposed.''

    Tim Ahles, director of neurocognitive research at Memorial Sloan-Kettering Cancer Center in New York, is looking into a possible relationship between chemotherapy-induced cognitive changes and DNA damage in breast cancer survivors.

    Several symptoms of chemo brain resemble effects of estrogen loss after menopause caused by surgery. Since treatments for breast and ovarian cancers can suppress the production or action of estrogen, loss of estrogen may account in part for chemo brain in women.

    Among women past menopause treated with an aromatase inhibitor that prevents the body from making estrogen or with tamoxifen, which blocks the action of estrogen on breast cancer cells, those on the aromatase inhibitor, which results in much lower levels of estrogen, ''had significantly poorer performance on learning and memory measures,'' Pauline M. Maki of the University of Illinois in Chicago reported.

    Hormonal changes can also occur in men undergoing cancer therapy. In a study of men with prostate cancer treated with drugs that depleted androgens, treatment with an estrogen improved their performance on memory tests.

    Controlling for brain function before cancer treatment begins can help determine cause and effect. In one study, cancer patients took a battery of neuropsychological tests before starting chemotherapy, three weeks after completing treatment, and again one year later. Although a third of the patients had signs of cognitive impairment before therapy began, the number jumped to 61 percent after treatment, and half remained impaired a year later.

    This is the first of two columns on cognitive problems from chemotherapy. Next week: coping with the effects of chemo brain.
  2. mbofov

    mbofov Active Member

    What I found most interesting was this line: The chemo brain phenomenon was described two years ago in The New York Times by Jane Gross, who noted that after years of medical denial, ''there is now widespread acknowledgment that patients with cognitive symptoms are not imagining things.''

    "after YEARS of medical denial" ---- THAT sounds very familiar. Why did doctors deny their patients' reality for years? I know, it's what we all go through here.

    There was a survey (a reputable one) done a year or two ago about how doctors respond when patients complain of side effects of meds. A majority of doctors (I forget the exact number but it was over 50%) dismissed the patients' complaints.

    And people wonder why there is so much hostility to the medical profession in general --

  3. jasminetee

    jasminetee Member

    This is fascinating. Thanks for posting it.

    I'm so glad your doctor apologized profusely. It's nice to hear that.

  4. Spinetti

    Spinetti New Member

    Here's the follow-up article with tips for coping with cognitive impairment. If I could just remember them!

    Thanks for the thoughtful responses!

    August 11, 2009
    Taking Steps to Cope With Chemo Brain

    Cancer can be a life-changing experience, both physically and mentally. And when cancer treatment delivers a knockout punch to cognitive abilities, patients with the resulting “chemo brain” often face major challenges trying to get their lives back on track.

    But those who recognize the cognitive effects of toxic cancer drugs, adjust their schedules and learn to compensate for what are usually temporary limitations have an easier time returning to a productive life.

    Barbara D. Wick of Chicago, for example, was working part time as an insurance consultant and serving on several not-for-profit boards while receiving chemotherapy for ovarian cancer. It was suddenly a challenge for her to deal with the complex problems presented by her professional and volunteer activities.

    “I found it difficult to deal with more than one factor at a time and scary to have to think on my feet,” she said. “And I couldn’t trust my memory.”

    She continued working but stopped taking new clients and transferred a difficult account to someone else. Helped by a support group, Mrs. Wick adopted new ways to handle professional and personal demands.

    “I learned coping techniques that are not really different from those that would be used for people with memory loss,” she said in an interview. “I write everything down immediately, including appointments, doctors’ comments, ideas of things to do, plans and promises I’ve made. This gives me something to go back to, and using more than one modality — listening and writing — reinforces my ability to remember the information.”

    She said she also became a “list addict.”“At night, I make a list of what I have to do and where I have to be the next day,” she said. “I’ve become religious about always putting things back in the same place — keys, cellphone, scissors, bills, everything. I pay bills on the same date and I double-check and proof everything, sometimes twice.”

    Strategies for Staying on Track

    The symptoms of chemo brain — commonly mental fogginess that can cause problems with memory, concentration, word retrieval, number processing, following instructions and multitasking — are widely known. And the effects, the causes of which are still unclear, are sometimes long-lasting.

    In an excellent new book, “Your Brain After Chemo,” Dr. Daniel H. Silverman and Idelle Davidson quote a 52-year-old woman who was treated four years ago with drugs and radiation for breast cancer:

    “Ever since I got lost in the shopping mall garage and couldn’t find my car, I always write down the level number and color code, etc., on the back of my parking ticket,” she told the authors. “And I always place parking tickets in the same section of my purse so I know where to find them. For extra measure, I’ll play a word game. If I’m parked on B1, for example, I’ll make up a cue like: Be one with the universe.”

