Tamoxifen side effects fatigue

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10 Years on Tamoxifen: What Doctors and Breast Cancer Patients Think

THURSDAY, Dec. 6, 2012 — Women who take the breast cancer drug Tamoxifen for a longer period of time could further reduce their chances of breast cancer recurrence, British researchers say in a new study. Older studies indicated that five years after initial breast cancer treatment was the ideal amount of time for women with estrogen-positive breast cancer to take the drug, but the research suggests that taking the drug for a decade could further reduce the long-term risk of breast cancer recurrence and of dying from cancer. The death rate for women in the study who took the drug for 10 years was 12 percent, compared to 15 percent for those show took it longer.

Tamoxifen is in a class of medications called antiestrogens that block the activity of estrogen. These drugs are may stop the growth of some breast tumors that need estrogen to grow — called estrogen-positive tumors. Tamoxifen, which comes in tablet form, is used to treat breast cancer that has spread to other parts of the body in both men and women, to treat early breast cancer in women who have previously been treated for it, to reduce the risk of developing more serious types of breast cancer in some women, and to reduce the risk of breast cancer in women who are at high risk, according to the National Institutes of Health.

“Tamoxifen has been used for more than 20 years to treat women with certain types of breast cancer, but it’s still not exactly clear how long a woman should take it,” says Mallika Marshall, MD, Everyday Health’s Medical Director. “Earlier studies have shown that taking it for at least five years is better than taking it for just two, now it looks like taking it for even longer is even better.”

Tamoxifen: Not Without Side Effects

However, the possibility of taking the drug for a longer period of time might not be met with open arms by some patients. Side effects include hot flashes, vaginal dryness, mood swings, fatigue, and nausea.

More serious side effects include cancer of the uterus, blood clots, and strokes. The most serious side effects are seen in post-menopausal women, says Stephanie Bernik, PhD, chief of surgical oncology at Lenox Hill Hospital in New York City. “Pre-menopausal women are shedding the lining in the uterus, so it’s harder for them to develop cancer.”

But for some women, the hot flashes and mood swings are reason enough to stop taking tamoxifen.

“I’ve had patients who say they became depressed. Often enough they come off the drug and they feel better, so it probably is in some way connected,” says Dr. Bernik. “I’ve also had women tell me their hot flashes are so bad they can’t function.”

“Tamoxifen can cause a number of side effects, and some women choose to stop it prematurely for that reason,” says Dr. Marshall. “Many cancer experts say their patients are counting down the days until they finish their five-year treatment.”

A few Everyday Health readers took to Facebook to share their experiences with tamoxifen. Kathy Hanlin McPherrin wrote, “I’m a stage 3c cancer survivor. Six months chemotherapy, mastectomy, six weeks radiation and on year two of five for tamoxifen. I’ve stayed on it, but some side effects are tough. Emotional roller coaster, hair thinning. But my oncologist wants me on it for five years followed by a life-long estrogen blocking drug after that. Tempted to quit tamoxifen at times.”

Everyday Health Breast Cancer blogger Kathy-Ellen Kups had a different experience: “After only three years on Tamoxifen, I was prescribed Arimidex but found those side effects of joint pain, fatigue, and malaise unbearable. I urged my doctor to put me back on Tamoxifen for a final two years… . I took Tamoxifen for five years with no noticeable side effects,” she writes in her blog.

Despite side effects, many experts believe the benefits of tamoxifen outweigh the risk of serious complications for most women.

More Risk for Post-Menopausal Women

The new tamoxifen study seems to have been well done, says Bernik, but it doesn’t address what to do if a woman enters menopause during treatment.

Due to increased risks, she says, tamoxifen is not the first-choice drug in post-menopausal women. Those who have gone through menopause are given a different drug, called an aromatase inhibitor, that has less adverse health risks and works better in an older age group.

Some studies show that taking tamoxifen for two years followed by an aromatase inhibitor works better in post-menopausal women, but this recent study doesn’t address switching to the aromatase inhibitor, says Bernik.

