Because the post-transplant experience is different for everyone, we get many types of questions - and we often hear similar questions from patients in similar situations. Below are the most frequently asked types of questions from patients and their family members. New questions and answers will be posted on a regular basis, so check back if you have a question that isn't addressed here.
Q: Can having a bone marrow or stem cell transplant affect my teeth and oral health?
A: Yes. Total body radiation and high dose chemotherapy given before a transplant, or previous radiation to the head and neck for cancer treatment, can affect the mouth by decreasing the production of saliva. Chronic graft-vs.-host disease of the mouth can also damage salivary glands and cause mouth dryness. Because saliva helps protect the teeth from decay, transplant patients are at greater risk for tooth decay. Decreased saliva secretion can combine with reduced immunity from the transplant, GVHD of the mouth and immunosuppressive medications to increase the risks of oral infections and oral cancer. Infection in the mouth is most often caused by yeast.
Q: What long-term dental guidelines do I need to follow after transplant?
A: All transplant patients should be diligent about daily brushing and flossing. Patients who suffer from dry mouth should follow a program of daily brush-on prescription-strength fluoride gel or other specific treatments to reduce the risk of tooth decay. Routine dental examinations, including X-rays as needed, are important to identify and assess any problems.
Decay associated with mouth dryness can be very aggressive and can cause severe damage. This problem can be reduced or prevented by proper brushing and flossing and daily treatment with prescription-strength fluoride (1.1 percent neutral sodium fluoride). Patients who are taking immunosuppressive medications and patients with chronic GVHD need effective oral care to prevent inflammation of the gums (gingivitis), periodontal disease and other dental infections. These infections can potentially spread to cause systemic problems and can make GVHD worse.
Q: Should I go to the dentist when I'm immunosuppressed?
A: Dental exams and appropriate supportive treatment can be very important after transplant to maintain oral health. Examinations should be carried out during this time in order to prevent and identify potential problems.
Elective or routine dental procedures, even such treatments as dental cleanings, should not be performed for at least the first year after transplant or during treatment with immunosuppressive medications. Dental treatment can potentially increase the risk of infection due to the spread of bacteria into the bloodstream. In addition, bacteria and debris can be inhaled into the lungs during dental drilling or use of ultrasonic tooth cleaning equipment.
If urgent or emergency dental procedures are required during this time, special precautions are needed to prevent infection. These steps include blood tests to assess the risk of infection and bleeding, antibiotics before and after the procedure, and special precautions by your dental team. Also, patients with indwelling central venous catheters (Hickman, etc.) should take antibiotics before dental procedures.
If you have dental insurance, some policies may provide for additional exams or treatment for immunosuppressed patients.
Q: My dentist says the American Heart Association guidelines about who needs to take antibiotics before dental procedures have changed. What should I do?
A: The AHA reviews their guidelines for using antibiotics before dental procedures quite often. The AHA has determined that for most patients with certain types of heart problems, the risk of allergic complications from antibiotics before dental procedures is greater than the benefit. The new guidelines state that only patients with serious specific cardiac conditions at high risk for heart infection (endocarditis) should take antibiotics before dental procedures.
However, the AHA guidelines do not address the risk of infection in patients who are immunosuppressed due to bone marrow or stem cell transplant or systemic immunosuppressive therapy, or in patients who have oral GVHD disease. For these patients, the risk of oral infection, blood infection (bacteremia), certain types of pneumonias, or endocarditis is greater than the risk from allergic reactions against the recommended antibiotics. We continue to advise these patients to take antibiotics before any dental work. If you or your dentist would like further guidance on whether or not you should take antibiotics before dental procedures, we ask that you contact Long-Term Follow-Up.
Q: Is it normal to develop new mouth dryness or pain when I return home after my transplant?
A: If you develop mouth pain, sores or dryness after you return home, you should contact your doctor. You could have an easily treatable infection, such as yeast infection in the mouth (thrush) or herpes simplex. If you had an allogeneic transplant from a relative or unrelated donor, you could have developed GVHD of the mouth. Oral GVHD can potentially cause mouth sores and can damage salivary glands. Also, certain medications can cause dry mouth. LTFU can assist you and your doctor or dentist in determining what to do for you. The sooner the problem is diagnosed and treated, the fewer problems you will have.
Q: Are dry eyes a problem after transplant?
A: Dry and painful eyes are one of the more common complaints mentioned by our LTFU patients. It can be a major problem for people after transplant, especially for those with GVHD.
Symptoms of dry eyes include:
Untreated or severe forms of Dry Eye Syndrome can lead to permanent eye damage. If dry eyes are bothering you, go to an ophthalmologist for a complete eye exam including a Schirmer's test and a slit lamp exam.
Q: What can be done about my dry eyes?
A: Things that you can do that may relieve dry eyes include:
Some situations that can make dry eyes worse are hot or dry climates, wind, living at high altitudes, cigarette smoke, dust or pollen and air-conditioning. If dry eyes are bothering you, go to an ophthalmologist for a complete eye exam including a Schirmer's test and a slit lamp exam. The ophthalmologist will work with you to find the best treatment for your situation. Treatments that may be recommended are punctal ligation (plugs in the tear ducts to stop the tears from draining), moisture chamber glasses (glasses or goggles that trap moisture around the eyes), or sunglasses.
Also gaining favor as a treatment for dry eyes is prosthetic replacement of the ocular surface ecosystem (PROSE), a pioneering treatment developed by Boston Foundation for Sight. PROSE uses FDA-approved custom designed and fabricated prosthetic devices to replace or support impaired ocular surface ecosystem functions that protect and enable vision. The space between the cornea and the device is used to hold a soothing pool of artificial tears against the eye.
For more information, visit sites related to dry eye syndrome, dry eyes and dry eye pain. In addition, there are special products available that patients have reported to be useful. The following web sites are provided only as an example of the type of products that patients may find helpful: Panoptx and Tranquileyes and Boston Scleral Lens. The Hutch has no financial interest in the companies or products listed.
Q: Is it normal to continue to feel fatigued even after recovering from a transplant?
A: Yes. Research specific to transplant patients indicates that fatigue is an important quality of life issue and that it persists in many survivors for years after treatment.
Q: What can I do to manage fatigue?
A: Some tips to aid with fatigue management are:
For more information and detailed tips for managing fatigue, see the Cleveland Clinic’s FAQ on Fatigue.
Q: What is graft-vs.-host disease (GVHD)?
A: GVHD results from an immune reaction after a marrow or blood cell transplant. Immune cells in the graft from the donor recognize body tissues in the patient or host as “foreign.” The resulting immune response is similar to the reaction against an infection. GVHD can vary in severity, and different parts of the body can be affected. In severe cases, uncontrolled GVHD can be fatal.
Q: What is the difference between acute and chronic GVHD?
A: Acute and chronic GVHD are caused by different mechanisms within the immune system. For this reason, the two forms of GVHD respond differently to treatment.
Acute GVHD usually begins during the first 100 days after a transplant, although it can begin later. Acute GVHD affects the skin, stomach, intestines and liver.
Chronic GVHD usually begins more than 100 days after a transplant. Chronic GVHD can affect the same organs that are affected by acute GVHD, along with connective tissue in the skin and joints, the mouth, esophagus and lungs, the glands that make saliva, the glands that make tears, and the vagina.
Q: Does GVHD cause permanent damage?
A: Chronic GVHD can cause permanent damage to tissues in the skin, connective tissue, glands and organs. This damage can result in a number of problems such as permanently impaired lung function, permanent stiffening of skin and joints, or obstruction of the esophagus or vagina. When glands are damaged, production of saliva or tears can be seriously impaired, resulting in damage in the mouth and eyes. In addition, the changes of chronic GVHD can increase the risk cancer of the skin and mouth.
Q: Why is it important to carefully follow a chronic GVHD treatment plan?
