Ask-the-Expert Online Conference
The Ask-the-Expert Online Conference called Managing Fatigue During and After Treatment featured Diana Dyer, M.S., R.D., Tish Knobf, Ph.D., R.N., F.A.A.N., A.O.C.N., and Lillie Shockney, R.N., B.S., M.A.S. answering your questions about ways to keep up your energy, how nutrition can affect fatigue, and how exercising can help.
Editor's Note: This conference took place in January 2008.
Questions from this conference
- Fatigue normal or due to thyroid?
- How to prepare for chemotherapy?
- Can fatigue last for years after treatment?
- Megace for fatigue after chemo?
- Continue to exercise with no motivation?
- Acupuncture for fatigue/hot flashes?
- Tamoxifen to blame for fatigue, memory problems?
- Easier to exercise with Taxol?
- Hope for fatigue after 3 years?
- Fatigue after mastectomy normal?
- How to build red blood counts?
- Overcome fatigue while continuing treatment?
- How to raise white blood count?
- How to support fatigued wife on pain meds?
- Help with aversion to food?
- Vitamin supplements for fatigue?
- Provigil for fatigue?
- Herceptin/Femara cause fatigue?
- Does rest help reduce fatigue?
- Fatigue common with radiation therapy?
- Lose weight before chemo treatment?
- Help for depression with liver mets?
- Relief for fatigued mother?
- Benefits of noni juice/green tea?
- Can hot tea help fatigue?
- Tips to sleep through the night?
- Question from Kathy: I am still plagued by fatigue, even after 1 year out from chemotherapy and radiation. Many times I am so tired, I feel ill. I get regular checkups with my oncologist, with blood tested every 3 months. All is within the "normal limits." Should I have my thyroid levels tested, or am I just one of the unlucky ones that will have continued fatigue for an unknown time?
It is not unusual for some persons after combined therapies for cancer to experience fatigue for longer than a year. And it's sometimes a year and a half before you get back to your normal energy levels. Your energy levels may be influenced by whether you are continuing to be a couch potato or whether you have begun to do some physical activity like walking every day. You can become unconditioned if you haven't resumed some daily physical activity.
Related to your question about should your thyroid be checked, there are some cases where women who have had breast cancer have had some thyroid problems, so that's a very reasonable question to ask your physician.
If you haven't begun any physical activity you should start slowly, according to what you can do. You can do 10 minutes. If you have a pedometer, the goal with a pedometer is 10,000 steps a day. So, with a pedometer you just start with the number of steps you walk each day and increase it by 50 to 100 steps each day as long as you can tolerate it, until you can reach a higher goal.
- Question from Sarah: I am newly diagnosed with stage III and have not started my chemotherapy yet. Any recommendations to prepare for this journey?
- Answers - Tish Knobf I think the first thing when you're embarking on a new course of chemotherapy is to make sure that you have the information about the treatments and the predicted most likely side effects you are going to experience, so you are prepared to manage the side effects successfully. Most women with breast cancer who receive the chemotherapy before surgery react very much the same as any other chemotherapy. So, it's knowing what drugs you're on and having the information to successfully manage any potential side effects. To prevent the fatigue commonly associated with chemotherapy, it's best if you can initiate mild-to-moderate daily exercise such as walking 10-20 minutes every day. We know from research that even for patients who are on treatment, small amounts of exercise each day, like walking 20 minutes, can actually prevent fatigue.
- Diana Dyer, M.S., R.D. Nutrition is the fuel for your body and you need the proper fuel to prevent the fatigue. So you'll need a balanced diet of lean proteins, whole grains, fruits and vegetables, and healthy fats in moderate amounts to maintain your weight and keep from gaining weight during chemotherapy, which is common. There are multiple reasons that contribute to weight gain during chemotherapy. Probably thought to be the most common is the decrease in activity that is associated with the therapies and leads to the fatigue.
- Lillie Shockney, R.N., B.S., M.A.S. Oftentimes patients, and most particularly their family and friends, assume that a woman will have weight loss due to chemotherapy, which was true 30 and 40 years ago. Today, that's not the case. However, because of family and friends assuming it, you will be showered with comfort foods brought to your door -- cakes, pies, pastries -- that are lovely but very high in fat. You may feel required to eat them, because they've been given to you as a present. Family members avoid eating them because it is your present. You should send out a broadcast email saying "One of the best ways to help me is to provide me nutritional support that will be healthy for me during chemotherapy, concentrating on a well-balanced diet rather than comfort foods." That way you can head it off at the pass rather than eating and regretting later.