“If someone is 40 and they take tamoxifen until they are 45 and they are still getting their periods, can you use this as a bridge and take the aromatase inhibitor after?” asks Bernik. “It’s wrong to assume there’s a benefit if you take tamoxifen for 10 years and aromatase inhibitors later. You can’t just assume that, you have to show it with a study.” She believes studies need to be done to look at different lengths of time for each drug, especially for those who may enter menopause during treatment.

The Low Cost of Tamoxifen

Tamoxifen, sold under the brand names Nolvadex and Soltamax, is less expensive than other hormonal treatments used to treat breast cancer, both physicians say. According to Susan G. Komen for the Cure Foundation, tamoxifen costs about $100 per month but is usually covered by insurance. If a woman doesn’t have insurance or her insurance doesn’t cover the cost, there are assistance programs that can help.

Bernik points out the benefit of taking tamoxifen for an extended period of time is relatively small.

“If you give the drug to 100 women, you’re changing the number of people that don’t do well from 15 percent to 12 percent. You’re only changing the outcome for three out of every 100 patients,” she notes.

If a patient feels it’s worth it, they should discuss the tamoxifen option with their doctor, Bernik recommends. “Women have to understand that…if they feel that changing the course of three people is enough because they think they might be one of those people, than they should consider it.”

Gel that could transform the lives of breast cancer patients: Many women stop taking Tamoxifen pills due to sickness and fatigue. Now an alternative is on the way

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5 Things to Know About Tamoxifen, the Breast Cancer Drug Jill Goodacre Has Been Taking Since Her Surgery

In this week’s issue of People, former Victoria’s Secret model Jill Goodacre opens up about her five-year battle with breast cancer and the medication she’s been on to keep the disease at bay. Goodacre, who’s married to singer and actor Harry Connick Jr., went through surgery and radiation in 2012 after a tumor was detected via sonogram, and has taken the drug tamoxifen ever since.

As she approaches her five-year cancer-free mark, Goodacre says she’s looking forward to stopping tamoxifen. The medication can cause side effects, including weight gain, which Goodacre admits she’s struggled with.

“I’ve always been a pretty fit person, and so to be just rounder and heavier and not to really be able to do much about it—that’s been hard,” she told People. “It’s taken a lot out of my self-confidence.”

That’s a common problem among breast cancer survivors, says Nikita Shah, MD, medical director of the Cancer Risk Evaluation Program at Orlando Health UF Health Cancer Center. (Dr. Shah has not treated Goodacre, but does prescribe tamoxifen to many of her own patients.)

Still, tamoxifen can be lifesaving, says Dr. Shah, and for many women, its benefits outweigh its potential side effects. Here’s what else breast cancer patients and their loved ones should know about the pros and cons of this treatment.

It can be a treatment or a prevention

Tamoxifen is in a class of drugs known as selective estrogen receptor modulators, or SERMs. These drugs work by attaching to estrogen receptors in breast cells, blocking estrogen’s ability to cause cell mutations that lead to cancer.

The drug—taken as a pill or a liquid—is often prescribed to pre-menopausal women after surgery for early-stage breast cancer. Because surgeons can’t always be sure they removed all of the cancer cells, tamoxifen can reduce the risk that those leftover cells will continue to multiply and the cancer will return.

It can also be prescribed to women, pre- or post-menopause who have not been diagnosed with breast cancer, if they have a high risk (1.67% or higher) of developing it over the next five years. These women are usually 35 or older, and have risk factors such as a family history of cancer or a history of abnormal biopsies.

RELATED: The 5 Breast Cancer Stages, Explained

It’s only effective for some types of cancer

Studies have shown that tamoxifen can reduce the risk of cancer in high-risk women by more than 30%. But because the drug affects estrogen receptors in the body, it only works against cancers that are estrogen-receptor-positive or progesterone-receptor positive. Together, these make up about two-thirds of all breast cancers, according to BreastCancer.org.

“The way tamoxifen works is you’re depriving your cancer cells of estrogen, which is their nutrition,” says Dr. Shah. “So that will only work for the cancers that are estrogen-fed or progesterone-fed.”

RELATED: 25 Breast Cancer Myths Busted

Other factors can affect how well it works, too

Some people have an abnormal version of an enzyme called CYP2D6, which may make tamoxifen less effective. (Some research has suggested this, although larger, more recent studies .) Patients may want to consider being tested for this enzyme abnormality before starting tamoxifen, to make sure they’ll get the full benefit.