A: Treatment of GVHD is designed to control the immediate symptoms and prevent long-term damage that can result from chronic GVHD. Doctors carefully determine which medications and dosages are appropriate for each situation. Dosages of these medications are slowly decreased over time in a way that allows the new immune system to adjust at its own pace.
Sometimes it is necessary to increase the doses or to change medications. GVHD can come back if treatment is stopped too soon. Half of the patients with chronic GVHD can complete their treatment within two to four years after starting. In other patients, it takes a longer time to complete the treatment.
Q: In what circumstances would a patient not receive treatment for GVHD?
A: In some cases, the symptoms of chronic GVHD can be controlled by topical treatments such as skin creams, eye drops or swallowed topical medications to treat the stomach and small intestine. The systemic medications used to treat chronic GVHD are powerful and can cause many side effects. These side effects can be avoided if the disease can be controlled without using these medications.
Q: What should I do if I think I am having new symptoms of GVHD?
A: Patients who have new symptoms or signs should contact their doctor if they had a transplant within the past year or if they are still taking medications that suppress the immune system (for example, prednisone, cyclosporine, tacrolimus, mycophenolate mofetil).
Long-Term Follow-Up (LTFU) is available to assist patients and their doctors with any questions about symptoms or treatment related to GVHD.
Patients who are concerned about GVHD but had a transplant more than a year ago or are not taking immunosuppressive medications can call LTFU at 206.667.4415.
Q: What is the risk for developing chronic graft-vs.-host disease (GVHD) after transplant?
A: About 60 percent of patients who receive an allogeneic transplant and are alive at day 100 will develop chronic GVHD.
Q: What would indicate a need for systemic treatment of chronic GVHD?
A: Systemic immunosuppressive treatment with a medication like prednisone is not usually necessary for patients who have mild chronic GVHD. For example, someone with a platelet count greater than 100,000 and mild symptoms in just one site, such as the mouth, would probably not require systemic treatment. Someone with chronic GVHD involving multiple sites such as liver and skin or eyes and genital tract, or someone with chronic GVHD and a platelet count less than 100,000 would require systemic therapy. If symptoms are severe, systemic immunosuppressive treatment may be needed even when only a single site is involved.
Your doctor, can determine if you need systemic treatment. The LTFU is available to help your doctor in making this decision.
Q: What is standard treatment for initial diagnosis of chronic GVHD requiring systemic treatment?
A: Treatment with daily prednisone should begin as soon as possible after diagnosis of chronic GVHD. In general, treatment with cyclosporine or tacrolimus should also be continued if you were taking one of these medications before the onset of chronic GVHD. Treatment should continue at the initial dose of prednisone until there is improvement in the chronic GVHD symptoms. At that point, the doctor will recommend a schedule to slowly decrease or "taper" the dose over time. If there is no improvement after two months of treatment with prednisone, additional immunosuppressive medications may be needed. Additional treatment should begin sooner if chronic GVHD symptoms progress.
Q: What are the side effects associated with the long-term use of prednisone?
A: Long-term treatment with high-dose prednisone is associated with complications. These complications may include avascular necrosis (a degeneration of the bones, often in the hips), glucose intolerance requiring the use of insulin, infections, hypertension (high blood pressure), weight gain, changes in body or face shape ("moon face"), cataracts, osteoporosis (decreased bone density), mood swings, problems with sleep and slowing of growth in children.
Q: Is any new therapy for treatment of chronic GVHD available?
A: Investigators at Fred Hutch have recently opened a new protocol for treatment of newly diagnosed chronic GVHD. This is a multi-center double-blind study involving the addition of mycophenolate mofetil (MMF) or placebo to the standard treatment of prednisone plus cyclosporine or tacrolimus. The objectives of the study are to test the effectiveness of adding MMF and to assess whether the addition of MMF improves quality of life, due to a faster prednisone taper.
Q: How long can I expect to be treated for chronic GVHD?
A: Treatment of chronic GVHD usually lasts about 2.5 years. Some patients require treatment for shorter periods, while other require treatment for more than 5-10 years.
Q: Why is Hepatitis C a problem for some transplant survivors?
A: The Hepatitis C virus is spread primarily through exposure to blood from an infected person. Before the early 1990s, there was no blood test to determine if a blood or marrow donor was carrying the Hepatitis C virus. Routine testing of blood donors could not be performed until July 1992. Because this disease frequently has no symptoms for many years, donors were not aware they had the disease. Often, transplant patients received many blood or platelet transfusions before and during the transplant process from a large number of donors. This exposure increased the chance of contracting Hepatitis C. In addition, transplant patients with Hepatitis C appear to have a much higher risk of serious liver damage. This higher risk may be due to the immunosuppression required during and after the transplant process. This immunosuppression could allow the virus to reproduce quickly and damage the liver at a much faster rate than in someone who is not immunosuppressed.
Q: If I received blood products or a transplant after July 1992, do I need to worry about having Hepatitis C?
A: The chance of contracting Hepatitis C from blood products after routine testing for the virus began is very small (1 in 100,000). Donors are screened both for the presence of the virus and any recent activities that are known risk factors for infection, such as IV drug use. However, Hepatitis C could still be contracted from other blood contact with an infected person, such as an accidental needle stick or sharing anything contaminated with blood, such as shaving razors. Although much less likely, Hepatitis C may also be contracted through sexual contact with an infected person.
Q: What happens to the liver when someone has Hepatitis C?
A: Most people have no symptoms at the beginning of the infection. In 70–85 percent of people, the virus persists after the initial infection. This type of infection is called Chronic Hepatitis C. Many people with Chronic Hepatitis C have no symptoms. However, over a period of many years, the virus may cause liver damage. In some cases, the damage may be mild, while in other cases, the damage may be severe before the patient shows symptoms. If a person has tested positive for Hepatitis C, their doctor should perform regular tests to determine whether liver damage is occurring.
In the general population, up to 70 percent of people with Chronic Hepatitis C may develop liver disease. The most common type of liver damage caused by Hepatitis C is scarring, which may eventually lead to cirrhosis (extensive scarring and interruption of blood flow through the liver). Studies have shown that, in general, about one in five people will develop cirrhosis after 20 years with Chronic Hepatitis C. About one in 50 people who develop cirrhosis will develop a type of liver cancer called hepatocellular carcinoma. The risks of cirrhosis and liver cancer may be higher in transplant patients due to periods of immunosuppression, which may allow the virus to reproduce and cause damage more quickly.
Q: Is Hepatitis C treatable?
A: The standard treatment for Hepatitis C is a combination of two drugs: pegylated interferon and ribavirin. Treatment is recommended to last between 24 and 48 weeks, depending on the specific strain of virus. Treatment may be stopped early if blood tests show it is not effective, or if the patient cannot tolerate the side-effects of treatment. These side effects include flu-like symptoms, low blood counts and fatigue. Approximately 80 percent of patients will have some of these side effects. While 70 percent of patients will show improvement with combined therapy, cure rates are around 40 percent. Not everyone with Chronic Hepatitis C should have treatment. Patients with little or no liver damage may be advised to continue close monitoring until the time that treatment becomes necessary.
Q: If I have Chronic Hepatitis C, what else can I do to avoid liver damage?
A: The most important thing you can do to protect yourself from further liver damage is to avoid all alcoholic beverages. Even moderate drinking in a person with Chronic Hepatitis C can cause serious liver damage and increase the risks of cirrhosis and liver cancer. Talk to your doctor before taking any over-the-counter medications, including vitamins and natural remedies. Common ingredients in over-the-counter medications, such as acetaminophen or Tylenol can be very toxic to the liver if taken in larger doses or with alcohol. Vitamins and minerals that might normally be considered "good for you", such as vitamin A and iron may also harm the liver in a person with Chronic Hepatitis C. Most herbal and natural remedies have not been tested in people with Chronic Hepatitis C; however, a number of herbal supplements are known to be toxic to the liver.
Eating a healthy diet and avoiding exposure to toxic chemicals may also help keep your liver healthy.