- Diana Dyer, M.S., R.D. What I did was to hand out healthy recipes to my friends who wanted to bring me meals, rather than making them guess what I thought would be healthy. And only in one case did I end up with a bucket of fried chicken on my front doorstep. Lean proteins in general will help, particularly lean red meats, to increase the red blood cell count. Probably the most important thing is lean proteins in general, which will help keep the white blood cell counts up too. You need a lot of proteins to actually make the blood cells and rebuilt muscle and tissues damaged in therapy.
- Question from Anonymous: My treatment has been bi-lateral mastectomy, Adriamycin/Cytoxin/Taxol, radiation, and Herceptin. Can fatigue resulting from this treatment be ongoing for months, and even years? It has been over 1 year since my last treatment, and I'm still fatigued more than normal.
That is a long treatment for breast cancer, and it is not unreasonable that fatigue continues for months, if not for a year or year and a half. We have limited longitudinal research that tracks women for a year or year and a half. We have found for some women, particularly if they're symptomatic from the Taxol (chemical name: paclitaxel) they've received, and if they have muscle aches and joint pain, many of those tensions can contribute to the feelings of fatigue. And, combined with not wanting to engage in physical activity, it can become a vicious cycle of resting and the more you rest, the more fatigued you get.
Just think if you're in bed with the flu for a week, you don't on day 8 get up and feel terrific. It takes quite a bit longer than that after a week of not being active to regain your energy. It's very analogous with your breast cancer treatment if you've had a very long course of treatment that it's going to take you much longer to recover.
- Lillie Shockney, R.N., B.S., M.A.S. What about issues associated with a patient's psychological well-being after treatment? For example, feeling clinical depression and figuring out how to emotionally transition back into her life which has been disrupted for so long.
The majority of patients when they finish treatment describe it as somewhat of a feeling of abandonment, like they've fallen off a cliff. They've been so busy with treatment, once they are done, for most women they are left on their own to resume a "normal" life. Psychologically or emotionally, the next 6 months are filled with uncertainty, anxiety, and challenges with trying to resume a "normal" life. And many concerns and fear of recurrence surface at a time when the support system of the healthcare providers is much less than when they were in treatment.
We've just recently begun developing supportive programs to help women transition physically and emotionally in the first year after treatment. We know that physical activity after treatment can not only improve fatigue, but it definitely has significant psychological benefits. Women with breast cancer who engage in physical activity feel better, they feel more resilient, they're less depressed. So, there's a definite link between physical energy and psychological resilience.
- Question from Nancy: What is your opinion of taking Megace Oral Suspension to help appetite and fatigue after chemotherapy?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. In the case of this particular drug, it would be best for you to have a consultation with your medical oncologist about why he's prescribing it at this time and what its purpose is.
- Question from JanH: It's been 2 months since my last chemotherapy session, and I still find that exercise wears me out, instead of energizing like it used to. Should I wait or continue? I'm a believer in the benefits of regular exercise, but motivation now is hard. Thanks.
- Answers - Diana Dyer, M.S., R.D. From personal experience, having experienced profound and prolonged fatigue after my first chemotherapy, what I wish I would have done is actually hire a personal trainer. Retrospectively, that would have helped me get off the couch and actually exercise and have some expertise guiding me so I wasn't trying to overdue it from determination and also guilt at how poorly I was feeling. So, it's a downward spiral and I think having that objective person outside the emotional realm I was in, helping to guide and motivate me, would have been very beneficial.
- Lillie Shockney, R.N., B.S., M.A.S. I think, if it's not realistic to get a personal trainer, because there might be expense involved, get a friend to exercise with, to be your cheerleader and motivator. That could be helpful. This may not be something you can do by yourself, but having someone there physically with you, supporting you and cheering you on could be a very good motivator.
- Question from Rita: Any data on effectiveness of acupuncture in combating fatigue and/or hot flashes?
- Answers - Diana Dyer, M.S., R.D. I'm not familiar with the bulk of the data on acupuncture. I know there's an NCI-sponsored clinical trial gathering patients right now evaluating the effects of acupuncture on fatigue.
- Tish Knobf There have been a couple of trials with acupuncture for hot flashes and there are conflicting results. So, some studies suggest there may be a benefit and some studies suggest there is not any benefit.