Certain medications, including diphenhydramine (Benadryl), cimetidine (Tagamet), and some antidepressants can also block the activity of the CYP2D6 enzyme. “That’s why it’s very important to make sure your oncologist knows every medication you’re taking, including supplements,” says Dr. Shah.

Five years is recommended, but 10 years may be better

After breast cancer treatment, most women who take tamoxifen take it for five years. But recent studies have suggested that it can reduce women’s risk for breast cancer even further if it’s taken for 10 years, says Dr. Shah.

However, tamoxifen is only recommended after breast cancer treatment for women who haven’t gone through menopause yet; after menopause, other drugs—called aromatase inhibitors—are known to work better. “If a woman becomes post-menopausal during those five or 10 years she’s on tamoxifen, we will switch her to this other group of drugs that is 20 to 25% more effective,” says Dr. Shah.

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It does have side effects—but they may be overestimated

Despite its protective effects against cancer, some women stop taking tamoxifen because of side effects like hot flashes, mood swings, nausea, vomiting, or weight gain or loss. The drug can cause menstrual irregularities, and changes in sex drive or sleep patterns as well. (Tamoxifen also raises the risk for more serious health issues, like blood clots and uterine cancer; though for most women, the overall risk for these problems is still small.)

But many women who take tamoxifen are perimenopausal, and a recent study found that some women mistake naturally occurring symptoms of menopause with side effects of tamoxifen. In the study, symptom-related drop-out rates were similar across a nearly five-year period for women who took tamoxifen and for those who took a placebo pill.

“Patients will say I started taking tamoxifen and I gained 40 pounds,” says Dr. Shah. “But that’s probably a combination of hormonal and lifestyle changes they’re going through. Tamoxifen can cause some fluid retention, and it could maybe cause a 2- or 3-pound weight gain, but beyond that there are probably other things going on as well.”

Dr. Shah says it’s important to talk to your doctor if you’re experiencing side effects, rather than stopping a recommended course of tamoxifen. “There are ways to manage the side effects, and most of them are not permanent. They get better with time,” she says.

Managing Cancer-related Fatigue

Fatigue is common in people with cancer, but it’s different for each person. While one person may feel too tired to even get out of bed, another may be able continue working and do most of the things they’ve always done. Fatigue might get better after treatment ends for some, but last many months after treatment for others.

Doctors, nurses, social workers, physical therapists, nutritionists, and a number of others might be involved in treating your fatigue. Fatigue is often caused by more than one problem. Treating a certain problem, like anemia, might make you feel better, but other things may need to be done, too. For this reason your cancer care team might have you try many different things to help manage your fatigue.

There’s no way to know if you’ll have fatigue, how bad it will be, or how long it will last. In some cases, it can be hard for the doctor to figure out exactly what’s causing your fatigue. Still, there are things you can do to help manage it. Here are some tips to help manage cancer-related fatigue:

Talk to your cancer care team

Treating fatigue is an important part of care for you and your family. It’s often possible to lessen fatigue so that life can be more normal. But before anything can be done to help you, your cancer care team must know about your level of fatigue, or how bad your fatigue is.

Describing fatigue

No lab tests or x-rays can diagnose or show your level of fatigue. The best measure of fatigue comes from the way you describe your fatigue level to your cancer care team. But fatigue can be hard to describe.

People with fatigue describe it in many ways. They may say they feel tired, weak, exhausted, weary, worn-out, or slow. They may say they have no energy and can’t concentrate. They also talk about having heavy arms and legs, little drive to do anything, being unable to sleep or sleeping too much. They may feel moody, sad, irritable, or frustrated. Patients rarely describe what they’re feeling as “fatigue” unless their cancer care team suggests it.

How bad is your fatigue?

You can describe your level of fatigue as none, mild, moderate, or severe. Or you can use a scale of 0 to 10, where a 0 means no fatigue at all, and a 10 means the worst fatigue you can imagine. Ask your doctor or nurse how to describe your fatigue so they can understand how it affects your everyday life.

