The ‘F’ Word

No, not that word. ‘F’ as in fatigue. I’m so tired of talking about fatigue, not to mention living with it, that I’m going to try to act like the journalist I used to be and write something useful about it.

Forty years ago on this date, I was fifteen, about as old as the girl in the above photo caught sleeping back then at Woodstock on this same weekend. I was too young to get my parents’ permission to go and still too obedient to concoct a story about staying over my girlfriend’s house so I could sneak off to it anyway. I did go to Watkin’s Glen four years later, but I had a car and had lived away from home by then and didn’t have to sneak. Oh, what I wouldn’t give right now for the energy I had then, the ability to exist on little or no sleep for a few days, then crash and sleep late on Sunday and wake up ready to take on the world again.

One year ago on this date, I had a partial mastectomy, which was referred to by its medical euphemism “lumpectomy.” I despise medical euphemisms, and if you’re interested, you can read a bit more about how much I despise them here. Today, one year later, I am suffering, along with thousands of other cancer survivors, from what is, thank goodness, not referred to by a euphemism but referred to by the straight-forward phrase “cancer related fatigue.”

Let me tell you a little bit about what kind of person I am. People who know me — even only in cyberspace, even for only a short period of time, like the time it takes to evaluate one of my new physical therapy patients — would never, ever accuse me of being lethargic, lackluster or apathetic. My mother used to say I was full of P and V, which stands for pep and vigor, or piss and vinegar, depending on how colloquial you want to be. So, you can imagine how frustrating it is for me, when I am used to boogy-ing full tilt through life, to be halted in my tracks by fatigue.

WebMD Offers this explanation of Cancer Related Fatigue:

  • Fatigue often is confused with tiredness. Tiredness happens to everyone – it is an expected feeling after certain activities or at the end of the day. Usually, you know why you are tired and a good night’s sleep solves the problem.
  • Fatigue is a daily lack of energy, an unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one month to six months or longer). Fatigue can prevent a person from functioning normally and impacts a person’s quality of life[....]Cancer-related fatigue is one of the most common side effects of cancer and its treatment. It is not predictable by tumor type, treatment or stage of illness. Usually, it comes on suddenly, does not result from activity or exertion, and is not relieved by rest or sleep. It often is described as “paralyzing.” It may continue [long] after treatment is complete.

I actually recall the exact day that my own cancer-related fatigue started. It was the second Tuesday of radiation treatment, in week two of my three-week, once-a-day Vancouver protocol, which would last for a total of sixteen treatments, or “fractions” as they are known. I was on medical leave, because I was only about a month post-surgery by then, and I was not allowed to be lifting patients yet. Plus, I may be feisty, but I’m a realist. I would have been far too distracted to drive from patient to patient all day to do my job properly while still getting treatment, so I had elected to stay out of work until radiation was done. Good thing I did. On that second Tuesday, about halfway through radiation, I left treatment as usual, feeling pretty good, a little tired from getting up early, but nothing that a quick stop at the Dunkin’ Donuts down the street couldn’t fix. By the time I pulled my car into my driveway forty-five minutes later, I felt like lead. I nearly collapsed as I got out of the car, just managed to keep myself from crawling to the door, and flopped into bed, where I fell instantly asleep for the next four or five hours. By the end of that week, I had developed a raging sinus infection and had to see my primary care doctor to be put on a fierce antibiotic. After that week, I was never the same.

In survey results published in 1997 by the Fatigue Coalition out of the University of Chicago,

  • “oncologists perceived that 76% of their patients experienced fatigue.” However, these same “oncologists believed that pain adversely affected their patients to a greater degree than fatigue (61% v 37%), [while] patients felt that fatigue adversely affected their daily lives more than pain (61% v 19%). Most oncologists (80%) believed fatigue [was] overlooked or undertreated, and most patients (74%) considered fatigue a symptom to be endured. Fifty percent of patients did not discuss treatment options with their oncologists, and only 27% reported that their oncologists recommended any treatment for fatigue.”

Not a big surprise to me, these study results. My radiation oncologist is the head of his department at a well-known teaching hospital, and yet, when I reported my exhaustion to him on Wednesday of that week, I was brushed off with an “Oh, well, you might need an extra hour of sleep for a while, but you’ll be fine.” By the end of the week, when I complained about my obvious and severe upper respiratory symptoms, I was sent home from this well-known teaching hospital, which is full of doctors, nurses and medication, and told I had to contact my primary care doctor to get treated for it. Does anyone else think there’s something wrong with this?

