Dealing with the Side Effects of Sarcoma Treatments
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An ESUN Article

MiMi Olsson, Advocate
Mary Sorens, Survivor

The side effects of sarcoma treatments can be the cause of much concern and distress for sarcoma patients, their families and friends.

There are three common causes of the side effects experienced by sarcoma patients: chemotherapy, radiation and surgery. While many of these side effects are temporary and go away when treatment ends, some side effects may be long-term or may appear long after treatment has ended (late effects).

Sarcoma treatments have their own particular type of side effects. Sarcoma surgeries often include limb salvage or amputation. These surgeries can cause patients to have difficulty with body image because of scarring, prosthetics and surgical limitations. Patients who are aware of the rarity of their condition often feel alone and isolated.

Common temporary side effects experienced by sarcoma patients who undergo surgery combined with radiation and/or chemotherapy include nausea, vomiting, mouth sores, hair loss, diarrhea, constipation, fatigue and pain. Usually these symptoms disappear after treatment is completed.

There are some patients who experience none of these side effects and others who seem to deal with many of them. Preparation and understanding can help you deal with your particular side effects as they arise.

Common Temporary Side Effects

Mucositis (mouth sores)

General tips: Keep mouth and lips moist and clean. Use a salt or baking soda rinse three or four times a day. If sores appear, notify your oncology nurse or doctor immediately for a prescribed anti-fungal or anti-bacterial rinse. The following treatments have been used by sarcoma patients and may be available through your physician or pharmacist:

It might help to avoid the following foods:

Some patients report being able to eat the following foods even when mouth sores make other eating difficult:

Other helpful tips:

There are currently a few open clinical trials for mucositis.

Nausea/vomiting

General tips: Avoid strong odors, eat small amounts of dry food (toast/crackers), and drink liquids throughout the day. Use glass containers, and stay away from the cooking area, because cooking smells may irritate nausea. Try to eat before you get very hungry.

If nausea becomes vomiting, notify your oncology nurse or doctor for prescribed anti-nausea drugs. Sometimes the first medicine that you try does not help or does not help enough to prevent distress. There are several kinds of medicine that may work to stop or prevent nausea, so continue to report any distress to your medical team.

For additional information, consult the Nausea Page on GIST Support Wiki.

Hair loss

Hair loss can be sudden or slow. Getting a very short hair cut before therapy can reduce anxiety. Wigs, scarves, and scarves with hair attached are available. Some patients have used and found some relief from the following approaches:

Diarrhea

General tips: Drink plenty of clear fluids. Avoid greasy fried foods, raw vegetables and fruits, gas forming foods and carbonated beverages.  Metamucil or Benefiber can be mixed with half the recommended amount of fluid, to bulk up the stool. Use over the counter diarrhea medicines and keep anus area clean and dry. After the anus is clean and dry, you can apply a skin barrier and to protect the area.  If diarrhea is uncontrolled for more than 24 hours, notify your oncology nurse or doctor.

For additional information, consult the Diarrhea Page on GIST Support Wiki.

Constipation

General tips: Drink at least 8 glasses of water or clear liquids a day. Suck on ice chips, and eat fruits (thoroughly washed), and fiber. Get whatever exercise is possible. Stool softeners may be helpful. If you experience pain, inability to pass gas, fever or vomiting with constipation call your oncology nurse or doctor right away. 

Fatigue

General tips: Fatigue can come on quickly and is usually not due to exertion or loss of sleep. Try to reduce work time and daily chores, plan for periodic breaks, avoid standing or sitting for long periods, and exercise. Extreme fatigue should be reported to your nurse or doctor, because it can be related to low white blood cell counts or low hemoglobin levels (anemia). Occasionally, a patient might need medication or a blood transfusion to improve blood counts and reduce fatigue.

Pain

General tips: Try to identify what is causing your pain: nerve pain, muscle pain, joint pain or bone pain. Limit exercise that intensifies pain, and wear comfortable clothing and shoes. Pace yourself! Keep a diary of pain episodes and learn when pain is most intense. Notify your oncology nurse or doctor when pain becomes intense, or if swelling and redness occur. Pain diaries and medication schedules are helpful in assessing pain.