If you have moderate (4 to 6 on the 0 to 10 scale) to severe (7 to 10 on the 0 to 10 scale) fatigue, your doctor could ask you for more information. You might be asked questions like:

  • When did the fatigue first start?
  • When did you first notice that this fatigue is different?
  • How long has it lasted?
  • Has it changed over time? In what way?
  • Does anything make it better? Worse?
  • Are there times of day that you notice it more?
  • How has the fatigue affected the things you do every day or the activities that give meaning and enjoyment to your life?
  • Do you have any other problems or concerns?

In planning how to treat your fatigue, your doctor might take into account things like your type of cancer, the type and length of treatment, how likely the treatment is to cause fatigue, and your response to treatment.

Fatigue or depression?

Some signs of fatigue often look a lot like those of depression, and it’s easy to confuse the two. Depression involves an inability to feel pleasure – people who are depressed feel sad or unworthy. They may give up hope. You can have fatigue and not be depressed, although some people have both fatigue and depression.

Sometimes it may be hard to find a label for what you’re feeling. Your doctor might want you to see a mental health professional to get another opinion on whether depression is part of the problem. If it is, treatment can help.

Try to tell your doctor exactly how you feel and how it affects the things you do. Only you know if you have fatigue and how it’s changing your ability to enjoy life. Talk to your cancer care team so you can find ways to feel better.

Ask about medicines

There’s no magic pill that can make you less tired and give you more energy, but some medicines might help with fatigue. In some cases, fatigue can be bad enough that your doctor or nurse recommends a stimulant medicine for a short time.

If you’re having problems sleeping, your doctor or nurse may suggest a medicine to help you sleep.

More research is needed and is being done in this area, but there are drugs available that may give you relief if your fatigue gets bad.

Call your doctor if:

  • You feel too tired to get out of bed for a 24-hour period
  • You feel confused, dizzy, lose your balance or fall
  • You have problems waking up
  • You have problems catching your breath
  • The fatigue seems to be getting worse.

These may be signs of other problems that need to be treated.

Rest, but not too much

Plan your day so you have time to rest. Take short naps or rest breaks (30 minutes or less), rather than one long nap during the day. Too much rest can lower your energy level and make it harder to sleep at night.

Sleep problems are common during cancer treatment. You may have trouble falling asleep or sleep too much. Certain drugs used to treat pain, nausea, or depression can make a person feel tired and sleepy. Talk with your cancer care team about this. Sometimes adjusting the doses or changing to a different drug can help.

  • Try to sleep 7 to 8 hours each night. Sleep experts tell us that having regular times to go to bed and get up helps us keep a healthy sleep routine.
  • Avoid caffeine in fluids (like coffee, tea, energy drinks, or soda), medicines (like headache remedies), or even in foods (like chocolate) for at least 8 hours before bed can help, too.
  • Avoid exercising too late in the evening.
  • If you’re having trouble sleeping, it can help to see a mental health professional who can work with you on causes and how to address sleep problems.

Stay active

Try to stay as active as you can. Regular moderate exercise – especially walking – is a good way to ease fatigue. And not only can exercise help fatigue, it can help you sleep better, too.

Aerobic and strength-building exercise programs – started only with your doctor’s OK – can lead to better body function, as well as feeling better about your life and well-being. You may need to see a physical therapist to learn the best exercise routines for you at this time.

Talk to your doctor first and always be careful about exercising if you have any of these conditions:

  • Cancer that has spread to your bones (bone metastasis)
  • A low white blood cell count
  • A low platelet count
  • A fever or active infection
  • Anemia (low red blood cell counts)
  • Unsteadiness, frailty, or other problem that might make exercise unsafe for you

These factors can lead to injury, pain, bleeding, or other problems if they aren’t taken into account before you start to exercise. If you have any of these factors, your exercise program will need to be set up by a professional who knows about exercise and cancer.

Save your energy

Conserving (or saving) energy is one way to make sure you have enough energy to do what needs to be done each day. You may need to accept the fact that you can’t do everything you want to do.

Each day, prioritize – decide which things are most important to you and focus on those tasks. Then plan ahead. Spread activities throughout the day. Do things slowly, so that you won’t use too much energy at once. And don’t forget to give yourself time to take short rest breaks between activities.

