Cancer Fatigue

(Fatigue, Not Pain, Is the Biggest Complaint)

Immediately following these personal observations by women suffering from "Cancer Fatigue" is an in-depth article by Judy Foreman of the Boston Globe:

Katheleen writes: 3/01

I am 61 yrs. old, and was very active until around l998 right after I completed l8 mos. of chemo. I used to ice skate, walk 3 miles at a time, work nonstop.  I do walk and with much pain at first throughout my whole body. I cannot hold my head up very easily anymore, and as the day wears on and I get more tired, my head sags and I look and feel like a woman of 80 yrs. Though over 60, I have had the body and stamina of a woman 10 yrs. my junior  .As you can guess, this is a new twist that I am adjusting to, i.e., old age at 60.   My doctor, the oncologist, says I should be tired, I am aging. What a creep. The orthopedist he sent me to, said the same thing, and wanted to do surgery. My gastrointerologist, said not to listen to either one of them, just take calcium and the bones will strengthen.

I had chemo from May of 96 thru Dec. of 97, and I had CHOP plus 2 more chemicals afterwards. One
of the last 2 is what caused the cataracts; so far no glaucoma. 

Dear Diana,
Thanks for your email 3/2. Yes, feel free to include my info in your newsletter; it may help others.

You're right, we have to let go of the anger our biological minds generate toward the oncologists of the world, so to say, as it only eats our insides out, doesn't it?

Re: walking, I walk alone or with our dog, sometimes I walk at the Galleria Mall with my husband on Sunday mornings, and I can do 3 miles.

I try to lift weights daily for about 3 minutes as I read recently in Walking magazine this helps women's upper body bones, the ones we tend to break easily due to osteoporosis. I don't have the latter as I am on a soybean diet, use progesterone cream daily, exercise, but with my difficulty standing at times, I could easily fall and break a bone. 

I suffered from Nonhodgins Lymphoma from l994 thru l996. I guess denial works in all of us at one time or another including me as I had it almost 3 yrs. and was at stage 3. I had been to 6 doctors trying to find out what the problem was with my lower back and hip pain and my swollen left leg, but they misdiagnosed me as having sciatica. The oncologist laughed at me when I came in for letting myself get to such a state, and he forgot about the 6 docs. I consulted. I forgive him, and place his bad attitude in the Lord's care.

From what I have read, being foisty and having a good sense of humor help people overcome cancer. I came across a good book in l996 at The Whole Foods Market "Macrobiotics and Cancer" by M. Kushi, owner of the world renowed Kushi Institute in Boston.  It took me a year to get on it completely, This diet gets you off dairy, red meat, caffine, liquor, coffee. When I had the lymphoma I was eating lots of eggs, dairy like cheese and yogurt, and drinking about 1 gal of skimmed milk a week. I  eat chicken and fish, but mostly grains.

I will follow your friend's advice:  Norma writes:  "Sharon and Lloyd Multhauf created a webpage for the BC List.  It has a menu that allows you to join the list, search the archives and tells a bit about the list.  The instructions to join the list are very, very simple.  Have Kathleen go to http://bclist.org/ and take a look.  She should have no problems, but if she does, let me know."

Mary Margaret is going through chemo:   "Speaking of fatigue, I am fighting now to stay up until 8:00 every night.   I am sleeping 8 to 9 hours when I used to get by on 5 to 5 1/2.  In addition I often lay down for a nap in the afternoon.  It's now 7:50.  Time to take my meds and get to bed."

Diana:     "It's been over two years, but I remember the extreme fatigue because of chemo.  I had MFC.   Your chemo is different, yet you also are fighting fatigue.  Is this the reaction no matter what kind of chemo we have?  People insist this fatigue is due to our aging rather than to chemo reaction.  Hogwash!  I, too, slept 6 hours a night before chemo and had roaring energy."

Janice:    "I can't believe there are those that say exhaustion is from 'old age' rather than chemo!  I remember being so tired, especially the week right after radiation.  Usually the third day after treatment was a couch-bed-couch-bed-bathtub-bed sort of day.  Allowing myself to rest when I needed to, letting go of the 'Superwoman' thought process that 'I shouldn't rest' was really helpful.  I would encourage a cozy comforter, cup of tea, warm bath, favorite soothing tapes and a spritz of lavender on the sheets, then lay down and enjoy.   I would pray, think and doze in those hours, and give myself permission to rest.   A little dust in the house is fine.  Let go of the concepts we have of ourselves and allow yourself to heal.  My 45th birthday is today.  I started to dance again.  My dog was resting on the couch and thought mom had lost her mind.   I think I actually regained it!"  Janice adds, "I remember that the chemo was accompanied by steroids (FAC) which gave me insomnia for two days.  The stress, too, and changes in eating, differences in metabolism, and even anemia, which is created by the chemo, can add to the tiredness."