- Lillie Shockney, R.N., B.S., M.A.S. If your hot flashes are severe you may want to talk with your doctor about trying Effexor (chemical name: venlafaxine), which though it's an anti-depressant, has been proven to reduce hot flashes in women on hormone therapy. There's a wonderful section on breastcancer.org about practical solutions for managing fatigue, hot flashes, and other hormonal therapy side effects.
- Question from Lisa: I am still fighting fatigue a year after treatment. I wake up feeling like I have been hit by a Mac truck and my memory and vision are not so clear either. Do you think it could be the tamoxifen I am on?
Memory problems are very common among women who receive chemotherapy. It's not totally clear whether it's related to hormonal changes, either from going into menopause, or being on hormonal therapy, or from the chemotherapy. Or both. And also, I think, physical fatigue and emotional distress can contribute to problems with memory, attention, and concentration. The most common complaints of women are forgetting, having trouble multi-tasking, and not having the same level of concentration as they had before.
Suggestions to help both fatigue and memory problems would be approached in several different ways. For some women, it may be getting some psychological support. For some women it may be trying to increase their physical activity, to begin to increase their stamina. And for other women, they may need to develop skills to help them compensate for the memory problems, such as writing notes or keeping a calendar.
- Question from Elizabeth: I planned to continue exercising during my dose-dense AC chemotherapy, but found it difficult because of extreme weakness. Will it be easier during the weekly Taxol?
- Answers - Tish Knobf It is not uncommon with dose-dense AC [Adriamycin (chemical name: doxorubicin) with Cytoxan (chemical name: cyclophosphamide)] to have a low red blood cell count. That may be the reason why physical activity is challenging and you feel fatigued. If you have a low red blood cell count and it's corrected, your physical energy might, in fact, be gradually improving.
- Question from LoriH: I finished chemotherapy and radiation 3 years ago and I still suffer from fatigue. I sleep well but when I wake up I feel like I have been up all night. I exercise and take vitamins, which does not seem to help. Any advice? Will this eventually improve? Thanks.
- Answers - Diana Dyer, M.S., R.D. I'm also one of these people who experienced a 3 year fatigue in the time frame between my 2 breast cancers. It was profound and it was prolonged. And, yes, it lifted without any notable reason why. But there is definitely light at the end of the tunnel.
- Question from Roberta: It has been 5 years since my mastectomy and I still do not feel like myself. Regular errands and housework just seem to take all my energy away. Is this normal?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. You mention that your treatment was mastectomy, but didn't comment on whether you had additional treatment afterwards. Assuming that your treatment was limited to mastectomy surgery and it has been 5 years ago would make me question whether or not the residual "side effects" that you're experiencing may be linked to your psychological well-being. I encourage women to look at mastectomy surgery as transformation surgery. The mission was for your surgeon to transform you from a breast cancer victim into a survivor. So, I hope when you look down you don't see that your breast is gone, you see that the cancer is gone.
- Question from J: How do I build up my red blood counts?
- Answers - Diana Dyer, M.S., R.D. A low red blood count can be due to several reasons. It can be iron deficiency or it could be folic acid deficiency, or more uncommonly Vitamin B12 deficiency. The first step is always to know why your red blood cell count is depressed. If it is iron-deficiency anemia, foods such as liver and other lean red meats are good sources of iron. Plant foods also have iron but you need to add accompanying food with high amounts of Vitamin C to help with the absorption of the iron.
- Lillie Shockney, R.N., B.S., M.A.S. I'll add that many people don't like liver but there are many ways to disguise it, such as chicken livers wrapped in bacon and broiled. Then what you are really tasting is the bacon and not the liver.
- Question from Lisa: What about for those of us who are never "done" (i.e., stage IV)? How do we balance the physical and emotional changes that we have experienced and overcome fatigue, in spite of the meds we are on and our new physical limitations?
- Answers - Tish Knobf With advanced breast cancer, there are a variety of different treatments today. So, symptoms may be influenced by the specific treatment or by the disease. The success of treatments has nearly transformed breast cancer into a chronic illness with women living many more years than they ever did before. It is important to find resources to help women maintain physical and psychological health. For some women that may be a support group, it may be a partner, it may be a one-on-one counselor, and it may be a health care provider to help manage the fatigue or muscle aches or emotional distress.