Don’t push yourself by standing too long or by doing activities in extreme temperatures. Even long, hot showers or baths can drain your energy. Sit when you can – a shower chair may help. And a chair in the bathroom lets you brush your teeth or comb your hair without wasting energy by standing at the sink. Another easy tip is to store items that you use often within easy reach. This way you won’t have to strain or walk to get them.

Get others to help out

Ask your family or friends to help with the things you find tiring or too hard to do. This could include mowing the lawn, preparing meals, doing housework, or running errands. Don’t force yourself to do more than you can manage. Let others help you. This can help them feel useful and get your tasks done, too.

Many people may ask if there’s anything they can do for you. People who offer to help really want to, but they may not know what to do. Asking them to do something specific can give them something to do that really helps you and makes them feel good, too.

You may even want to pick a “job coordinator” who can organize people to sign up for routine chores. Your coordinator can also help others understand if there are times when you’re so tired that you don’t have the energy to talk or visit with people.

Eat well

Many people with cancer have changes in the way they eat, swallow, and taste things during treatment. These changes can make eating difficult. But you need to eat enough for energy and to help your body heal. Be sure to meet your basic calorie needs. (See Tips to get more calories and protein in Once treatment starts.)

Drink plenty of fluids. Dehydration can make fatigue worse. Be sure to get at least 8 cups of fluid each day. If you are losing weight, be sure to include some fluids that have calories, like juices or milk

Try eating some protein, fat, and fiber with each meal and snack to help keep blood sugar levels more stable. This will give you a more sustained feeling of energy from the food you eat. For instance, instead of eating 2 pieces of fruit, try eating 1 piece plus a small handful of walnuts, almonds, peanuts, or other nuts. Or try fruit with cottage cheese.

Do not take large amounts of vitamins or minerals without first talking with your cancer care team. Some dietary supplements can interfere with your cancer treatment, and large doses of some supplements can have harmful effects.

Ask for a referral to a dietitian who can work with you to choose the best diet for you. Talking with a registered dietitian may help you learn ways to manage problems like loss of appetite, diarrhea, nausea, or vomiting. The dietitian also can make sure you are getting enough fluids and nutrients to help keep your blood chemistry balanced.

Lower stress

Having cancer is stressful and cancer treatment can cause even more stress. Talk with a social worker or nurse on your cancer care team about your level of stress. This can help you know if it’s “normal” stress or more worrisome anxiety or depression. Feeling tired might be linked to feeling depressed and anxious.

You may want to think about joining a support group. Sharing your feelings with others can help ease the burden of fatigue. You can also learn coping hints from others by talking about your situation. Ask your cancer care team to put you in touch with a support group. Or contact us to find a group near you.

Mental health counseling, stress management training, and relaxation exercises are some ways you can learn to improve the feelings related to fatigue and help overcome the tiredness you feel.

Distraction

Sometimes feeling tired can become so discouraging and frustrating that it’s easy to let it become all you think about. Try to distract yourself with other things, like listening to music, having relaxing visits with friends or family, or reading a book. These things can give you an escape from your fatigue without using up too much energy.

Attention-restoring activities

Certain activities can help you relax, and focus better. These activities include things like walking in a park, sitting in a peaceful setting, gardening, doing volunteer work not related to your illness, or bird watching. Some people use meditation or guided imagery to clear their minds without leaving home.

Tips for managing your fatigue

Here’s a recap of things you can do to help manage and reduce your fatigue:

  • Talk to your doctor about physical exercise and what’s best for you.
  • List your activities in order of how important they are to you, so you can do the more important ones when you have the most energy.
  • Unless you’re given other instructions, eat a balanced diet that includes protein (meat, milk, eggs, and beans) and drink about 8 to 10 glasses of water a day.
  • Learn ways to deal with your stress. Try to reduce it using things like deep breathing, imagery, meditation, prayer, talking with others, reading, listening to music, painting, or any other things you like to do.
  • Tell your cancer care team about your fatigue. Keep a record of how you feel each day. Take it with you when you see your doctor.

What caregivers can do

  • Help schedule friends and family members to prepare meals, clean the house, do yard work, or run errands for the patient. You can use websites that help organize these things, or ask a family member to look into this for you.
  • Try not to push the patient to do more than they are able to.
  • Help the patient set up a routine for activities during the day.