Q: What can I do to help remember things?
A: There are a number of small things you can do that will help you cope with memory loss:
Q: What can I do to improve my memory and thinking?
A: Exercise your mind just as you would exercise your body. Studies have shown that fun activities such as playing chess, doing crossword puzzles, playing a musical instrument or learning ballroom dancing can keep your mind sharp. At the very least, mental activity will help you keep your mind working.
Q: Can my diet or activity level affect my memory and thinking?
A: Some studies have shown that diet can affect memory. A diet rich in fruits and vegetables that are high in antioxidants (blue and purple fruits, for example) and low in saturated fats (fish and lean meat) can slow mental decline. Regular cardiovascular exercise has also been shown to improve memory and keep the brain "younger."
Q: What is metabolic syndrome?
A: Metabolic syndrome is a collection of conditions rather than a disease. The conditions that make up metabolic syndrome are: abdominal obesity; blood fat disorders that increase the buildup of fatty deposits in the arteries (low levels of HDL "good cholesterol," and high levels of LDL "bad cholesterol," and high triglycerides); high blood pressure; elevated blood sugar (insulin resistance); increased inflammation (elevated C-reactive protein in the blood); increased blood clotting (high levels of fibrinogen or plasminogen activator inhibitor-1 in the blood). A person with three of these six characteristics is considered to have metabolic syndrome.
Q: Why do I need to know about metabolic syndrome?
A: Recent studies have shown that the risk of Metabolic Syndrome is two times higher in transplant patients than in the general population. Metabolic syndrome increases the risk of heart attack and stroke. Therefore, patients who have had a bone marrow or stem cell transplant need to be aware of their increased risk.
Q: How do I know if I have metabolic syndrome?
A: If you already have any of the conditions that are seen in metabolic syndrome, ask your health care provider to do tests to see if you have any of the other conditions. If you haven't been tested recently for any of the conditions, ask your health care provider for the appropriate tests. Discuss the test results and their significance with your health care provider.
The following test results are recognized by the American Heart Association and the National Heart, Lung and Blood Institute to indicate the presence of conditions included in metabolic syndrome:
Q: What treatment is available for metabolic syndrome?
A: Because metabolic syndrome is a collection of conditions, each is treated independently. For example, a person with high blood pressure, elevated blood sugar and abdominal obesity might begin a diet and exercise program designed to help control blood pressure and blood sugar and to lose weight. Also, they might take blood pressure medication and medication to reduce their blood sugar.
Q: Will treatment for the conditions found in metabolic syndrome lower my risk of cardiovascular (heart and circulation) problems?
A: Yes. You can reduce your risk of heart attack and stroke (cardiovascular disease) by improving the conditions that put you at higher risk. Controlling blood sugar, high blood pressure, weight, cholesterol and triglyceride levels have been shown to improve cardiovascular health. Exercise and a healthy diet are two of the most important things you can do to lower your risk.
Q: What types of muscle and bone problems can be ongoing after transplant?
A: Three common problems that can continue long after transplant are avascular necrosis (AVN), decrease in bone density (osteoporosis or osteopenia), and muscle cramps or spasms.
Q: What is avascular necrosis (AVN)?
A: Avascular necrosis is a condition where the blood-supply to bones is damaged, resulting in the death and collapse of bony tissue, usually near the joints. In transplant patients, AVN is usually a result of the use of high-dose steroids such as prednisone for immunosuppression.
Q: What are the symptoms of AVN?
A: Transplant-related AVN occurs most frequently in the hips, but can occur in other joints as well. In the early stages, AVN might not cause any symptoms. As the disease progresses, however, pain in the joint may develop gradually, occurring first only when putting weight on the joint, and then progressing to constant pain. If untreated, the pain may eventually become disabling.
Q: What treatment is available for AVN?
A: If diagnosed early, AVN may be treated with medications, range of motion exercise and reduced weight bearing to allow the joint to heal or prevent further damage. Most patients will eventually require more extensive treatment with surgery. Surgical treatment of AVN can range from removal of portions of affected bone to replacement of the entire affected joint.
Q: What causes long-term muscle cramps and spasms long after transplant?
A: Patients with active chronic GVHD affecting the muscles can often have cramping and spasms as a result of the disease process. Medications to treat GVHD may also cause leg cramps. Cramps may persist for many years after GVHD is resolved, and cramps can be a problem for patients who have never had GVHD. Little is known about the cause of this symptom.
Q: What treatment is recommended for post-transplant muscle cramping and spasm?
A: Cramping and muscle spasms after transplant usually do not usually respond to treatment with conventional muscle relaxants and pain medications. Because dehydration can increase cramping, it is recommended that patients drink plenty of liquids. Some patients find that drinking tonic water, which contains quinine, provides some relief. Quinine is also available by prescription from your health care provider. Other prescription medications such as Baclofen and Dantrolene may be used alone or in combination with quinine. In some cases of severe cramping resulting from chronic GVHD, low-dose clonazepam may be effective. Talk to your doctor about your symptoms and the type of treatment that may be best for your situation. LTFU can provide specific guidelines to your doctor regarding the use of these medications.
Q: Should I be screened for osteoporosis sooner or more often than someone who has not had a stem cell transplant?
A. Yes. In transplant patients, exposure to radiation, chemotherapy and high-dose steroids increases the risk of osteoporosis (decreased bone density, with increased bone fragility and tendency to fracture). Menopause, smoking, low levels of calcium and vitamin D, and inactivity are additional risk factors for this disease. Patients should have a bone density or DEXA scan at least once after the transplant to determine a baseline value for bone density. If the baseline test shows decreased bone density, you should discuss the schedule of future screenings with your doctor. Bone density decreases more rapidly after production of female hormones goes down during menopause. Testing for bone density is especially important for women who have gone through menopause, regardless of whether menopause occurred naturally or occurred at an early age because of the transplant.
Q: What is peripheral neuropathy?
A: Peripheral neuropathy refers to damage to the nerves that transmit information between the central nervous system (brain and spinal cord) and the rest of the body. Peripheral neuropathy can cause numbness, tingling, burning pain, sensitivity to touch or muscle weakness. Peripheral neuropathy often affects the hands and/or feet, causing numbness or pain. This can make normal tasks such as buttoning a shirt or climbing a ladder difficult. For more information, go to:
Q: What causes peripheral neuropathy?
A: Peripheral neuropathy has many causes. Radiation and certain types of chemotherapy, such as vincristine, cisplatin, paclitaxel and etoposide are known risk factors. Other drugs such as Thalidomide are also known to cause peripheral neuropathy. Damage to nerves from a herpes zoster (shingles) infection is another frequent cause. In other cases, peripheral neuropathy may be inherited, or caused by injury or other disease processes.
Q: Is peripheral neuropathy after a transplant permanent?
A: In some cases, peripheral neuropathy gradually decreases or even goes away completely over a number of months after treatment. However, in other cases the damage done to the nerves may be permanent. Each case is individual.
Q: Is there any treatment for peripheral neuropathy?
A: Drug treatment may help patients with pain caused by peripheral neuropathy. In addition to standard pain-relieving drugs, anticonvulsants such as Neurontin (gabapentin) or Lyrica (pregabalin), and tricyclic antidepressants such as Cymbalta (duloxetine) may be helpful. Some patients may require safety measures if numbness makes it difficult to perform everyday tasks. Walking with a cane or using handrails may help patients with numb feet avoid falls, while wearing gloves may help those with numb hands avoid injury.
Q: Is my risk of getting skin cancer increased after transplant?
A: Yes, your risk of skin cancer is increased if you received radiation therapy either as part of the initial treatment or as part of the preparation for the transplant. The effect of radiation therapy is strongest among those who received that therapy before 18 years of age at the time of treatment, but anyone who has had radiation therapy is at increased risk. Also, acute and chronic graft-versus-host disease and the medications used to treat graft-versus-host disease increase the risk of skin cancers.