For additional information, consult:

Additional Side Effects

Anthracycline-induced Cardiomyopathy

Heart problems related to certain chemotherapy agents can be both acute and/or chronic.  The heart muscle itself is weakened due to a class of chemotherapy drugs known as anthracyclines. The most frequently used anthracycline in sarcoma patients is Doxorubicin (or Adriamycin®).  Most often, the damage is sub-clinical and does not become apparent until many years following the completion of anthracycline therapy.  It is considered permanent, progressive and incurable. 

There are many vulnerable populations including: children at the age of 5 and under who receive anthracyclines, patients of any age receiving greater than 300mg/m2, and patients receiving anthracyclines along with radiation to the chest/mediastinal area.  This heart condition is usually discovered via echocardiograms and MUGA scans, which are recommended as follow up for the above mentioned patient populations.  Some problems appear in ECG’s, as well.  The cardiomyopathy is usually known as "dilated," meaning the left ventricle enlarges, and it dilates to try to compensate for the weakened state of the heart muscle, needing to meet the demands of the body.  Some patients may experience arrhythmias. 

The treatment for anthracycline-induced cardiomyopathy can include ACE inhibitors, which are meant to lessen the workload on the heart. The help that ACE inhibitors offer, however, is considered transitory in nature, and is not intended to "cure," but merely delay heart failure in these patients. Other patients are given diuretics in order to counteract the excess fluid build-up around the heart. Cardiomyopathy can lead to congestive heart failure. There is no cure for cardiomyopathy, and heart transplantation may eventually be the only successful treatment.

For additional information, consult:

Chemo Brain

"Chemo brain" is a term that describes cognitive impairment caused by chemotherapy with symptoms similar to Alzheimer’s disease. Patients can turn to a number of nonpharmacological approaches to manage chemo brain. Options include exercise, behavioral interventions such as relaxation therapy, and compensatory strategies such as making to-do lists. Research is ongoing into the causes of chemo brain, how to prevent it and how to repair it.

For additional information, consult:

Edema

Edema is swelling that is caused by fluid trapped in the feet, ankles, and legs. Other parts of the body, such as the face and hands, can also be affected. Compression garments such as sleeves or stockings will help.

Infertility

Cancer treatments may cause temporary or permanent infertility in both men and women. It is important to talk to your oncologist about infertility and what it means to you, preferably before treatment begins.

For additional information, consult:

Lymphedema

Lymphedema is an accumulation of lymphatic fluid in tissue that causes swelling, in arms and/or legs, and occasionally in other parts of the body. Left untreated it causes reduction in oxygen availability in the transport system and interferes with wound healing. If lymphedema is caused by an infection, antibiotics will first need to be prescribed. Depending on severity of lymphedemas not caused by an infection, the recommended treatment plan is usually determined using an approach based on the Complex Decongestive Therapy (CDT) methods which consist of: a) manual lymphatic drainage; b) bandaging; c) proper skin care & diet; d) compression garments (sleeves, stockings, etc.)

For additional information, consult The National Lymphedema Network.

Neuropathy

Some chemotherapies can do nerve damage, and radiation can inflame nerves.  After the chemo/radiation is stopped, the numbness and pain can persist.  There are prescription medications such as Lyrica and Neurontin to help with this. Also, biofeedback, light physical therapy and TENS units may help. 

For additional information, consult: What is peripheral neuropathy and how is it related to chemotherapy? from ChemoCare

Side Effects Related to Specific Procedures

Limb Salvage Surgery

The side effects from limb salvage vary greatly, and can depend on the age of the patient, the location of the surgery, and the extent of the surgery. The patient's mobility may be limited for days, weeks or months after surgery. Many patients benefit from physical therapy, which can continue for months after initial healing. Some patients heal well with minor physical limitations, while other patients deal with more severe physical limitations and chronic pain.