Remember: There’s no one way to diagnose or treat fatigue. Talk to your doctor or nurse about it. Let them know how bad it is so you can get the help you need to deal with it.

Tamoxifen

What is tamoxifen?

Tamoxifen (Nolvadex®) is a medication in pill form that has been used for more than 25 years to treat breast cancer in women and men. Tamoxifen is one of the most common endocrine therapy drugs. It has been shown to decrease the chance of recurrence in some early-stage breast cancers and to prevent the development of cancer in the opposite breast. Tamoxifen can also slow or stop the growth of cancer cells present in the body.

There are an estimated 29 million women at increased risk for breast cancer in this country, and tamoxifen may offer another alternative to watchful waiting or prophylactic (preventative) mastectomy.

How does tamoxifen affect breast cancer?

Tamoxifen is classified as a selective estrogen receptor modulator (SERM) and works as an anti-estrogen: While the hormone estrogen promotes the growth of breast cancer cells, tamoxifen works by blocking estrogen from attaching to estrogen receptors on these cells. By blocking the estrogen receptors, it is believed that the growth of the breast cancer cells will be halted.

Can tamoxifen prevent breast cancer?

In 1998, the National Cancer Institute (NCI) funded a large research study designed to determine whether tamoxifen would reduce the incidence of breast cancer in healthy women known to be at high risk. The National Surgical Adjuvant Breast and Bowel Project (NSABP) conducted the study, known as the Breast Cancer Prevention Trial (BCPT). The results of the trial showed a 50 percent reduction in both invasive and non-invasive breast cancer in the treated women.

Tamoxifen has also been shown to substantially reduce the risk of developing invasive breast cancer in women who have had ductal carcinoma in situ (DCIS). DCIS is a group of cancer cells that involve only the lining of a duct and have not spread to other tissues in the breast.

When is tamoxifen prescribed?

Tamoxifen should be prescribed only for women at high risk for breast cancer and after a complete medical evaluation of a woman’s individual risk factors. These risk factors include the woman’s age, personal health history and family history of breast cancer.

However, tamoxifen may not be suitable for all women at high risk of developing the disease. Women who should definitely not use tamoxifen include pregnant women, women planning to become pregnant, women with a history of blood clots or stroke or those who are taking anticoagulants. An informed discussion between a woman and her physician is essential in determining the appropriateness of this treatment option.

How long should a woman take tamoxifen?

For reducing the risk of developing breast cancer in high-risk women and in women with DCIS, tamoxifen is generally prescribed for 5 years.

Studies have confirmed that taking adjuvant tamoxifen for 5-10 years reduces the risk of recurrence of the original breast cancer as well as the risk of developing a second primary cancer in the other breast. (Adjuvant treatment is a treatment used to decrease the chances of a recurrence or spread of disease.)

The length of time a woman with metastatic breast cancer can take tamoxifen depends on their response to the treatment as well as other factors.

Does tamoxifen have any other beneficial effects?

Because tamoxifen acts like estrogen in tissue other than breast tissue, women who take tamoxifen may derive some of the benefits of estrogen replacement therapy, such as lowered blood cholesterol. Tamoxifen may also increase bone density, which can slow the development of osteoporosis (bone loss) and reduce the incidence of bone fractures.

What are some side effects I might experience when taking tamoxifen?

For women, the side effects of tamoxifen are similar to some of the symptoms of menopause. Two of the most common side effects are hot flashes and vaginal discharge. The information below does not include all possible side effects, and not all patients who take tamoxifen will have these symptoms. Always contact your doctor if you have questions about your personal situation.

Side effects in women may include:

  • Hot flashes
  • Vaginal discharge
  • Vaginal dryness and/or itching
  • Irritation of the skin around the vagina
  • Irregular menstrual periods
  • Headache
  • Nausea and/or vomiting
  • Skin rash
  • Fatigue
  • Fluid retention and/or weight gain

Side effects in men may include:

  • Hot flashes
  • Headache
  • Nausea and/or vomiting
  • Skin rash
  • Impotence
  • Decrease in sexual interest

Will taking tamoxifen bring on early onset of menopause?