For basal cell carcinoma, lighter-skinned patients are at higher risk. For either basal or squamous cell carcinoma, patients who were under age 10 at the time of their transplant are at the highest risk.
Q: What can I do to prevent skin cancer?
A: Avoid excess ultraviolet radiation that comes from the sun, tanning booths or sun lamps. This can be accomplished in several ways:
Q: Is it OK to stop these prevention techniques once I am five years out from my transplant?
A: No, you should continue to practice these protective strategies no matter how long ago you had your transplant. Because of your transplant, your risk of skin cancer remains increased, and actually continues to increase with additional sun exposure over time.
Q: Where can I get more information on skin cancer?
A: There are many excellent Internet sites with good information on skin cancer.
Q: How common is skin cancer?
A: About 1 million people in the United States are diagnosed with skin cancer each year.
Skin cancer facts
Q: Is all skin cancer the same?
A: No. There are three main types of skin cancer. Basal cell carcinoma is the most common, and also the most treatable type of skin cancer. Basal cell cancers seldom spread to other areas of the body, but some patients develop multiple independent cancers. Basal cell cancers usually occur in areas that have been exposed to the sun, most often on the nose. In patients who have received radiation therapy, basal cell cancers can appear anywhere in the radiation field. For patients who have had total body irradiation as part of their preparation for transplant, basal cell cancers can occur anywhere on the body.
Squamous cell carcinoma also occurs on skin areas exposed to sun, especially the face and the backs of the hands, but they can occur anywhere on the body exposed to radiation therapy. Squamous cell cancer is easily treated. If left untreated, squamous cell cancer can spread to other areas of the body.
Malignant melanoma is the most serious type of skin cancer. Melanoma often develops from a mole and can spread to other parts of the body. Melanoma is very difficult to treat once it has spread.
Q: What symptoms of skin cancer should I be watching for after transplant?
A: Watch for changes in the skin such as sore, irritated or crusty areas that won't heal, new bumps or moles, or moles that grow or change shape or color. Skin cancers are generally more common in areas of the skin that have been exposed to the sun, but they can occur anywhere on the skin, especially after total-body irradiation or GVHD treatment.
Q: How important is exercise for bone marrow/stem cell transplant survivors?
A: Exercise is very important for maintaining health after a transplant. Studies have shown that a physically active lifestyle, along with an appropriate weight and healthful diet, can help prevent cancer recurrence, new cancers, and other chronic diseases. Exercise improves cardiovascular fitness, muscle strength, body composition, fatigue, anxiety, depression, self-esteem, happiness, and quality of life in cancer and transplant survivors. A serious disease diagnosis, treatment (including transplant), and recovery decrease physical activity levels. This decrease in activity increases the survivor’s overall risk for a new cancer, obesity, diabetes and heart disease.
Nutrition and Physical Activity During and After Cancer Treatment: An American Cancer Society Guide for Informed Choices
Exercise in cancer survivors: an overview of research
Physical activity interventions for cancer survivors
Q: I feel too tired and weak to exercise. Won’t exercise make me feel worse rather than better?
A: We all know that exercise or other physical activity can make us feel tired. However, you may also feel tired from inactivity. Studies of cancer patients, the elderly and other debilitated adults show that exercise is one of the best ways to fight fatigue. Even low-intensity exercise can have a dramatic effect in reducing fatigue. By gradually increasing physical activity, a person can gain stamina, or the ability to engage in more physical activity or exercise. As you exercise, you have more energy, gain strength and become able to do more.
Exercise Combats Cancer-Related Fatigue, Review Shows
Low-Intensity Exercise Reduces Fatigue Symptoms By 65 Percent, Study Finds
Regular Exercise Plays A Consistent And Significant Role In Reducing Fatigue
Q: How do I know what kind of exercise is best for me?
A: First, consult with your doctor to determine any limitations on your activity. Depending on your level of fitness or disability, your doctor may OK a general exercise program, or may refer you to a physical therapist for a specific program suited to your needs. Physical therapists can make recommendations on the type, frequency, duration, and intensity of exercise. Your exercise program can be individualized to your age, diagnosis, treatment, previous activity level, and other medical conditions. Don’t be discouraged if you are starting out slowly. Even small additions of activity can help decrease fatigue and build stamina to help you feel better. Check in regularly with your health care team if you have any problems or pain associated with your new activity. Transplant survivors, especially those who have had steroid therapy for a long time, are at an increased risk of certain joint problems.
Q: Are there any special programs to help cancer survivors maintain physical fitness?
A: Special fitness programs have been active for a number of years to help breast cancer survivors with specific problems related to mastectomy. Additional programs have been developed as the value of exercise for survivors of other forms of cancer has been recognized. Depending on where you live, you may have access to fitness programs designed to meet the special needs of cancer survivors. The Hutchinson Center and LiveStrong Foundation have partnered with the YMCA in Seattle to provide a free 10-week exercise program designed especially for cancer survivors. Some other YMCA locations and cancer centers around the country have similar programs. The American College of Sports Medicine certifies fitness instructors to work specifically with cancer patients and survivors.
Q: Will exercise help the long-term effects of my treatment?
A: Yes, most people benefit from some form of physical activity, during treatment and in early recovery. Exercise reduces fatigue and pain, improves mental and physical stamina, reduces stress, controls weight, prevents heart disease and improves overall quality of life. Weight-bearing exercise is the one of the most important things that you can do to preserve bone and muscle strength. Read more about exercise during treatment.
You should consult with your doctor before starting any exercise program. This is especially important for patient who might have hip damage (avascular necrosis or AVN) because of treatment with steroids.
Q: What is the right exercise program for me?
A: The right exercise program is one that starts slowly and gradually increases in time and intensity. Your muscles will tell you when you need to slow down and rest. Strength, flexibility and aerobic fitness are all important features of an effective exercise program. Most importantly, do activities that you enjoy. Read more on developing an exercise program and adding activity into your daily routine in an article from the American Cancer Society.
Q: Should I take extra vitamins and minerals because of the treatment I had?
A: We recommend vitamin supplements (without iron) for the first year after transplant. Immunosuppressed individuals need to be careful about the kinds of supplements they take.
The American Cancer Society has published a report with guidelines on nutrition and physical activity to prevent cancer and to improve quality of life after treatment.
Q: Since my treatment, I sometimes don't feel like eating. What can I do to ensure that I am getting proper nutrition?
A: One recommendation is to try eating small, frequent meals and snacks every one to two hours. Another recommendation is to keep high-protein, high-calorie snacks and foods handy to eat when you are hungry. Some people find that they are sensitive to certain foods after the transplant. Avoiding these foods may help maintain a good appetite.
Q: What is the most important thing a transplant survivor can do to ensure a healthier life?
A: Recent research has shown that regular exercise affects much more than physical strength, weight loss and cardiovascular health. A number of studies have shown clear benefits in memory and brain function, post-treatment fatigue, recurrent malignancy and the risk of new cancers.
Q: Can exercise really improve memory and brain function?
A: While many claims have been made for supplements, diets and other factors improving brain function, research studies have given conflicting results. However, moderate aerobic exercise, like walking for 45 minutes three times a week, has consistently improved memory and brain function - in some studies by as much as 20 percent.
Aerobic exercise increases the creation of new brain cells in the areas of the brain that control memory, complex thought and decision-making. Aerobic exercise also increases both the production of molecules that carry brain signals and the connections between cells where these molecules work. Other forms of exercise such as stretching and light strength training do not show the same specific benefit in memory and brain function, even though they certainly contribute other important health benefits.
Q: How does exercise improve fatigue?
A: A number of studies during the past 15 years have indicated that physical activity is the most important method for overcoming fatigue and decreased physical function after transplantation. Studies have evaluated exercise programs for cancer or transplant patients before, during, and after treatment. Study designs have varied, but the consistent finding is that exercise such as walking 30 minutes a day, strength training with resistance bands, and stretching can have a substantial benefit.