- Question from TerryO: What can be done to raise the plasma count and the white blood count?
- Answers - Diana Dyer, M.S., R.D. I'm not sure what you mean by raising the plasma count. The most important thing for actually raising white blood count is making sure you have enough protein in your diet for your body to make the cells. Lean chicken, other poultry, other fish, beans, lean dairy products.
- Tish Knobf For many patients, the bone marrow just needs time to regenerate the cells.
- Diana Dyer, M.S., R.D. And time can be variable. For some people it bounces back right away and in other people it takes longer.
- Question from Steve: My wife has advanced breast cancer and recently began treatment with Navelbine. Within 24 hours of treatment, her fatigue and pain increase. To combat the pain, she is taking Oxycontin. Between the Navelbine and Oxycontin, she has no energy and loses desire to eat well and exercise. What can I do to support her?
- Answers - Tish Knobf When starting a new pain medicine like Oxycontin (chemical name: oxycodone), there is often a transition time for your body to adjust to the symptoms. So, it's not uncommon that you may feel a little more tired, maybe a little less clear in your thinking in the first week or 2. Especially if your dose needs to be adjusted, so you need to speak with your physician and your nurse about the symptoms and the schedule of your medicine.
- Diana Dyer, M.S., R.D. When a person is in pain, the most helpful thing is eating small, frequent meals as opposed to typical, traditional large 3 meals a day. Eating what they want, when they want. And as the pain comes under control the appetite and desire to eat will also normalize.
- Lillie Shockney, R.N., B.S., M.A.S. It's wonderful that you're online representing her this evening with the goal of helping her with her treatment. As we know, breast cancer is a disease that affects not just the patient but everyone who loves her. Don't ever underestimate each moment you spend with her, how valuable that is to her and her fight against this disease.
- Question from Soyster: I know that it's important to have a balanced diet to manage fatigue, but I have no appetite and sometimes the smell of food or thinking about eating makes me feel sick. Do you have suggestions on how to keep eating during all of this?
- Answers - Diana Dyer, M.S., R.D. I think the most important thing is to eat small amounts, more frequently, so the actual sight of a full meal doesn't overwhelm you and decrease your appetite. If you're not able to cook because your fatigue is profound, enlist the help of your family, friends, and all of your support network. Having friends bring your meals also helps eliminate the smell of food cooking in the house, which will help to increase your appetite.
- Lillie Shockney, R.N., B.S., M.A.S. Consider having peppermint Life Savers or peppermint gum while a meal is being prepared and you're most noticing the odors from the cooking, because peppermint can help offset those strong odors.
- Diana Dyer, M.S., R.D. To minimize off tastes, which often are a result of off odors, I found that having lemon slices or lime slices for water to accompany meals was very helpful. It helps in eliminating some of the unusual tastes in my mouth that were the result of the chemotherapy drugs.
- Tish Knobf I have a basket of peppermint in my office that was given to me 20 years ago by a patient, and I refill it every week.
- Question from SandraL: Are there any vitamin supplements suggested to fight fatigue? Thank you.
- Answers - Diana Dyer, M.S., R.D. There are a couple of trials going on that are sponsored by the National Cancer Institute that are looking at other dietary components, such as Carnitine supplementation and its effect at eliminating fatigue. Those studies are ongoing, so there are no recommendations at this point.
- Question from MVA: Can you take Provigil for fatigue?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. None of the three of us are familiar with that so we can't weigh in on it.
- Tish Knobf Stimulants are currently under investigation and there's not enough information at this point from these trials to make a recommendation.
- Question from Annie: I have stage IV breast cancer. My last go-round of chemotherapy was Taxol and carboplatin; I still having lots of trouble with fatigue. Could either Herceptin or Femara be contributing? My blood counts are good.
- Answers - Lillie Shockney, R.N., B.S., M.A.S. Congratulations on finishing your chemotherapy.
- Tish Knobf It's not unusual to be fatigued from the chemotherapy in the first year. And, of course, these additional treatments may be contributing, as you are continuing to have to go to get the treatments. It may take your body some time to adjust to the Femara (chemical name: letrozole) treatment. We recommend that you slowly begin to increase your physical activity.
- Lillie Shockney, R.N., B.S., M.A.S. If you go to breastcancer.org discussion boards you'll find a sense of camaraderie with other posters that are feeling exactly as you are feeling. That isn't to imply that misery loves company but that this is "normal."