If you are premenopausal and are taking tamoxifen, you may experience menstrual irregularities, vaginal bleeding or cessation of menstrual periods entirely. Depending on your age your periods may resume during or after completion of your tamoxifen course. Please discuss your personal healthcare concerns with your healthcare provider.

What are some precautions and recommendations I should know when taking this medication?

Tamoxifen may affect fertility, so it is important to use some form of birth control while you are taking this medication. However, do not use oral contraceptives (the “pill”) since they may change the effects of tamoxifen. Tell your doctor right away if you think you may have become pregnant while taking this medication.

Take anti-nausea medications only as prescribed by your doctor. Ask your doctor which over-the-counter medications you can take.

Are there any other concerns I should be aware of while taking tamoxifen?

According to data from large treatment studies as well as the BCPT, women taking tamoxifen may have a slightly increased risk of developing blood clots in the lungs or large veins. This may be especially true for women undergoing chemotherapy (anti-cancer drugs) while taking tamoxifen. Women in the BCPT also had an increased risk of stroke. Additional risks may include:

Endometrial cancer: Tamoxifen may increase a woman’s risk of developing endometrial cancer (cancer of the lining of the uterus). However, this risk is less or the same as the risk of postmenopausal women taking single-agent estrogen replacement therapy.

Cataracts: Taking tamoxifen appears to put some women at increased risk for developing cataracts, a clouding of the lens inside the eye. A few patients have also reported eye problems such as corneal scarring or retinal changes.

When should I call my doctor?

Call your doctor immediately if you have a fever of 100° F or higher. You should also call your doctor if you have any questions or concerns or if you experience any of the following:

  • Inability to eat or to drink fluids for 24 hours
  • Uncontrolled vomiting
  • Blurry vision
  • Chest pain
  • Shortness of breath
  • Calf swelling and/or tenderness
  • Vaginal bleeding
  • Any other unusual symptoms

Is tamoxifen used as part of chemotherapy for breast cancer?

Studies have shown that a combination of tamoxifen and chemotherapy drugs after surgery for breast cancer may increase survival rates for some patients. Generally speaking, if both chemotherapy and tamoxifen is appropriate, a woman will receive chemotherapy and then tamoxifen (these are generally not started at the exact same time).

Are there other hormonal therapy medications that can prevent breast cancer?

Other drugs are also available for use in postmenopausal patients with advanced breast cancer. Anastrozole (Arimidex®) and letrozole (Femara®) are among a different class of drugs than tamoxifen called aromatase inhibitors (AIs). Aromatase is an enzyme that helps the body produce estrogen in the fat tissue and adrenal glands. While tamoxifen blocks estrogen receptors, AIs block the action of aromatase. Another drug, exemestane (Aromasin®), is similar to the AIs (and is often included in discussion of AI’s) but is an aromatase inactivator. Instead of blocking the aromatase, aromatase inactivators actually destroy the enzyme. Both tamoxifen and AIs are only effective for treating cancers that use hormones to help the tumors grow.

Are there other SERMs that can prevent breast cancer?

Studies have shown that raloxifene, a SERM (selective estrogen receptor modulator) marketed as Evista®, can also reduce one’s risk for breast cancer. It was approved by the FDA for the following very specific indication:

  • For the reduction in risk of invasive breast cancer in postmenopausal women at high risk for invasive breast cancer.

It is important to understand that Evista did NOT receive approval for treatment of invasive breast cancer, reduction of the risk of recurrent breast cancer, or reduction of the risk of noninvasive breast cancer.

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Cancer-related fatigue (extreme tiredness)

1. What is fatigue?
2. What causes cancer-related fatigue?
3. Tips for managing your fatigue
4. Further support

1. What is fatigue?

Fatigue is extreme tiredness and exhaustion. It doesn’t always go away with rest or sleep and may affect you physically and emotionally. It’s a very common side effect of breast cancer and its treatments, and may last for weeks, months or longer after your treatment has finished.

Everyone knows what it feels like to be tired sometimes but if you have cancer-related fatigue you may feel like you have very little energy. You may find it difficult to do simple everyday tasks and it may stop you from doing things you want to do. Everyone’s experience of cancer-related fatigue is different. Know your limits and don’t expect too much of yourself.