Shorter or less severe chemotherapy side effects, enhanced immune function and elevated mood have all been observed to be linked to exercise. Improvement in these areas significantly decreases the fatigue that results from prolonged, intensive treatments like chemotherapy and bone marrow or blood stem cell transplantation.
Q: What effect does exercise have on cancer risk?
A: The physiological changes that result from exercise have several effects on the risk of cancer. More than two dozen studies have shown that women who exercise have a 30-40% lower risk of breast cancer. This result appears to be related to the effect of exercise on estrogen levels.
Similarly, dozens of studies have shown that regular exercise decreases risk of colon cancer by 20%, especially in men. Studies have even shown that exercise reduces the risk of cancer in heavy smokers.
Exercise can also decrease the risk of recurrent disease in cancer survivors. Exercise reduces the amount of fat in the abdomen even in those who don’t have dramatic weight loss. The decreased amount of fat in the abdomen reduces insulin levels that might otherwise promote the growth of cancer cells.
Q: What can I do to improve my chances of success when starting an exercise program?
A: Work with your healthcare provider to understand any limitations that you might have and to determine the level of exercise that is appropriate for your specific situation. Having realistic goals about what you can do and how quickly you can increase your activity will help you be successful.
It’s also very important to find a type of exercise you like and that is easily accessible to you. Getting started each day is the hardest step, so make that part as easy as you can by choosing something you can do for a few minutes at a time, if necessary. If you can do an activity for 30 days in a row, it is likely to become a habit, and you’ll find it much easier to continue.
You will have better success if you exercise with someone else or if are accountable to someone else in maintaining your program. Start a walking partnership with a friend or family member. Walking a dog is another great way to be accountable. You can be sure that your dog will eagerly await your daily walks.
Q: Do adolescents have special needs after transplant?
A: For adolescents, the physical, psychological and social impacts of cancer or another life-threatening disease occur at a time when many other changes are taking place in their lives and bodies. Chemotherapy, radiation, immunosuppressive therapy or graft-vs.-host disease during childhood or adolescence can affect growth and development, making teen survivors physically different from their peers and increasing the risk of medical problems in adulthood.
Q: How are the lives of adolescent transplant survivors different from those of their peers?
A: Even after successful treatment, the effects of transplant can completely disrupt the normal experience of teenage life. Even if the transplant was during childhood, physical differences and disabilities, increased dependence on parents and isolation from friends can set the teen transplant survivor apart from their peer group and add challenges that aren’t normally faced at this time of life. Interference with growth and development, hormones and metabolism create additional problems at this age when the body is or would normally be rapidly changing.
Q: What kind of special health care needs do I have as an adolescent transplant survivor?
A: Late adolescence and young adulthood is frequently a time when people only go to see a doctor if they are sick.
However, as a transplant survivor, even years after a transplant, it is important to continue to be seen on an annual basis by a health care provider. It is also important for you to know what your cancer treatment history was. You can ask your transplant clinic for a summary of your treatment if you don’t already have one.
Be proactive with your health and making sure that you eat a healthy diet, exercise and that you know what kinds of screening tests you might need — and whether they should start at a younger age than for the general public, such as tests for breast, cervical or other cancers (depending on the type of treatment you received).
Q: How are adolescents affected by transplants differently from adults or small children?
A: Psychologically and socially, the teen years are already a challenge. Peer acceptance, body image, becoming more independent and a feeling that you can do anything are important at this point of life. A teen transplant survivor has often lost all of these things.
They may have long-term fatigue, scars, hair loss and weight gain or loss. Instead of being out with friends, they may have been away for months of treatment and had limited public contact even longer while immunosuppressed. They may have become more dependent on their parents just as their friends are becoming more independent. Their view of the future may be full of uncertainty and fears about health, relationships and careers.
Q: What can parents do to help their adolescent deal with post-transplant issues?
A: Talk to your teen’s health care providers and be sure they can address the special needs of survivors in this age group. If you have access to providers who specialize in adolescent survivors, you may want to include them in your teen’s care. Be aware that your teen may want privacy to speak with their providers about body image, sexuality or other issues that are especially important at this age. Provide resources to help your teen deal with their experience as a cancer and/or transplant survivor. As much as possible, allow your teen to have the normal experiences of being a teenager in addition to being a transplant survivor. Help your teen develop healthy lifestyle habits to reduce the risk of late effects.
Q: Are there resources to help teens connect with peers who understand their experience?
A: Adolescent and young adult (AYA) cancer and transplant survivors have been instrumental in forming resource and networking groups to provide support for people like themselves. The websites of groups like "Planet Cancer" and "I’m too Young for This!" provide a wealth of information and opportunities for social networking for AYA cancer survivors.
Q: What if I have trouble with school work or need help paying for college?
A: Each state has special programs for students with learning disabilities or health issues that have put them behind in their school work. Your school likely has a staff person or department dedicated to evaluating and helping students with special needs. A number of organizations have scholarship funds to help cancer survivors, transplant recipients or those with a specific disease pay for higher education.
Q: Are the risks of late effects after a transplant different in children as compared to adults?
A: Yes. Because a child's body is still developing, the effects of radiation and chemotherapy, whether used directly to treat the disease or as part of the transplant, can cause long-term problems not faced by adult transplant patients. Cells that are growing rapidly are more prone to damage from these treatments. This damage can impair the body's ability to develop normally. Also, patients living a normal life span have a longer period of time to develop other late effects, such as secondary cancers, as compared to patients transplanted later in life.
Q: What types of problems in growth and development can children have after a transplant?
A: Depending on the age of the child, different aspects of growth and development may be affected. Many children require supplemental growth hormone to continue to develop in height. Children who have not reached puberty at the time of treatment may require hormone supplements in order to develop secondary sexual characteristics. Very young children whose permanent teeth have not yet formed may have abnormal or absent secondary teeth. This problem can be treated with dental implants. Pediatric transplant patients also have a higher risk of endocrine problems such as diabetes and thyroid disease.
Final adult height of patients who received hematopoietic cell transplantation in childhood
Diabetes mellitus in long-term survivors of pediatric hematopoietic cell transplantation
Endocrine dysfunction and parameters of the metabolic syndrome after bone marrow transplantation during childhood and adolescence
Q: Can a pediatric bone marrow or stem cell transplant cause lung and breathing problems?
A: Studies have shown that even if a child doesn't have any respiratory symptoms, there may be significant impairment of lung function after a transplant. The risk varies depending on the type of conditioning regimen and other factors. Total body irradiation and certain medications may increase the risk of lung problems. Development of chronic graft-vs.-host disease also increases the risk of lung problems. Pediatric transplant patients over the age of six years should have lung function tested each year as part of their routine follow-up care.
Q: Can a transplant cause learning disabilities in a child?
A: Children who received irradiation to the head before a transplant can develop some learning disabilities after a transplant preparative regimen containing total body irradiation. However, children who have not received any irradiation except for the total body irradiation appear to not have learning disabilities. The risk of permanent problems with memory, concentration and speed of processing information may be greater when very young children have a transplant, because the brain is still developing at that age.
Q: What can be done to help a child with learning differences after a transplant?
A: There are many ways to help a child with learning differences after transplant. Having information presented in multiple ways is very helpful. For example, to teach a child to tie a shoelace, you could explain how to do it, let them watch you do it, and then guide their hands while they do it. Also, be sure allow enough time for the child to complete a task rather than setting time limits. If your child is in school, work closely with the teachers to be sure they understand your child's needs.
Q: Are there any federal laws that protect me as a cancer or transplant survivor when it comes to employment?
A: The Americans with Disabilities Act (ADA) requires that employers with more than 15 employees make reasonable accommodations to help employees with disabilities do their jobs. A person with a disability is defined as "a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment." The Family Medical Leave Act is another federal law that may offer protection if you need to take time off work due to certain family or medical issues.
Q: Are there state or local laws that protect my employment rights?