Lisa:          "Chemo, recovering from surgery, radiation, antinausea drugs and the stress of the cancer diagnosis all cause fatigue.   The fatigue IS real.  Don't fight it - it's a good excuse to take naps!   There isn't anything wrong with slowing down a bit if your body needs extra sleep.   The energy WILL return.  I found that taking a leisurely walk each day helped me.  I cannot imagine having the strength to belly dance while going through chemo, though I did swim laps a few times a week.  People really stared at me with my bald head - perhaps they thought I was really serious about swimming!"

Judy Foreman of the Boston Globe, July 12, 1999
foreman@globe.com

"Although Dr. Candace Jennings of Ipswich completed breast cancer treatment a year ago, she has only half the energy she used to have.  By this time Dr. Candace Jennings, 50, an orthopedic surgeon from Ipswich, figured she'd be back to work and blessed again with plenty of energy for her husband and sons, 7 and 13.  But even though it's been a year since she finished chemotherapy and radiation for breast cancer, she's only got half the energy she used to have. She tried to go back to work but had to give it up - "the energy demand was too much," she says. And her doctors, while sympathetic, haven't offered much hope. "Somebody's got to solve cancer fatigue," she says passionately. "It really affects your self-esteem," especially if you're used to being productive.  "When you can barely get out of bed to go to the bathroom, it's very hurtful."

In recent years, cancer specialists have made huge strides in combating the nausea, vomiting, and pain that often accompany cancer and its therapy, but treatment for the fatigue that can last long
after treatment lags far behind. In fact, it's a huge, under-recognized, problem for many of the 8 million Americans who've had cancer.

Two years ago, an organization called the Fatigue Coalition - a group of doctors, nurses, and advocates funded by Ortho Biotech to study cancer fatigue - surveyed 419 patients and found that fatigue, not pain, was the most common complaint, although half had completed treatment more than a year earlier.

In May, the group presented its latest data at a cancer conference in Atlanta. Again, fatigue was the big complaint, even two years after treatment; 76 percent of the 379 patients queried had debilitating fatigue at least once a week.

That's "absolutely staggering," says Dr. Russell Portenoy, head of pain medicine and palliative care at Beth Israel Medical Center in New York and chairman of the coalition.  It's "inexcusable," he adds, that so many cancer patients think they must simply accept feeling wiped out, and that doctors don't take their complaints more seriously.

But this is beginning to change. The M.D. Anderson Cancer Center in Houston recently opened a special facility to treat cancer fatigue.  Memorial Sloan-Kettering Cancer Center in New York is planning one, too, and so is New York's Beth Israel.

And though the research is preliminary, there are signs that better treatments will become available as scientists begin to untangle the many causes of cancer-related fatigue.  In some cancer patients, perhaps 15 percent, depression and anxiety are likely causes of fatigue, says Dr. William Breitbart, a psychiatrist and internist at Sloan-Kettering. But for many more, it's the other way around - they get depressed because of their lack of physical energy.

Sometimes, fatigue is caused by the cancer itself as tumors compete with healthy tissue for nutrients. In other cases, it's the treatments that cause fatigue - chemotherapy and radiation, or even relatively nontoxic immune-boosting drugs.  In fact, the fatigue caused by immune-modifying drugs like the interferons, the interleukins, and tumor necrosis factor is so common and so profound that researchers suspect the natural forms of these substances, called cytokines, which are made as the body tries to fight cancer, are also triggers of fatigue.

In one small study, Dr. Donna Greenberg, a Massachusetts General Hospital psychiatrist, found that a cytokine called IL-1 rose in prostate cancer patients several weeks after radiation, just as
fatigue increased, though she cautions that the connection between the two events is still unclear.

Other studies on cytokines and fatigue have had ambiguous results, says Barbara Piper, an associate professor of nursing at the University of Nebraska Medical Center who works with the Oncology
Nursing Society to study cancer fatigue. Despite the embryonic understanding of the physiology of fatigue, researchers are finding ways to fight it.