It can be difficult to describe fatigue and other people may not always understand how you are feeling. Reading this information may help family and friends understand fatigue more.

2. What causes cancer-related fatigue?

Breast cancer treatment

Most of the treatments used for breast cancer have side effects that can contribute to fatigue.

Surgery

You may feel tired after surgery. This can be due to the stress on your body, any pain after surgery and the time it takes to heal. Having a general anaesthetic can also affect your energy levels. If you had treatment before surgery such as chemotherapy or targeted therapies you may still be feeling tired from this.

Chemotherapy

The side effects of chemotherapy may include a lowered resistance to infection, anaemia (too few red blood cells in the body) and altered eating patterns. These side effects can cause or worsen fatigue.

Radiotherapy

Travelling back and forth to the hospital for radiotherapy can make you feel increasingly tired and the treatment can cause fatigue because of the way it affects your body. This tiredness may start or get worse after radiotherapy has finished.

Hormone (endocrine) therapy and targeted (biological therapies)

Hormone therapy and some targeted (biological) therapies may cause fatigue.

Other medicines

You may need to take other medicines alongside your main treatments, and these can also contribute to fatigue. For example, pain relief, anti-sickness drugs, sleeping tablets and antidepressants may make you feel very tired. Steroids are often used alongside chemotherapy, which can make you feel restless and may disrupt your sleep.

Emotional causes

Many people feel worried and anxious about their diagnosis and treatment. These feelings and emotions can make your fatigue worse. Find out more about managing anxiety and coping with depression.

Sleep disruption

If your sleep is disrupted by side effects, this can make fatigue worse.

Find out more about sleep disruption “

Other causes

If you experience fatigue see your GP, as it may not be related to your cancer or treatment. For example, fatigue can occur due to thyroid problems, heart conditions or diabetes.

3. Tips for managing your fatigue

1. Tell your GP or nurse how you’re feeling. Your fatigue may have a treatable cause, for example anaemia, which can be treated with iron supplements.
2. Try using a fatigue diary. This involves recording your level of fatigue every day from 1 (no fatigue) to 10 (extreme fatigue). This can help you think about how your treatment affects your energy levels so you can plan your day and make the most of the times when you have more energy. If you have finished treatment it can still be useful to keep a record of when you are more or less tired so you can plan any activities, especially those that require more energy.
3. There is strong evidence that regular moderate exercise (such as walking, cycling or swimming) can help reduce fatigue.
4. Plan your day to balance your activities and rest times. Try and get plenty of rest between your daily activities, but limit the number of naps you have. Keep naps to less than half an hour and avoid taking them in the late afternoon, so that you sleep at night.
5. Use relaxation techniques to help you relax and regain energy. There are many good relaxation CDs or apps that can guide you through different techniques.
6. Drink plenty of fluids (6–8 glasses a day) to keep hydrated. Being dehydrated can make you tired.
7. Eating well can help improve your energy levels. Make the most of the times when your appetite is good and try to choose foods that give you energy over a period of time, like nuts and cereals. Sugary foods may give you a quick fix but won’t keep your energy levels up for very long.
8. Try and accept offers of practical help from others where possible, for example help with household chores or getting to appointments. Often people want to help but don’t know what you need, so let them know.
9. There is some evidence that being well supported may help to reduce fatigue. Think about the kind of support that would suit you – for example, you could join a local support group if there’s one in your area, or have some individual counselling.

More tips on managing breast cancer-related fatigue “

Macmillan Cancer Support publishes an information booklet called Coping with fatigue, which you may find useful. Order it free from Macmillan’s website or call 0808 808 00 00.

4. Further support

Fatigue can be overwhelming and frustrating. Many people who experience fatigue find that others don’t understand how different it is to normal tiredness and the impact it can have.

If fatigue is having a big impact on your daily life, you don’t have to cope with this alone. You can join our online Forum and talk to people who are in the same situation – they may be able to offer tips and support. You can also call us free on 0808 800 6000 to talk through your concerns.

You might find it helpful to download BECCA, our free app for people with breast cancer. BECCA provides strategies and tips to help you move forward after breast cancer treatment.

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