- Diana Dyer, M.S., R.D. I think you'll also find people who have made the transition and be able to see that there's light at the end of the tunnel.
- Question from Getting Scared: Does rest help reduce fatigue?
- Answers - Tish Knobf Rest can be helpful for fatigue in conserving your energy for the activities that you want to do. But too much rest creates a vicious cycle where you become more fatigued. So this needs to be balanced by some physical activity in the day. In a radiation therapy study where women complained about fatigue, a good example of rest was taking a nap in the afternoon so they'd have more energy in the evening. Or women who worked said they retired to bed earlier to get a little more rest during the night.
- Question from Chris: I will start radiation this Monday - I have completed chemotherapy - and I am really concerned about the fatigue factor. I am the bread winner and I cannot afford to be out of work. I need to be in control of something... even if it is controlling fatigue.
- Answers - Tish Knobf Most women who get whole breast radiation over 6 weeks have very mild symptoms. Fatigue is the most common, but generally doesn't start until about week 3 and then persists for a few weeks after radiation. However, women state that this is really a mild fatigue and for most women does not interfere with their ability to continue working.
- Question from Nimi: I may be going for chemotherapy in about 2 weeks. I am about 5-10 pounds overweight. Should I try to lose at least 5 pounds before the therapy?
- Answers - Diana Dyer, M.S., R.D. No. Focus on a balanced diet, exercise, and maintain your weight during chemotherapy. Start a sensible weight loss diet after chemotherapy.
- Question from Nancy: I have suffered from clinical depression for years and for the last 2 years have been treated for breast cancer metastasized into the liver, so cannot take my effective depression meds. I can take Zoloft but it doesn't help much. All other depression meds go through the liver so I cannot take them. Do you know of any depression meds that are not processed through the liver?
- Answers - Lillie Shockney, R.N., B.S., M.A.S. No, all are processed through the liver.
There are some alternative strategies to medication for depression, including emotional support and physical activity – well-known to improve depressed moods.
Editor's Note: Zoloft is known to reduce the effectiveness of tamoxifen. If you are taking tamoxifen, talk to your doctor about alternative antidepressants. For more information, please visit the Breastcancer.org Tamoxifen page.
- Question from Swenwen: I am only 32 years old and can not keep up with my 16-month-old. I am active and eat a balanced diet. I received Cytoxan, Taxol, and Adriamycin. How long until this gets better?
- Answers - Tish Knobf Healthy women with 16-month-olds are also tired. However, recognize that fatigue is a known side effect of treatment.
- Diana Dyer, M.S., R.D. Friends helped me by taking care of my 2-year-old when I was too fatigued to do it myself all day long.
- Question from TerryO: Is there any real benefit to noni juice or green tea once you have been diagnosed with breast cancer or metastases?
- Answers - Diana Dyer, M.S., R.D. There are at least 2 studies that I'm aware of from Japan that have correlated increased consumption of green tea with decreased occurrence of stage I and II of breast cancer. The amounts consumed in those studies were in the order of 2-5 cups (Japanese style, so little cups) of tea a day. Very reasonable, manageable amounts. These are not intervention studies, these are simply observation studies. But it does appear that there may be some benefit from green tea consumption for reducing the risk of breast cancer.
- Question from J: Is decaffeinated hot tea ok?
- Answers - Diana Dyer, M.S., R.D. Caffeine can give an instant lift to perhaps alleviate fatigue, but it's not going to be long-lasting.
- Question from Lissa: I fall asleep well, then wake at 3 am and spend time thinking about everything I need to do. When I do fall back to sleep, I am exhausted when I again get up in the morning. Any tips to sleeping through the night?
- Answers - Tish Knobf Waking up and having trouble falling back asleep can be related to anxiety. It could be related to menopausal symptoms. It could be related to emotional distress. So there are recommendations for what's called good sleep hygiene. And that includes not taking naps late in the day, going to bed at the same time every night, and if you do wake up during the night don't stay in bed. Get up, read or do something for a while, and then try and go back to bed.
- Lillie Shockney, R.N., B.S., M.A.S. I find it helps if you make a list of the things that you are worrying about that you need to take care of. And by making a list you're committing yourself to address them during daytime, awake hours rather than having to dwell on them and trying to remember them in the middle of the night.
- Tish Knobf Learn some relaxation strategies such as learning meditation or relaxation for when you do have trouble going back to sleep.