OncoLife Care Plan

There is a small risk of developing cataracts after treatment with:

• High doses of busulfan (used in transplant).
• Long term use of corticosteroids for more than a year (such as dexamethasone and prednisone).
• Tamoxifen and anastrozole.
• Radiation therapy involving the eye (including total body irradiation).

You should have an eye exam performed by an ophthalmologist every few years. Report any symptoms of cataracts, which include: blurry vision, light sensitivity, poor night vision, double vision in one eye, seeing halos around objects, needing brighter light to read or fading or yellowing of colors.

The risk for bladder or urinary tract problems is highest for survivors who received ifosfamide, high doses of cyclophosphamide (doses > 3g/m²) and/or radiation to the abdomen. These problems can include:

• Bleeding inside the bladder, which is called hemorrhagic cystitis.
• Scar tissue forming in the bladder, which can cause your bladder to be able to hold less urine or have trouble emptying.

These problems can cause difficulty urinating, the need to go often or urgently, pain when urinating or seeing blood in your urine. Survivors at risk should report these symptoms to their healthcare provider right away. Alcohol use and smoking can make bladder problems worse, so they should be avoided.

In rare cases, cyclophosphamide can lead to bladder cancer. This risk is higher if you also received radiation therapy to the abdomen. Symptoms of bladder cancer include blood in the urine, urinary frequency and urgency, urinating at night and incontinence. You should report any of these to your healthcare provider. Alcohol use and smoking can also cause bladder cancer, so they should be avoided.

The group of chemotherapy medicines called anthracyclines can cause heart problems, including cardiomyopathy (weakening of the heart muscle), arrhythmias (rhythm abnormalities) and left ventricle dysfunction (causing "heart failure"). These heart problems can develop during treatment, soon after or many years later. For the majority of people who develop heart problems, it happens in the first year after treatment.

Things that can increase your risk include:

• Receiving a higher total dose (over your lifetime) of these medicines. However, even low doses can lead to issues, so it is important to be aware of the possibility.
• Receiving other cancer therapies that can affect the heart or radiation therapy where the heart is in the treatment field.
• Having other health problems that can affect the heart, such as high blood pressure, diabetes, high cholesterol or cardiovascular disease.
• You should strive for a healthy lifestyle. Smoking, drug use, being overweight, not getting much exercise and an unhealthy diet can all increase the risk of heart disease.

Heart problems caused by these treatments can cause you to have:

• Shortness of breath. This can occur with activity or at rest.
• Difficulty breathing when lying down (called orthopnea)
• Chest pain or palpitations (feeling like your heart is beating hard or fast).
• Dizziness or lightheadedness.
• Swelling in your arms/hands or legs/feet (called edema).
• In younger survivors (under age 25), nausea and vomiting may be a sign of a heart problem.

You should see your healthcare provider for a physical several times during the first year after treatment and at least annually thereafter. Report any symptoms you are having. You should have an echocardiogram within a year of finishing treatment and your provider should monitor you for heart issues for the rest of your life. Your care team may also order tests to evaluate your heart function if you are having symptoms of heart problems. If any abnormalities are detected, you should see a cardiologist with experience working with cancer survivors for further evaluation.

Osteoporosis is a decrease in bone density (thinning of the bones) that can lead to fractures (broken bones). While the risk for osteoporosis appears on the medications tab, the risk can be related to a number of things. Risk is increased for:

• People who take corticosteroids for more than 2 months (dexamethasone or prednisone, more than 5mg per day).
• People who receive radiation to weight bearing bones (spine, hips, legs).
• Women who develop premature menopause or have their ovaries removed before menopause.
• Women who take aromatase inhibitors (anastrozole, letrozole and exemestane).
• Pre-menopausal women who take tamoxifen.
• Men who receive hormone therapy for prostate cancer or have a testicle(s) removed (orchiectomy).
• People who have had a gastrectomy (removal of the stomach).
• Several types of chemotherapy have been found to contribute to bone loss, including cytoxan, cisplatin, carboplatin, ifosfamide, doxorubicin, methotrexate, and possibly imatinib.
• General factors that increase the risk of osteoporosis include: being over the age of 50, smoking, drinking too much alcohol, not exercising and some chronic health conditions.