At Sloan-Kettering, Breitbart has just completed a study showing that the psychostimulant drugs, Ritalin and Cylert, when used alone, improved fatigue significantly over a placebo in people with AIDS, which like cancer, can cause exhaustion.

Fatigue has also been linked to low white blood cell counts, which occur when chemotherapy damages the bone marrow. There are drugs that stimulate white-cell growth, but they are usually used to protect against infection, not to boost energy.

The bottom line, says Dr. Wendy S. Harpham, a doctor in Dallas who, like Candace Jennings, had to give up her practice when cancer struck, is that fatigue is one of the toughest adaptations that many patients have to make.  In some ways, she says, "the adjustment to my energy limitations has
been harder than managing many of the other challenges of survivorship."   Jennings echoes that. Giving up her practice was difficult, she says, though she's found deep satisfaction as a part-time volunteer high school biology teacher. Exercise helps, too. And so do friends, who boost energy by helping keep her morale up.  A year ago, as she was finishing chemo, her friends took cuttings from
their own yards and planted a "recovery garden" in hers. Recently, they got together to celebrate the flourishing garden and Jennings' courage. Not only could their energy prove contagious, the garden's may, too. It's doing so well, she says, "it's as if it's imbued with some kind of magic."

Drug-free ways to fight weariness:

A number of studies have shown that exercise - even gentle walking several times a week - seems to boost energy, says Paula Rieger, a nurse practitioner at the University of Texas MD Anderson Cancer Center and president-elect of the Oncology Nursing Society. 

Using energy wisely - saving it for the things you really care about - also helps, says Dr. Donna Greenberg, a Massachusetts General Hospital psychiatrist. "Be thrifty with energy," she says. Delegate jobs - like grocery shopping - that someone else could do. Go to one social event, not two. If you're freshest in the morning, do the important things then, and then rest.

And try to avoid self-criticism for feeling tired. "People are harsh on themselves for not being able to fulfill obligations and for needing help," Greenberg says. "Fatigue is invisible and there's no
lab test for it.  That means that people often question whether their fatigue is physical or emotional, and it's hard to know whether to push yourself or rest."

Many tired patients also assume that their fatigue is a sign that their cancer is progressing. Often, that's not true.

Learning to expect fatigue also takes some of the worry out of it,  cancer researchers say. Keeping a diary of the ebb and flow of energy can help, too, particularly in helping tease apart the different patterns of fatigue.  If you're reasonably energetic and motivated in the morning, but then fade, that's a sign you're not depressed but simply run out of energy.  If you can hardly get out of bed in the morning and have lost interest in doing normal things, that's a clue you may be depressed.  Depression is highly treatable with anti-depressant medications and psychotherapy.

Disrupted sleep can also lead to fatigue, so sleep "hygiene" - sticking to a regular sleep-wake cycle and avoiding caffeine and other stimulants in the evening - helps.  And diet can help, too. Make sure you're getting enough calories and that you plan meals that appeal to you."

Diana's comments: 

Find a local place to exercise and go just once a week.  I am not, nor ever have been athletic.  I used to love walking, but now get exhausted after a slow 20 minute walk downtown.  Because of a green poster on the Pro Tire Store in SLO, I joined a beginning belly dancing taught by Mary Donnelly at the American Dance Company in SLO (beladi, not cabaret) class.  [ If you live in the area of San Luis Obispo and want to join, phone the World Dance Company at 805/473-9508.   Each series is 4 months and culminates in the Basket Dance.]

Joining a class is the secret.  You are with other women who sweat with you and you cheer each other on.  My teacher, Mary Donnelly, is a kind woman who has taught third graders at the SLO Mission School and also belly dancing for 20 years.  So she has that wonderful patience with people like me who are tired from having cancer and chemo. 

After working 8 hours, I often  am too exhausted to go to belly dancing.  Then I think to myself, "It's just one little hour.  I can  do it."  I go to class, and for some reason a smidgen of energy comes inside of me.  Compared with my teaching days (I was 49 and had a mastectomy with no chemo) when I also went to school and earned 2 more degrees, plus created 8 hours after work, my energy level now is pitiful.  But at least I'm not as tired now as I was after my second mastectomy with chemo in 1997. 

If you have comments about your tiredness due to dealing with cancer, chemo and/or radiation, please write to me and I'll post what you say on this page.
 

Diabetes, Asparteme and Cancer