Smart Alacc Care Plan

Chemotherapy given into the eye can be successful in saving the eye and a survivor's vision. Studies have not found any long term side effects with this treatment, but there is not enough known to say for sure. Report any changes in vision to your provider.

Peripheral neuropathy is caused by irritation or damage to nerves, resulting in feelings of numbness, “pins and needles,” tingling, burning, or a generalized weakness/heaviness of the limbs. This toxicity can cause difficulties with fine motor skills such as buttoning a shirt, sensation of hot or cold (causing a safety hazard), or difficulty walking. In many patients, this toxicity resolves within weeks to months after completing therapy or stopping the drug that caused the problem. Unfortunately, for others, the problem becomes a chronic one, requiring physical, occupational and medical therapy as well as adaptive changes to ensure safety.

Pain management is best achieved with medications that are not typically thought of as pain medications. These include tricyclic antidepressants, gabapentin and pregabalin. If the pain is not well managed, referral to a pain specialist or physical/occupational therapist may be helpful.

This side effect does not typically develop as a late effect, so if you develop symptoms suggestive of neuropathy months to years after therapy, other causes should be investigated.

Cisplatin, carboplatin and ifosfamide can cause damage to kidney function. This is more common in childhood cancer survivors treated under the age of 5 and the risk in adult survivors is not well understood. Risk is increased if the kidneys were in the field of radiation therapy. Kidney damage may present with elevated blood pressure or abnormalities in electrolytes (blood test). Survivors who develop high blood pressure or electrolyte abnormalities should be referred to a kidney specialist for consultation.

Ototoxicity can present as hearing loss, tinnitus (ringing in the ears) or vertigo (sensation of spinning or loss of balance). This is most commonly seen in survivors treated with cisplatin or carboplatin (in high doses) as young children and those who received these medications in combination with radiation therapy to the head/neck area. Hearing loss may be seen in as many as 26% of adult survivors of testicular cancer treated with cisplatin. This finding may translate to survivors of other cancers treated with cisplatin.

Some hearing loss may go unnoticed because it affects frequencies higher than speech. Survivors should report any hearing difficulties or other signs of ototoxicity (ear problems). You should have an audiogram or consult with an audiologist if you develop any hearing or ear problems.

Survivors who received cisplatin and/or carboplatin may develop elevated cholesterol at earlier than expected ages. You should have fasting lipids checked with a blood test after completion of cancer therapy and annually thereafter.

Osteoporosis is a decrease in bone density (thinning of the bones) that can lead to fractures (broken bones). Long term use of corticosteroids (dexamethasone or prednisone, > 5mg per day for more than 2 months), receiving certain chemotherapy medications, and radiation to weight bearing bones (spine, hips, legs) all increase the risk of developing osteoporosis.

Women who develop premature menopause, have their ovaries removed before menopause or those who take aromatase inhibitors (anastrozole, letrozole and exemestane) are at increased risk for osteoporosis. Men who receive hormone therapy for prostate cancer or undergo removal of testicles are at greater risk. In addition, patients who have undergone gastrectomy (removal of the stomach) are at increased risk to develop osteoporosis.

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 take in 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 multiple times a day. If you take Synthroid (thyroid hormone), separate it from calcium doses by at least 4 hours.
• Take 800-1000 IU of vitamin D3 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.

Raynaud's phenomenon is a condition that causes blood vessels in certain areas of the body to constrict or spasm, causing numbness and cold feeling in that area. This may happen when the area is exposed to cold, or can be triggered by stress. Most people experience the symptoms in their hands/fingers or feet/toes, but it can involve the nose, earlobes, lips or cheeks as well. Spasm and constriction of the blood vessels leads to decreased blood flow to that area, resulting in a lack of oxygen, causing tissues to appear pale or blue in color. Once the attack subsides, the tissues may appear red from the rush of blood back into them.

Survivors who have received vinca alkaloid chemotherapies (vincristine, vinblastine or vinorelbine) are at highest risk for developing this phenomenon. Raynaud's has been seen in testicular cancer survivors and is thought to be related to the use of bleomycin, cisplatin or vinblastine in those people. Symptoms may begin during, or months after treatments are completed and while some survivors have a gradual resolution of symptoms, others do not. In some cases, Raynaud's is seen along with hypertension or erectile dysfunction because of their similar pathology.