A: Some state and local governments have additional laws that provide employment protection. To learn about the laws in your area, contact the government agency for your state or city that deals with employment law.
Q: Does the ADA specifically address bone marrow and stem cell transplantation?
A: The ADA does not specifically address all of the different diseases and conditions that could cause a person to be considered disabled. However, the U.S. Equal Employment Opportunity Commission has published information regarding cancer and the ADA.
Q: I'm ready to look for a new job. How do I deal with the gap in my employment that resulted from my treatment?
A: A resume format that lists positions in date order may make a time gap more noticeable. Using a format that focuses on skills rather than specific jobs may help. If asked about a gap between jobs, answer honestly, but remember that you are not required to give medical information about yourself during the interview process unless it relates directly to your ability to do the job.
Q: Are there organizations that can help me with employment issues after my transplant?
A: There are a number of good government and private organizations.
Q: Are transplant patients at a higher risk for cardiovascular (heart and circulatory) problems?
A: Studies have shown that some patients experience an increased risk of cardiovascular problems after a transplant. There is evidence of a higher risk in patients who received an allogeneic (donor) transplant and also in certain autologous transplant recipients. Risks vary depending on many factors, including a previous treatment with certain types of chemotherapy, radiation to the chest, type of conditioning for transplant, type of transplant, gender, age at transplant and graft-vs.-host disease history. Patients who are already at an increased risk due to factors such as diabetes, smoking, poor diet and lack of exercise may be at particularly high risk. A strong family history of heart problems also is an indicator of increased risk after a transplant.
Late Pulmonary, Cardiovascular, and Renal Complications after Hematopoietic Stem Cell Transplantation and Recommended Screening Practices
Stem-cell transplant may boost cardiovascular disease
Q: Can children have cardiovascular problems after a transplant?
A: Yes, children can be at an increased risk of cardiovascular problems. Even if they don't have symptoms of heart or circulatory problems, damage may still be present that could affect the child in adolescence or adulthood.
Q: What causes cardiovascular problems after a transplant?
A: Total body radiation, center of chest radiation and chemotherapy drugs called anthracyclines appear to be the main causes of post-transplant cardiovascular problems. Some examples of anthracycline drugs are aclarubicin (Aclacinomycin A), daunorubicin (Cerubidine), doxorubicin (Adriamycin), epirubicin (Ellence) and pirarubicin (THP). Novantrone (mitoxantrone), even though not a pure anthracycline drug, also is thought to have some cardiotoxicity.
Certain after-effects of the transplant can also contribute to an increase in risk of cardiovascular disease. GVHD disease may cause inflammation in the circulatory system, which may lead to arteriosclerosis. Some of the medications used to treat GVHD may also cause problems with excess weight gain, high blood pressure, and high cholesterol. Metabolic syndrome, a clustering of various traits, is twice as common in transplant patients as in the general population and greatly increase the risk of heart attack and stroke.
Q: What tests should I have to find out if I have cardiovascular effects from my bone marrow or stem cell transplant?
A: All patients should be screened annually for risk factors of cardiovascular disease, including a thorough history that assesses lifestyle issues such as smoking, physical activity, nutrition and any cardiovascular events or therapies since the previous exam. Patients who are at high risk due to anthracycline chemotherapy, chest or total body irradiation, family or personal history, smoking or other factors should have tests performed as indicated.
Late Pulmonary, Cardiovascular, and Renal Complications after Hematopoietic Stem Cell Transplantation and Recommended Screening Practices
Monitoring for Cardiovascular Disease in Survivors of Childhood Cancer: Report From the Cardiovascular Disease Task Force of the Children's Oncology Group
Q: What can I do to improve my cardiovascular health?
A: If you smoke, even if it's just a little or once in a while, there is no safe amount and quitting completely is the best thing you can do for your health. Not only does smoking affect your cardiovascular health, it also increases the risk of a variety of cancers. People who have received transplants are already at increased risk of second cancers. Please, talk to your clinical provider about strategies to quit. Also, eat a healthy diet and, if safe for you, strive to meet recommended physical activity levels.
Q: I am between six months and one year post-transplant, but I am now off of all systemic immunosuppressive therapy. Are there still activities or exposures I need to avoid?
A: Patients who are less than a year post-transplant are still reconstituting their immune systems. Even if you have stopped all systemic immunosuppressive therapy, there are still things you need to avoid. The following activities and exposures are generally considered unsafe for patients less than one year after transplant. Please check with your health care provider or LTFU for specifics regarding your individual situation. Go to the Information for Physicians page for more information.
Q: It has been more than one year since my transplant, but I am still taking systemic immunosuppressive therapy. What activities and exposures do I still need to avoid?
A: Even after a full year has passed, patients who are on systemic immunosuppressive therapy are generally required to continue to avoid certain exposures to protect themselves from infection. Your health care provider or LTFU can help you determine if your individual circumstances are different. If you have a Hickman catheter or other venous access device, you should avoid activities such as golfing and shooting rifles or shotguns to avoid dislodging the catheter. Go to the Information for Physicians page for more information.
Q: I am more than one year post-transplant, and I have been off systemic immunosuppressive therapy for a while. Can I return completely to my previous activities without limitations?
A: Unless your health care provider has given you restrictions in your activities, most patients can begin to return to their previous activities once they are one year post-transplant and have stopped taking any systemic immunosuppressive therapy. However, patients who return to outdoor activities are strongly advised to minimize sun exposure through the proper use of sunscreen (more than SPF 15), hats, long-sleeved shirts and pants. The risk of skin cancer is much greater in people who have received radiation, have been on immunosuppressive therapy, or who have had chronic GVHD of the skin.
Q: What health screening tests should I have after transplant, and when should I have them?
A: Three major organizations (Center for International Blood and Marrow Transplant Research, the American Society for Blood and Marrow Transplantation and the European Group for Blood and Marrow Transplantation) agree on general recommendations for health screening after a transplant, outlined on the chart below. Other screening or prevention measures may be recommended by your health care providers depending on your particular situation.
The below health care follow-up is recommended for transplant patients:
Healthy lifestyle for survivors, nutrition and exercise:
Wiley Online Library — Nutrition and physical activity guidelines for cancer survivors
Starting an exercise program:
WebMD — Exercise for Cancer Patients: Fitness After Treatment
Body image after cancer or transplant for women, men and teens:
Look Good Feel Better — Program Finder
Specialty shopping in Seattle:
Shine: Seattle Cancer Care Alliance Cancer Specialty Store
Support for caregivers:
Caregiver Community Action Network
Q: Are lung problems common after a transplant?
A: It is estimated that 30 percent to 60 percent of all hematopoietic stem cell transplant (HSCT) patients develop some type of post-transplant lung problem. These can be infections, such as aspergillus or cytomegalovirus (CMV), or non-infectious problems such as bronchiolitis obliterans syndrome (BOS) and bronchiolitis obliterans organizing pneumonia (BOOP).
Q: What causes lung problems after a transplant?
A: Bronchiolitis obliterans syndrome (BOS) and bronchiolitis obliterans organizing pneumonia (BOOP) are the most common noninfectious lung problems occurring in allogeneic transplant patients. Currently, BO is classified by the National Institutes of Health as a form of graft-vs.-host disease (GVHD) in the lung. Patients are generally at risk for BO if they have GVHD at other sites, are older, had poor lung function before transplant, and had respiratory viral infections. BOOP is seen in association with GVHD, but can occur without active GVHD. Currently, the cause of BOOP is unknown. However, we believe this is also an immune mediated problem that results in inflammation in the lungs. Infectious lung problems generally occur in patients taking immunosuppressive therapy for GVHD.
Q: What is the difference between bronchiolitis obliterans syndrome (BOS) and bronchiolitis obliterans organizing pneumonia (BOOP)?
A: BOS is generally a disease of the small airways, where the small airways become narrower presumably due to GVHD, to the point that airflow is limited through the airways. On lung function testing, this appears as an obstructive pattern. When detected, BOS is usually severe and generally irreversible.