A study published in the 2/15/2006 issue of the journal Cancer found that “[u]p to one third of women treated for breast cancer report fatigue symptoms up to 10 years after diagnosis….” The authors of the study concluded that, “[o]verall, the present findings highlight the resilience of breast cancer survivors” in putting up with fatigue for so long and living their lives despite its continuance. For me, what this study highlights is that perhaps most of the physicians who treat cancer patients, who prescribe the poisons and perform the procedures that overwhelm our immune systems, who oversee the scorched-earth, slash-and-burn treatment protocols that nearly all cancer patients must endure, are themselves doing a piss-poor job of assessing the effects of these protocols on their patients. They might as well just say out loud, ”Oh, you’re still alive after all that? Great. My work is done. See ya.”

Well, I may be exhausted, but I’m not stupid. And as a health care clinician myself, I am not about to accept this nonsense. As the members of the Fatigue Coalition concluded after their survey, “When used, treatments for fatigue were generally perceived by patients and caregivers to be successful. Our data confirm the high prevalence and adverse impact of cancer-related fatigue, although it is seldom discussed and infrequently treated. For patients and oncologists, improving the quality of life of cancer patients requires a heightened awareness of fatigue, a better understanding of its impact, and improved communication and familiarity with interventions that can reduce its debilitating effects.” Right on, baby. Not for nothing did I grow up in the sixties. Power to the People, I say, and Knowledge is Power.

In May of 2006, Alicia Collado-Hidalgo et al published research findings that uncovered a profound functional alteration in the immune systems of women who suffered from fatigue more than two years after successful completion of breast cancer treatment. They looked at the normal cellular processes that are recruited and initiated by our immune systems to help us fight both the cancer cells directly and the indirect effects of the treatment we endure to blast the cancer out of our bodies, and found that some of those processes may never get shut off after treatment is done. Long afterwards, our bodies may still produce the same inflammatory response they produced when we were first diagnosed, a cellular response which can be detected and measured in blood samples years after our cancer is ‘gone.’ And this continuing inflammatory response was found in those women who suffered from fatigue two years or more after they’d been treated.

So, what the heck do we do about it? What I’m doing, first of all, is arming myself with information. I’ve taken to getting copies of every report for every test and diagnostic image I get, because I’m frankly sick of having reports misread to me or not reported to me at all. I had my regular annual physical with my PCP recently, whose sensible response to our discussion of cancer related fatigue was to order a bunch of lab tests. This yielded some interesting information, namely that both my white and red blood cell counts were just below the low end of normal. Meanwhile, my monocytes, which are the white blood cells that destroy and remove cancer cells from the body, are running above the high end of normal, months after my treatment for cancer has ceased. These monocytes were implicated, along with their associated cytokines, in the above study of immune system changes in women with fatigue. Things that make you go, “hmmm.” In case you’re interested,

  • Cytokines are natural cell products or proteins, such as the interferons and interleukins, that are normally released by white blood cells, lymphocytes and macrophages [like monocytes] in response to infection. These cytokines carry messages that regulate other elements of the immune and neuroendocrine systems to control cancer growth. In high amounts, these cytokines can be toxic and lead to persistent fatigue.
  • from the Cancer Supportive Care Programs site

I have also looked up a number of fatigue assessment tools that have been researched for efficacy, and decided to fill out the Fatigue Symptom Inventory, which you can find in my previous post. I have an appointment with my breast surgeon in two weeks, days after my one-year post-op mammogram, and I am planning to bring a copy of my filled-out FSI. One of my cancer doctors really ought to step up to the plate, in my opinion, act like they earned those letters after their names, and conduct a decent medical evaluation, don’t you think? The Cancer Supportive Care site has this to say on the subject:

  • What Physicians Need to Know

    Managing fatigue begins with talking to your doctor. Physicians frequently don’t ask about fatigue. Patients often have the misconception that fatigue is just something that they must endure and they don’t ask for a treatment plan to help with the fatigue. Recent awareness about the negative effects of fatigue on quality of life has led to new efforts and programs to help relieve symptoms of fatigue.

    Medical Evaluation [Should Include]
    1. A careful history to define the extent of fatigue.
    2. A physical examination to look for abnormal physical or neurological findings.
    3. Blood tests to assess hemoglobin levels and chemistries such as potassium, sodium and magnesium.
    4. Check for metabolic abnormalities; measure thyroid and adrenal functions and serum chemistry profiles including albumen, liver and renal functions and calcium.