If you have this condition, you should attempt to prevent attacks by avoiding exposing the affected area to cold. Nicotine can also constrict blood vessels, so smoking should be avoided. In addition, some medications can cause constriction of the blood vessels, including pseudoephedrine, birth control pills and certain heart and blood pressure medications. Talk to your healthcare provider if you are taking any of these medications and are experiencing Raynaud's phenomenon. Medications that dilate blood vessels may be used to control symptoms in severe cases, although these have their own side effects. You should also have your blood pressure checked every year.

Many survivors who have previously received or are currently undergoing chemotherapy report experiencing cognitive changes. These changes include difficulty with short term memory, multi-tasking, new learning, reading comprehension, working with numbers and a decrease in concentration ability. Medications that may cause learning differences include intrathecal methotrexate and any radiation to the brain. 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.

It is important to remember that some very treatable problems can result in cognitive difficulties, such as thyroid dysfunction, depression and anxiety, so it is important to check for these problems and treat them, if present. 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 medication. Survivors who may be depressed or are experiencing anxiety would benefit from consulting with a psychiatrist or psychologist experienced in working with cancer patients or survivors.

Some medications are being studied as potential treatments for cognitive changes, but there is not yet enough data 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. Neurocognitive testing and cognitive rehabilitation may be of use to survivors. Cognitive rehabilitation programs are structured programs utilizing 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.

Most chemotherapy medications have been studied extensively, and their side effect risks are well-understood. Research is continuing, however, and new information may become available. You should periodically talk to your healthcare team about new information that becomes available for cancer survivors.

In addition, there have been many new therapies in recent years, including many 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.

You can revisit Smart ALACC to create an updated plan periodically and visit the Children's Oncology Group Long Term Follow-Up website to learn about any new 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.

Certain chemotherapy medications can cause damage to the blood cells in the bone marrow. In rare cases, this damage can cause leukemia or myelodysplasia (MDS) to develop years after therapy has been completed. Both diseases cause an abnormal production of poorly functioning blood cells, making it difficult for the body to fight infection, carry oxygen to the tissues and prevent bleeding. Because these conditions develop as a result of chemotherapy or radiation exposure, they are often more difficult to treat than typical leukemia or MDS. Leukemia and MDS caused by chemotherapy or radiation therapy typically occurs between 4-10 years after treatment, but can occur even later. One exception is those caused by etoposide (VP-16) or teniposide (two types of chemotherapy), which generally occur within 1-3 years after therapy. Secondary lymphomas have also been seen in Hodgkin's disease survivors who received the MOPP (nitrogen mustard, vincristine, procarbazine, and prednisone) chemotherapy regimen. The medication bendamustine has been linked to secondary lung cancers.

Fertility (or the ability to have children) after cancer therapy is a very complex topic. It is related to the doses and types of medications received, radiation and/or surgery that may have affected reproductive organs, and the age at time of treatment. With all of these variables, it is sometimes difficult to predict a survivor's reproductive health. Regardless of treatments received, all women should use protection if sexually active if pregnancy is not desired, and to protect against sexually transmitted infections. Survivors who wish to assess their fertility should consider seeing a reproductive specialist who has experience working with cancer survivors. Specialists may be able to perform tests to help evaluate fertility.

Chemotherapy agents that are most strongly tied to infertility are alkylating agents (including cyclophosphamide and ifosfamide), and risks are higher with higher doses of these medications. High dose chemotherapy, used in preparation for stem cell transplant, typically results in acute ovarian failure and, in turn, infertility. Radiation to the abdomen, pelvis, brain, or full body (TBI) can also impact fertility.

Even if you resume normal periods after cancer therapy you should be aware that you might still experience earlier than expected menopause, which can affect family planning. When pregnancy does occur, survivors may need to be followed by a "high-risk" obstetrician depending on what treatments they have received, and planning for this may be important.

If you are a healthcare provider reviewing the plan with your patient and would like to document the alkylator chemotherapy dose that your patient received, you may do so here:

Alkylator Dose (specify drug and dose) __________________________________

For survivors creating the plan without a healthcare provider, please discuss these factors with your team to get the best understanding of your individual risk.