The goal of therapy with immunosuppression is to prevent progression. Unfortunately, BOS is often "silent" and clinically unnoticed until it is severe. BOS is generally not detectable using standard chest X-ray or CT, but can be detected using a high-resolution CT scan.
Respiratory infections can also cause airflow obstruction, so patients generally need a bronchoscopy to make sure an infection is not present before initiation of therapy. Therefore, our efforts here have focused on how to identify patients earlier, so treatment may be started to stop the progression of BOS before it becomes severe. BOOP is an inflammatory disease that involves the small airways and the alveoli, the gas exchanging units in the lungs. Most commonly, this results in a restrictive pattern on lung function testing, which means that the lungs cannot expand well.
BOOP is detectable using a CT scan or chest X-ray. However, because it looks like pneumonia, additional studies such as bronchoscopy and lung biopsy are usually necessary to confirm the diagnosis. BOOP differs from BOS in that it is very responsive to immunosuppressive therapy. Most BOOP cases are completely reversible, although a small percentage of the population will have steroid resistant or dependent BOOP.
Q: What can I do to avoid lung problems after a transplant?
A: Research has shown that patients can develop significant lung function impairment before they begin to notice symptoms. For this reason, it is very important that even patients who don't appear to have a problem be evaluated by their health-care provider. These lung problems tend to occur within the first two years after transplant. This is why the latest recommendations from the National Institutes of Health suggest that lung function is followed closely during the first two years after transplant.
Pulmonary function tests should be obtained every three months during the first year, then every six months during the second year, then yearly thereafter. Each of these pulmonary function tests should be compared to each other, as well as the pretransplant pulmonary function test, to determine if there has been a significant change. Patients who have been prescribed medication to prevent infections, especially while on immunosuppressive therapy, should consult their health-care provider before making any changes regarding their medications.
Q: Are there special medical tests or preventive measures I need to take because I had a bone marrow or stem cell transplant?
A: Yes. The treatment you received may put you at a higher risk for certain types of problems. For this reason, we recommend that you have certain medical tests each year (or on a regular schedule) for the rest of your life. We also recommend that you follow basic healthy practices like not using tobacco, limiting alcohol, eating healthy foods, and exercising and using sunscreen regularly.
Q: What types of tests should I have on a regular basis?
A: We recommend that you have the following procedures performed by your health care providers:
Q: Do I need to pay special attention to cancer screening after a transplant?
A: Several factors contribute to an increased risk of cancer in patients who have had a transplant. If you were treated for a malignant disease, there is a risk that the disease could come back. Anyone who has had cancer is also at a higher risk of developing another malignant disease. The transplant and related treatments with chemotherapy and radiation therapy also increase the risk of certain types of cancer. We have seen an increase in the risk of cancers of the skin, mouth, breast, thyroid gland and brain in patients who have had a marrow or blood cell transplant. The risk of liver cancer is increased in patients who have infection with hepatitis C virus. Patients should inform their health care provider that they are at an increased risk for these diseases.
Q: What additional preventative measures can I take to avoid problems?
A: We recommend that all patients follow healthy lifestyle guidelines. Exercise, especially walking and weight-bearing exercise for 20-60 minutes every day to prevent bone loss and build stamina; eating a healthy, balanced diet including at least five daily servings of fruits and vegetables; vitamin and mineral supplements for calcium and vitamin D, to prevent bone loss if your diet doesn't contain at least 1500mg of calcium and 800iu of vitamin D per day; avoiding exposure to sunlight by wearing a hat, long-sleeves and/or sunscreen; regular hand-washing to avoid illness, especially during cold and flu season.
Q: What treatments are available if a relapse occurs after transplant?
A: Treatment options will depend on the particular circumstances for each person, including their original diagnosis. However, there are several different types of treatment that may be available. For patients with CML and some other diseases, donor lymphocyte infusion (DLI) can be used to induce a graft-vs.-leukemia or graft-vs.-tumor effect while minimizing the risk of graft-vs.-host disease (GVHD). Drug therapies include Gleevec and interferon.
These medications have been effective for treating CML in relapse with minimal disease, but treatment must be continued indefinitely in order to keep the disease under control. For patients with other diseases, a second transplant might offer the best chance of long-term survival. However, results after a second transplant are not as good as with a first transplant, and a second transplant is not always possible. Additional courses of chemotherapy, radiation therapy or other treatments are also used in some situations. If you have a relapse after a transplant, you should discuss treatment options with your physician. The LTFU can provide assistance in assessing treatment options.
Q: What is a donor lymphocyte infusion (DLI)?
A: Donor lymphocyte infusion is a method used after an allogeneic transplant to help the body destroy any remaining malignant cells. Administration of immunosuppressive medications is stopped, and then immune cells from the original donor are infused. The immune response of the donor cells against the malignant cells in the patient can induce a remission. This is called a graft-vs.-leukemia (GVL) or graft-vs.-tumor (GVT) effect.
Because the infusion of donor cells can cause graft-vs.-host disease (GVHD), clinical trials are testing methods to reduce the risk of GVHD without decreasing the effectiveness of the GVL or GVT effect. One such method is dose escalation, where a low number of cells is given for the first infusion, and higher numbers of cells are given for subsequent infusions if the first infusion did not cause GVHD.
Q: What is Gleevec, and when is it used to treat leukemia?
A: Gleevec is a therapy used to treat chronic myeloid leukemia (CML) when a DNA abnormality called the Philadelphia chromosome is present. This therapy was first made available for treatment of CML in May 2001. Gleevec interferes with the abnormal proliferation of cells that have a Philadelphia chromosome. Gleevec is not used to treat other forms of leukemia. Gleevec may be used for treatment of relapse after a transplant as a way to reduce the number of abnormal cells before donor lymphocyte infusion.
Q: Why do I need to get vaccinated after a stem-cell transplant?
A: Studies have shown that the levels of antibodies to diseases that can be prevented by vaccination decrease during the first few years after a stem cell or bone marrow transplant. The immunities acquired by the patient prior to the transplant are generally lost. This can occur after both allogeneic and autologous transplantation. In addition, while some immunity may be transferred from a donor, this is generally limited and can't be relied upon to prevent infection. Chronic GVHD increases the likelihood that immunity will be lost. Transplant patients are at a higher risk of infection until their immune systems become stronger. Vaccination can protect the transplant patient from infections such as childhood diseases, influenza and pneumococcal pneumonia.
Q: Are there vaccinations I should not receive after a transplant?
A: Transplant patients should definitely NOT receive the smallpox vaccine because it is made from a live virus (vaccinia) and can cause vaccinia infection. It is also important that patients NOT receive the measles, mumps and rubella (MMR) vaccine until two years post-transplant and at least one year after discontinuing immunosuppressive therapy. The same is true for other live-virus vaccines, such as BCG, oral (Sabine) polio, yellow fever and typhoid. The Varicella-zoster (chickenpox/shingles) vaccine is currently not generally recommended, pending further research. If the benefits outweigh the risks, it may be given to help prevent chickenpox if the patient doesn't already have antibodies to the chickenpox virus.
Q: What vaccinations should I have and when should I have them?
A: We recommend that patients receive the most common vaccinations one year after their transplant. These include: diphtheria, tetanus, Haemophilus influenzae type B, Streptococcus pneumoniae, Salk poliovirus (inactive virus) and influenza (annually). Children less than 7 years of age should also receive the pertussis vaccine. Hepatitis A and B vaccines may be recommended for certain patients.
If blood tests show that immunity has waned, we may recommend additional vaccination doses. Other vaccinations may be recommended on an individual basis by your healthcare provider. Please contact LTFU at 206.667.4415 if you or your healthcare provider has questions about which vaccinations are needed.
Patients being treated for chronic GVHD may not develop an adequate immune response to vaccinations. However, even a small increase in immunity is considered valuable for such patients.
Q: Do I need to take any precautions if members of my family are receiving vaccinations?