  1. Skin grafts: These grafts may be used to cover the surgical bed. The surgeon uses skin from another part of the body, such as the thigh. Seeing the extent of the damage from the skin graft can be quite disconcerting to the patient and caregiver. The actual graft site will be covered by xeroform or another type of bandage. There may be bleeding and of lymph fluid thru the bandage. Some find the most painful area to be the donor site.
  2. Free Flap: This is a muscle that has been taken from an area in the body and moved to the surgical bed to help cover the bones, or other tissue in the sarcoma removal surgical bed. The surgeon completes the tumor removal and then removes the muscle that will become the free flap. The usual sites for the donor muscle come from the thigh, abdomen or shoulder blade. Some patients have permanent swelling of the foot and ankle as a result of damaged or removed lymph channels in the leg.

To learn more about the psychological effects of surgery, read "Disfigurement, Perceived or Real."

Pelvic Tumor Surgery

Side effects can be age-related and can be dependent upon the extent of surgery.  These side effects can include decreased mobility, gait abnormalities, chronic pain, pain upon exercise, leg length discrepancies (or apparent length discrepancy), scoliosis due to imbalanced pelvis and removal of surrounding muscles.  Other potential side effects include deep infection, which can result in removal of a bone graft and other complications.  After surgery for a pelvic tumor, the patient is usually to remain non-weight bearing for several months.  Following the period of immobility and healing, the patient usually has to undergo extensive (long-term) physical therapy to "relearn" how to balance, to walk, etc.

Radiation Therapy
  1. Burns or redness: Depending on the area that the radiation is targeting, the area can become red and tender, or if a bolus is used to target the subcutaneous regions, you will burn and blister. The doctor may advise that you keep this area out of the sun for at least a year. While you are undergoing treatment, use radiation moisturizing creams that the radiation nurses or doctor will provide. Do not wear tight clothing in the area that is being radiated. There are special bandages to put over the blisters to make you more comfortable. You may continue to burn for about a week following your last treatment. 
  2. Fatigue: This fatigue is usually similar to fatigue related to chemotherapy. It is fatigue that does not get better with rest. Radiation can cause fatigue in two ways. If a large part of bone is in the radiation field, it will lower the blood count and make you fatigued. The other way it causes fatigue is that it affects the immune system. Your body knows it is being burned and mobilizes to help you heal. The fatigue from radiation can last 3-4 months after treatment ends. Try to take periodic rest periods throughout the day if possible.
  3. Protein loss: If you have oozing blisters, the fluid that you are losing contains a lot of protein. For this reason, be sure to eat protein at every meal, as this can help with healing. 
 Amputation
  1. Phantom pain: This pain is like an electrical shock. The pain may be frequent and can make a limb jump. Medications, such as Neurontin or Lyrica, can be helpful. Make sure that you are fully hydrated and consuming potassium-rich food. Some patients benefit from stump massage with peppermint lotion or menthol rub. Sometimes heat or cold can help as well (talk to your physician before applying hot or cold packs). 
  2. Phantom sensation: Some patients can still feel a limb that has been removed. It can itch, tingle or smart.
  3. Dealing with a prosthesis: After healing, most patients see a prosthetic specialist to be fitted with a preparatory limb and then the final definitive limb. After healing, the limb will be swollen and shrinkers will be used to shrink the limb down so that it can be fitted. The skin of the stump needs to be well taken care of, because any skin break-down means you can’t wear the leg until it is healed. A below the knee amputation requires 50% more energy to walk and an above the knee amputee requires 150% more energy to walk. This can make walking very difficult during or after chemotherapy.
Oxygen Therapy
Acknowledgements

From Mimi - Online groups like The Liddy Shriver Sarcoma Initiative and the group support found in ACOR provide first-hand anecdotal information. "Been there – Done that" is the message from our contributors, and I would like to thank them. Specific acknowledgements to patients, parents, caregivers, survivors, family, friends: S. Andresen, S. Coulson, M. Fuentes, M. Gorman, M. Hyman, J. Mollica, E. Munroz, J. Tessier, B. Tunstall, M. Weigand, J. Weir.

From Mary - Members and leaders of the Adult Bone Cancer Survivors support group graciously contributed ideas for this article.

V5N6 ESUN Copyright © 2008 Liddy Shriver Sarcoma Initiative.