This article also goes on to suggest lots of reasonable and practical measures to take to mitigate fatigue, such as good nutrition, emotional support, getting rest and moderate exercise, and taking anti-depressants if necessary. These are all suggestions that most of us know as common sense or discover as we communicate with other survivors. But what about when you do all that and still have fatigue? My daily diet reads like a textbook of good nutrition. It’s been so good for the past four or five months, that I’ve managed to lose about ten pounds even though I’m too tired on my days off to get out of bed sometimes. I’ve been taking an excellent supplement for about three weeks which contains the nutrients that our bone marrow needs to produce red and white blood cells (iron, vitamins C and B12, and folic acid), and I have begun to feel marginally better. I work as a physical therapist, so I spend about thirty hours a week running around from patient home to patient home, demonstrating exercises, busting muscle knots with massage, and teaching my patients how to walk better. So, the next doctor who glibly tells me that I wouldn’t be so tired if I got more exercise will possibly get a bust in the chops. I’m already taking an anti-depressant, which is doing a good job. I don’t feel at all depressed, sad, desperate, hopeless or anything like that. I feel frustrated and annoyed and determined to get someone to help me with my fatigue. So, what else can I do?

Well, hopefully, I can get a doctor to check what hasn’t yet been checked in the above list and make sure I don’t have some other medical problem. The National Cancer Institute suggests that, owing to the apparent relationship between fatigue and inflammatory cytokines, taking anti-inflammatories for a time might help. And should all else fail, small dosages of stimulant medications, like caffeine, methylphenidate (Ritalin), modafinil (Provigil), and dextroamphetamine (Dexadrine) have been shown to help people get past fatigue. I have a friend who developed crippling fatigue as a side effect of a medication she needed to take to treat another condition effectively (gee, sound familiar??), and she was successfully treated with Provigil. But she had to insist on having the fatigue treated in the first place, making sure to mention that she was having difficulty getting up to go to work.

So that’s my plan on this anniversary, to insist that I have a right to have my life back. Peace, baby.

Further Information – In addition to the links included in the post, here are some PDF’s you can download:
Alternative Cancer Treatment-Immunity Management
Assessment of fatigue
Cancer Fatigue Awareness
Fatigue Symptom Inventory

And here is a link to one of the most comprehensive write-ups on cancer related fatigue; you can read both the patient version or click on the tab for the health professional version:
National Cancer Institute – Fatigue PDQ


Please click on the post title or the comment link below to post a response.

pixelstats trackingpixel
Share
This entry was written by Kathi, posted on Friday, August 14, 2009 at 11:08 pm, filed under Chemotherapy-IV & Oral, Cognitive Dysfunction & Depression, Fatigue, Health & Healthcare, Making A Difference, Nitty Gritty, Radiation, Research, Survivorship and tagged , , , , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

14 Responses to “The ‘F’ Word”

  1. That is a lot of information. You have really been doing your research. I am sure this is very helpful to others. I know I need to find out the cause of my fatigue. I am so tired of being tired.

  2. Sitting here with tears rolling down my face. Thank you…thank you…thank you. I have a doctors appointment this Thursday for chronic fatigue that they simply want to put off as “oh…you just need more hours of sleep”…”you need more exercise”…etc etc. I am printing this to take with me. Maybe they will listen.
    With hugs,
    V

  3. Vickie, you are so welcome! Let me know what happens. Kathi

  4. Thanks for the info Kathi, I had a second diagnosis of cancer after 6 years in the other breast and even though this was a better prognosis, non-invasive high grade I had a lumpectomy in Sept/09 followed by 4 weeks radiation treatment which ended Oct.21/09. I had invasive cancer 6 years ago, no positive nodes, no chemo but again lumpectomy and radiation. I found this time that the fatigue from the radiation hit me much quicker and harder and wondered if it was because it wasn't the first time. I have been off work since the end of September and have just attempted a "graduated work return program" which has left me feeling more fatigued, and more depressed because I feel I've failed the attempt and today have had to let them know that I need to back off work.Now I'm looking for some solution to the awful tiredness that makes me feel like I'm constantly at the stage of coming down with some illness. Thank you for your information. I have been looking for some feedback from somewhere to see if its just me or if there is a real explanation for what I am experiencing. I will be approaching my gp in a week and you have given me some very helpful suggestions to discuss with him. I was on tamoxifen for 5 years and started Femara a few months before the second breast cancer was discovered but due to joint pain in hands, knees etc. my onc. has changed my prescription to Arimidex which I just started taking a week ago. So there could be a lot of contributing factors to whats going on. Long and short Kathi, thanks so much for helping me to feel like I'm not some weak and crazy person who just wants to moan about how tired I am.

  5. Keep checking back, too, Michele. You can click on the 'fatigue' tag in my tag cloud on the sidebar. It's an ongoing battle, I'll tell you. Right now, I'm doing 300 mg wellbutrin a day & taking a supplement called "Gentle Iron" which you can get anywhere. I'll go fish out a link & post it or email it to you.