    Dr. Silverman, a leading researcher in the field, and Ms. Davidson, a health journalist and former cancer patient, offer a long list of suggestions to help people who are struggling with the cognitive effects of chemotherapy. Even though I don’t have chemo brain, several of their tips already help me keep track of a complex life despite an aging memory. And while I’m not yet ready to buy a personal digital assistant, I plan to adopt several other strategies.

    Prioritize. Because multitasking can be overwhelming to people with chemo brain, it helps to list tasks in order of their priority and concentrate on one at a time.

    Develop routines. Prepare the night before for the next day. Review your calendar, lay out clothes, pack your briefcase, perhaps even set up breakfast and prepare a brown-bag lunch. Take medications and exercise at the same time each day.

    Rehearse. On the way to a meeting where you will have to be on top of your game, visualize the room or the people who will be there and practice what you will say.

    Use word associations or rhymes. Maybe Harry has lots of hair and Mrs. Gold lots of money. Perhaps your daughter-in-law’s birth date is 2-4-68 or the combination on your gym lock is 2 (times) 6 (equals) 12.

    Rely on more than one sense. Try to link people and places with their scents, tastes, textures or unusual characteristics. Maybe Henry always wears a hat, or Rose’s front door is red.

    Use a notebook to record information. My surroundings are covered with sticky notes, and I search frantically for something I know I wrote down somewhere. The authors suggest a single notebook so that everything is in one place, and dating the pages as you use them. They say, “This frees your desk and your mind from clutter.”

    Post a checklist by the front door. Leave yourself a note of things to remember when you are going out — keys, wallet, walk the dog, close the windows, turn off the hose, check the faucets, lock the door.

    Write phone numbers on your phones. It doesn’t take chemo brain to forget a phone number, and I’ve noticed that many people don’t know their own cellphone number. Program as many contacts as you can into your cellphone, and keep a list of frequently dialed numbers next to your landline.

    Use a day planner. Write down all appointments immediately, with times, places and contact phone numbers. If you spend most of the day at a computer, you can use the calendar feature that alerts you to appointments. As a backup, I record things on a wall calendar and keep a paper tickle file, but this works well only if you check it regularly.

    Leave messages for yourself. If you have voice mail or an answering machine, you can use it to remind yourself of appointments or tasks you have to do. But again, this works only if you check it regularly.

    Timers can be lifesavers. I never put anything on the stove, in the oven or on the grill without setting a timer to warn me when to turn the heat down or off. I also have several 24-hour timers that I use as a wake-up alarm and to remind me when to move the car, pick up the grandchildren at school or put the laundry in the dryer.

    Get adequate rest. Even without chemo brain, fatigue is a memory destroyer. Don’t skimp on sleep, and when you feel your brain dragging, take a 20-minute nap. Stress impairs brain function, so practicing relaxation techniques like meditation and yoga can be very helpful as well.

    Let Others Help

    Finally, don’t bite off more than you can chew. Until and unless your brain recovers fully, simplify your life. Follow Mrs. Wick’s example if you can and reduce your workload or your hours. Perhaps even take a vacation or a leave of absence. Less work done well is better than a lot done poorly.

    If those options seem like luxuries you cannot afford because you need to work, this is the time to rely on friends and family. Delegate chores. Say yes to people who offer to cook meals. Tell family members, especially, what coping tips you’re using so they don’t inadvertently derail your efforts. In as many ways as possible, give yourself a break.

  5. victoria

    victoria New Member

    this is interesting as I just read that some cancers are becoming RESISTANT to chemotherapy.

    It appears to be known that some cancers are caused by &/or associated with bacterias, 2 are h. pylori (known mostly for causing ulcers) and some type(s) of mycoplasma.

    So, it would seem to me that there must be one or more of these that are causing the tumor and causing the resistance in the cancers becoming resistant to chemo...?

    And if chemo is killing a high number of the bugs associated with or causing the tumor/s... maybe the die-off is creating a lot of toxins, thus causing the brain cloudiness???? It doesn't appear many have been proven beyond a doubt, but it makes me wonder.

    Obviously Chemo is going to all by itself cause probably 99% of any one's problems, but wonder if some of the detox methods afterwards would be of help.

    [This Message was Edited on 08/13/2009]

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