There are things you can do to lower your risk of a fracture and strengthen your bones:

• Get 1000-1200mg a day of calcium.
  • It is best to get calcium in a balanced diet, including 4-8 servings of calcium rich foods a day. Examples of calcium rich foods are low fat milk, yogurt, cheese, green leafy vegetables, nuts, seeds, beans, legumes and calcium fortified foods and juices.
  • A dietician can provide more guidance in choosing calcium rich foods. A good resource is www.myplate.gov.
  • If you cannot get the recommended amount of calcium in foods, take calcium citrate supplements. Your body does not absorb calcium supplements well, so spread the dose out by taking 1 tablet several times a day, instead of all at once. If you take Synthroid / levothyroxine (thyroid hormone), separate it from calcium doses by at least 4 hours.
• Take 800-1000 IU of vitamin D-3 daily.
  • Your healthcare provider may check blood levels of vitamin D with the 25-OH Vitamin D blood test.
  • Do not take more than 2000 IU of vitamin D3 a day, unless directed by your healthcare provider.
• Weight bearing exercise and strength training can improve your bone strength.
  • Before you start an exercise program, check first with your care team to determine if it is safe.
  • Start with what is comfortable for you and work up to the following recommendations:
  • Get 30-40 minutes of weight bearing exercise 3 times a week. Weight bearing exercises are those in which your feet or legs bear your body’s weight while the bones and muscles work against gravity. Examples include: walking, jogging, Tai Chi, yoga and dancing.
  • Strength training 2-3 times per week, with a day of rest in between each session. Complete 8-12 repetitions of the exercises below, and repeat them two times (2 sets). Choose a weight where the tenth repetition is hard for you to complete and you can’t complete an 11^th time. Now remove 1-5 pounds from that "maximum weight," and use that as your training weight. When you can easily do 12 repetitions, try to increase the weight by 3-5lbs.
  • Exercises include: leg extensions, calf raises, leg curls, chest press, latissimus pulldown, overhead press, row machine and curl ups.
  • Your provider can refer you to a physical therapist or a physical medicine and rehabilitation physician for more guidance regarding bone-strengthening exercises.
• Decrease or stop caffeine intake and limit alcohol intake, as these can weaken bones.
• Quit smoking. Learn more about how to get started on OncoLink.
• Your provider may order a DEXA scan, which is a test used to measure the thickness (density) of your bones.

Some cancer medicines can cause your skin or nails to darken all over, or in spots. The change in skin color tends to fade over time, but can become permanent. Many people will have very dry or scaly skin while on cancer treatments. Your nails may become weak and brittle. Taking care of your skin and nails can help them recover. Protect your skin from the sun with SPF, protective clothing and avoid the sun during peak hours (10am-3pm).

• Use a mild soap and water for washing.
• Use a hydrating cream or lotion for dry or scaly skin.
• Keep your nails trimmed to avoid them ripping. Do not use fake nails or gel manicures as these can further damage your nails.
• Protect your skin from the sun.

Many survivors who have previously received or are currently undergoing chemotherapy or other cancer treatments report experiencing cognitive changes, often referred to as "chemo-brain." This can include difficulty with short term memory, multi-tasking, new learning, reading comprehension, working with numbers and trouble concentrating. Research has found that depression or anxiety over the diagnosis and treatment of cancer may contribute to or worsen these issues. Whether related to the stress of treatment or the treatment itself, cognitive changes after treatment are real. We do not know whether only certain medications are responsible. It does appear that the more treatment a person gets, the more likely they are to have issues. Studies have found that cognitive ability can improve over time in some survivors, but deficits are still present in many long term survivors, years after treatment.