  6. kathi & Friends…
    Oh… so that’s what this is… finally, a name for this deep, exhausting, heavy, deprived, aching, traveling pain… I was told it’s fibromyalgia and osteoarthritis… but whatever it is, it’s deeper, and affects the entire mind, body and spirit… Chronic Cancer-Related Fatigue…
    Thank you for giving my life a sense of hope and well-being… yikes, I am not the only one!
    Dang doctors… why didn’t any of them ever do blood tests, or discuss the possibility of anemia, hormones, and thyroid affected by the cancer, the surgery, the chemotherapy, the radiation…
    perhaps there are no treatments to correct the dastardly effects of treatment for cancer…
    An eye-opener!

  7. This is an amazing & thorough post, Kathi. The most comprehensive explanation of the F word I have read to date. Thank you for sharing!

  8. Thank you so much for taking the time and energy (especially the energy!) to research and write this post. I am too tired (read Fatigued) to organize my thoughts to share my C-word-F-Word experience (had BC 3 times) right now, but your piece is so thought provoking that it’s making me want to. I absolutely relate to your frustration …. am the same type of high-energy, active, etc. person and refuse to believe I will never get back to feeling that way consistently.

    I’m curious (just discovered your blog via @Chemobabe): how do you feel these days?

  9. Thanks so much for writing, and love your name “It’s the bunk.” It sure is!!!! You might also find another more recent post on the same subject helpful and interesting: Losing It & Trying To Get It Back, which I just reposted.

    I am much better than I was a year ago, or two years ago. Thanks for asking. Now, I finally feel like I might have the energy to retrieve some of the swaths of my life that have been largely on hold since this bullshit began. We’ll see. That’s a whole nuther project in itself. My house is a wreck, I haven’t paid a whole lot of attention to my art (you can see some of what I used to do at KKsPhotos.com), and I still can’t work full-time, nor do I imagine I’ll be able to for the foreseeable future. But I can get through the day now without having to take stimulants, and my concentration is better.

    How are you doing?? Bloody hell, BC 3 times??? I call breast cancer The Stalker. Hugs to you.

  10. Hi Kathi! I just found my way to the Losing It post, then found my way back here only to see your almost instant response! Thank you! So great to “meet” you! Glad to know your energy has improved, and I hope it will continue to do so even more.

    Thank you for asking how I’m doing. I am recovering from BC#3 (I like how in one of your posts you called it your “cancer adventure” — exactly what I often say too.) That adventure began in May 2009, and since then have had chemo, 3 surgeries and plenty more that I can’t think of right now! My fatigue this time around has evolved into an on and off thing. As in, have energy (physical and mental), do a bunch of stuff, brain firing at about 80-85% of “normal” capacity; then KRASH (yes, with a K!) for amount of time greater than amount when had energy and turn into zombie w/mind and body literally in pain. It’s been so hard to have to accept that your will and determination can only take you so far, no matter how strong-willed you are. However, I have noticed that in the past 6 weeks (last surgery was Nov 2010; 6 hr-procedure), I can sustain the energy for longer periods before the Krash With a K, which gives me hope.

    Hugs to you too! Are you on twitter?

    ps: You’re inspiring me to put some thoughts down, and will do more when the brain decides it will cooperate and make my fingers do the typing!

  11. Wow, Kathi! That was fantastic. Thank you so much for all the research. I know this will help a lot of people. I pray that your meeting with your doc and your results go well.

  12. Yes, Beckye, there’s a Twitter link on the sidebar. Just scroll down a little & you’ll see it. My posts get automatically posted there!

    Even though I’m finally seeing some light at the end of the tunnel, I get knackered a lot more when I catch a cold or something. Just published a post about my current respiratory adventure…!

  13. Brilliant…..feeling so much better….thought I just couldnt pull myself together …be grateful that I have the all clear….I believed that when the treatment was all finished..in my case had my last treatment in Feb after being diagnosed with BC, level 3…chemo,mascectomy,radiotherapy,anitbodies….I would be back to “normal”…….thankyou for helping me to accept its all different now & just listen to yr body & not feel pressured…its ok to take the time to let yr body repair itself in its own time……glad I found yr blog…thanks again.

  14. Bridget, I’m glad this was helpful. I felt like I really got hung to dry when I started having fatigue. That was almost worse than having the fatigue!! Here are a few more links to other posts I’ve written on fatigue. The first link has some practical info for your doctor on treating it, coding for it to get paid to treat it, etc. Fatigue: Lessons for Your Doctor

    This second link is about some research on fatigue, and at the end of it are links to most of my previous posts on fatigue:
    Could Have Told You That

    Hang in there. Mine has gotten better — slowly!

Leave a Reply