Some medications are being studied as potential treatments, but there is not yet enough evidence to support their use. Some of the agents being studied include: methylphenidate (Ritalin), modafinil (a medication approved to treat narcolepsy), various antidepressants, herbal therapies, such as ginkgo biloba, ginseng and certain amino acids. Cognitive rehabilitation programs use exercise, tasks that use memory and puzzles to "rehabilitate" one's mind. These programs are typically used for people with brain injuries, but therapists have tailored programs for cancer survivors. Bookstores and websites offer memory training, which may be helpful to survivors. Puzzles using numbers, like Sudoku, may help "exercise" your brain. Fatigue can enhance cognitive problems, so avoiding fatigue by getting enough sleep, incorporating exercise into your life and eating a healthy diet may be helpful.

It is important to remember that some very treatable problems can cause cognitive issues, such as thyroid problems, depression and anxiety. If you are experiencing cognitive problems, it is important to be checked for these issues. Hypothyroidism (low thyroid hormone levels) is a common issue for survivors and can make you feel "fuzzy" or "out of it." This is easily treatable with supplemental thyroid hormone. Survivors who are depressed or experiencing anxiety can benefit from working with a therapist experienced in working with cancer patients or survivors.

Fertility after cancer therapy is a very complex topic. Whether or not a woman will remain fertile after treatment is related to:

• The doses and types of medications you received (certain medications, higher doses or longer treatments are more likely to cause infertility).
• If you also got radiation to the abdomen, pelvis or brain.
• Your age at the time of treatment.
• The number of oocytes (eggs) present when therapy started. This number drops as women age and as the number of eggs drops, it becomes more difficult to get pregnant.
• Treatment that removes both ovaries or the uterus obviously has a major effect on fertility.

It is very difficult to predict if a woman will remain fertile after treatment. If a woman’s periods return after treatment, she is still at risk of going into menopause earlier than her peers. It is not possible to predict when that will happen. For all these reasons, it can be very helpful for a survivor who wants to conceive to be seen by a fertility specialist who has worked with cancer survivors. This specialty is often called "oncofertility." Testing can be done to evaluate fertility, including certain hormone levels and a follicle count (a measure of a woman’s remaining egg supply).

LiveSTRONG and The OncoFertility Consortium websites can help you find a fertility specialist. LiveSTRONG offers financial assistance to cancer survivors for fertility care. The OncoFertility Consortium and The National Infertility Association’s website, Resolve, offer information on fertility treatments and testing, adoption and deciding to not have children. Resolve also offers information on individual state laws about fertility coverage by insurers. If you underwent fertility preservation prior to treatment, you will need to work with a fertility specialist to get pregnant using your stored eggs or embryos.

Some experts suggest that women who have had cancer treatment may be at higher risk for complications during pregnancy and should consider seeing a high risk obstetrician. This is particularly important if you received radiation to the abdomen or pelvis area, had surgery involving female reproductive organs, or if you received chemotherapy that can cause heart damage.

Certain treatments are more strongly tied to infertility, including:

• Certain anti-cancer medications: alkylating agents (Cytoxan, busulfan, melphalan, BCNU), procarbazine, bevacizumab, cisplatin and some FOLFOX regimens.
• We do not know how many of the newer treatments will affect long term fertility.
• Total body irradiation and bone marrow transplant are considered high risk for infertility.
• Radiation fields that include a woman’s pelvis or brain can affect fertility.

Women who resume their periods after cancer therapy, should be aware that they could still start menopause earlier than expected, which may be a consideration when planning a family.

Survivors should understand that even if a woman’s periods stop during treatment, she may still be able to get pregnant. For this reason, use of effective birth control during cancer treatment for any premenopausal patient is essential. Accidental pregnancy during cancer treatment can be difficult to cope with, as it may limit the treatments available.

Your OncoLife Care Plan focuses on late effects of therapy, or those that can occur months to years after completing therapy. Given that hormone therapy regimens can last anywhere from 5 to 10 years, we felt it was important to include some information about the side effects you may experience while taking these medicines.

Tamoxifen commonly causes hot flashes and other symptoms of menopause, such as night sweats, vaginal dryness and forgetfulness. Some helpful tips include:

• Avoiding triggers such as warm rooms, spicy, caffeinated or alcohol containing foods or beverages can help reduce hot flashes.
• Drink plenty of fluids, wear breathable clothing in layers and exercise regularly.
• For some women, certain antidepressant medications can provide relief of hot flashes.
• Vaginal dryness can make intercourse uncomfortable. Vaginal moisturizers (Replens) used several times a week and lubricants during sexual activity can be helpful. If these do not help, talk with your provider as you may be able to use a low dose vaginal estrogen product.

Two rare but serious complications of tamoxifen are endometrial cancer and blood clots. While taking tamoxifen, your periods may become irregular or stop. You should report any changes in your periods, vaginal bleeding, pelvic pressure/pain, or any vaginal discharge to your oncology provider for evaluation. If concerning, an endometrial biopsy may be done to look for cancer in the endometrium.

Blood clots are a rare side effect. They most often occur in the calf (lower leg) or lung. Signs of a blood clot in the leg can include: leg pain, warmth, swelling of one leg more than the other. Signs of a blood clot in the lung can include: fever, shortness of breath that comes on you very quickly, racing heart, chest pain (that tends to be worse when you take a deep breath). Any of these symptoms should be reported to your provider immediately or go to the nearest emergency room.

Women of any age may have sexuality concerns after cancer treatment. Do not hesitate to talk with your oncology team about these common concerns. For many women, cancer treatment can cause the sudden onset of menopause. This sudden change in hormone levels leads to physical changes such as thinning and inflammation of the vaginal walls, loss of tissue elasticity, decreased vaginal lubrication, and vaginal dryness causing painful intercourse. In addition, women may experience hot flashes, mood swings, fatigue, and irritability. Women of any age may notice a reduced desire for sex and difficulty achieving orgasm.

Decreased lubrication leading to painful intercourse is a common concern for survivors. Regular use of vaginal moisturizers (Replens), using lubricants during sexual activity and/or vaginal estrogen therapy (suppository or ring used in the vagina). Women who have had hormone-dependent cancer should discuss current research on using these therapies with their healthcare team. Surgery and/or radiation therapy can result in scarring that may cause discomfort during intercourse. Open communication about position changes and alternative methods of expressing affection with your partner can help when resuming sexual activity after treatment.

If your sex life has been on hold during treatment and you are looking to rekindle your romance or start a new one, take steps to feel more at ease. Have a "date" with your partner to build the romance. Talk about what feels good and what doesn’t.

Concerns about changes in your body, cancer recurrence, the stress and anxiety caused by cancer therapy, or changes in your relationship with your partner can all affect how you feel about your sexuality. It is important to understand that sexual activity cannot cause cancer to recur, nor can you spread cancer to another person through sexual activity. If you find that your feelings are significantly impacting your sexuality, you should talk with your healthcare team about finding a therapist experienced in helping cancer survivors.

Of utmost importance in addressing sexual concerns is communication, both between partners and between survivors and their healthcare team. Understand that these concerns are common and communication is the first step to finding the right solutions. Visit OncoLink's section on sexuality for more information.

A secondary cancer is one that develops as a result of cancer treatment for another cancer. This is quite rare, but you should be aware of the risk. In most cases, a secondary cancer related to chemotherapy is a blood cancer (leukemia, lymphoma).

• Certain chemotherapy medications can cause damage to the blood cells in the bone marrow. In rare cases, this damage can lead to leukemia or myelodysplasia (MDS) years after treatment.
• Blood cancer caused by chemotherapy or radiation therapy typically occurs 4-10 years after treatment but can occur even later.
• One exception is those cancers caused by etoposide (VP-16) or teniposide (two types of chemotherapy), which tend to occur within 1-3 years after therapy.
• The medication bendamustine has also been associated with secondary blood cancers. This medication has also been associated with secondary lung cancers.

There are many medications that we do not know the long term effects they may cause. Most cancers are treated with a combination of medicines. This can make it difficult to be certain which medication is the cause of a long term effect. Research is continuing and new information may become available. You should periodically talk to your healthcare team about new information or look for new information in reliable journals and/or internet sites.

In addition, there have been many new therapies developed in the last ten years, including many of the biologic therapies, monoclonal antibodies and targeted therapies. We may not know the long term effects of these medications for many years. As a survivor, you should be an active participant in your healthcare and keep an ear out for new information.