A: It is strongly recommended that the patient's family members and close contacts be current on vaccinations to help protect the patient from exposure to infectious diseases. However, if a family member or other close contact receives a vaccine using a live virus, you may need to take precautions. For the first year after transplant, or while a patient is receiving immunosuppressive therapy, they are at risk of contracting the disease from a person who received a live-virus vaccine within the previous few months. Please contact Long-Term Follow-Up for information on precautions needed if you will be in contact with someone who has received a live-virus vaccine.
Q: What if I'm traveling overseas?
A: Please contact Long-Term Follow-Up regarding specific recommendations related to international travel vaccinations well in advance of your planned travel dates.
Q: What role has Fred Hutch played in the development of bone-marrow and stem-cell transplantation?
A: At the time the Hutch was founded in 1972, basic research that would lead to the treatment we now know as bone-marrow or stem-cell transplantation had been in process for nearly 40 years. Transplants between identical twins, because they have identical genetics, had been successful for more than 10 years. However, many difficult challenges remained and advances were slow in coming. Recurrent leukemia, problems of graft failure, failure to eradicate the disease, infection and graft-vs.-host disease (GVHD) meant the treatment was still a highly experimental, last resort for the dying. When the center opened its new facility in 1975, the primary clinical focus was the pioneering work of Dr. E. Donnall Thomas in bone-marrow transplantation. Thomas's work, which was considered radical at the time, had attracted scientists from around the world. The center became the recognized leader in the field of bone-marrow transplantation. Since that time, the work of the center has led to many advances in the field.
Q: Who performed the first successful human bone-marrow transplant?
A: The first successful transplant was performed by Dr. Thomas in Cooperstown, N.Y., in the late 1950s. The transplant involved identical twins, one of whom had leukemia. Because identical twins share the same genetic make-up, transplants between twins avoid the problems associated with non-twin transplants, such as graft-vs.-host disease. GVHD occurs when the transplanted cells (the graft) attack the patient (the host) as they would a foreign object or infection. In 1975, Thomas moved his research to Fred Hutchinson Cancer Research Center, where much of the developmental work on bone-marrow and blood stem-cell transplantation has been done. He received the Nobel Prize in physiology or medicine in 1990, along with Dr. Joseph E. Murray, who pioneered kidney transplantation.
Q: When was the first non-twin sibling bone-marrow transplant performed?
A: It wasn't until 1968, in Minnesota, that the first successful non-twin (allogeneic) transplant was performed. In this case, the donor was a sibling of the patient. By this time, it was known that a key to a successful transplant was a specific type of genetic matching (known as HLA) of the donor to the patient. Because siblings receive DNA from the same parents, a sibling is the most likely person to be a good match. Having a closely matched donor can help avoid graft-vs.-host disease. However, many people do not have a sibling who is HLA-matched. In this situation, an HLA-matched unrelated donor can be used.
Q: When was the first unrelated bone-marrow transplant performed?
A: The first successful unrelated donor transplant took place in 1973, in New York, when a young boy with a genetic immunodeficiency disorder received multiple marrow transplants from a donor identified as a match through a blood bank in Denmark. The first successful unrelated donor transplant for a patient with leukemia took place in 1979 at the Hutch.
Q: How did bone-marrow registries develop?
A: In 1979, Laura Graves, a 10-year-old patient with leukemia, was referred to the Hutch. Laura did not have a matched donor in her family, so center staff searched through their database of platelet donors in an attempt to find a match. Luckily, one of the laboratory staff turned out to be a good match. Laura's transplant was successful, and she did not develop graft-vs.-host disease. Although Laura died two years later of recurrent leukemia, the Graves family continued to lead an effort to establish a national registry of people volunteering to be bone-marrow donors. The National Bone Marrow Donor Registry, as it was called initially, was federally funded in 1986, and in 1987, the first donor match was made. Today, the national registry is called the Be The Match Registry, operated by the National Marrow Donor Program/Be The Match, and it includes a network of donor centers, transplant centers and other registries in 41 countries. It is the world’s largest and most diverse donor registry with more than 11 million potential marrow donors and 193,000 cord blood units.
Q: What is the genome and why is it important in medical research?
A: The genome consists of all the genetic material required to guide an organism’s development, growth and health — the "code of life" for that organism. This genetic material forms a chemical code that is different for each individual, except in the case of identical twins.
Most of the small differences in the genome between people do not cause disease. However, certain differences cause errors in function. In a few cases, these errors can directly cause rare genetic diseases such as sickle cell anemia or Huntington's disease. More often, a specific combination of several of these functional errors in different parts of the genome contribute to the risk of more common diseases like diabetes or heart disease.
Q: What is a Genome-Wide Association Study?
A: A GWAS study examines the complete genome of a number of people to find variations that occur in association with a specific disease by comparing the genomes of people who have that disease to the genomes of people who do not have the disease.
By looking more closely at the areas of the genome where these variations occur, scientists can identify the specific errors that contribute to a particular disease.
Q: How is GWAS study information used?
A: GWAS studies have been used to identify genetic variations that contribute to the risk of a number of diseases, including macular degeneration (a form of blindness), Parkinson’s disease, prostate cancer and diabetes. GWAS findings have also identified genetic variations that influence response to certain medications, such as antidepressants.
Scientists can enter the anonymous genetic codes of their study participants into centralized databases. Researchers authorized to use the database can then search the genetic code of large numbers of people to find which areas of the gene are associated with a particular disease.
The findings of GWAS studies can be used to develop tests to help people learn if they have an increased risk for a certain disease or if they are likely to have a good response to specific types of medication.
Q: Could knowing my genetic information and risk of disease be used against me?
A: In the past, many people worried that their genetic information could be used by medical insurers to deny coverage or claims, or by employers to make hiring and firing decisions. A federal law — the 2008 Genetic Information Nondiscrimination Act — specifically prevents discrimination in these areas based on genetic information.
Q: How is my genetic information from a GWAS study kept private?
A: There are many regulations in place to protect GWAS data. Scientists who want to use a GWAS database are required to get the approval of the Institutional Review Board that protects the privacy of people who have agreed to participate in this type of study.
Documents showing IRB approval are then submitted to the GWAS database when the scientist asks for permission to use the genetic data. No personal identification is included with the genome information in the database. Many layers of security are in place to ensure privacy. An individual person could be identified only if a scientist already had a sample of that person’s genetic information.
Q: Are scientists required to submit their GWAS findings to a centralized database?
A: When a grant or contract from a government agency such as the National Institutes of Health or the National Cancer Institute pays for the research, scientists are required to either submit their findings to a centralized database and provide a plan for ensuring confidentiality, or justify why the data cannot be submitted.
Studies funded by a private agency are not required to submit their findings to any centralized GWAS registry. Even when a study is funded by a private agency, many scientists submit data to a registry in order to make it available to other researchers and to advance the study of genetic variations.
Q: Is it possible that I could benefit personally from joining a GWAS study?
A: It is unlikely you will directly receive any personal benefit from participating in a GWAS study. Identifying areas of the genome that may influence disease risk is the starting point.
Further studies will be needed to develop treatments and interventions for the diseases being studied. Typically, this process takes many years.
Q: What is life expectancy?
A: Life expectancy describes how much longer, or to what age, a person at a specific age could be expected to live. It is a mathematical average based on the experience of a specific group of people. The experience of each person in the group affects the average for the entire group. The average for the entire group would be decreased if some people in the group lived for a short time, even though the rest of the group lived much longer.
Q: Is the transplant itself responsible for a shorter life expectancy?
A: The shorter life expectancy is related to a number of things. The combined effects of the pre-transplant disease, the treatment for that disease before the transplant, and the transplant itself all contribute to the shorter life expectancy. Some of the treatments before a transplant, such as total-body radiation and chemotherapy, are toxic to the body and can contribute to complications such as secondary cancers.
Q: Why did you do this study?
A: We did this study for three reasons:
Until now, no one had examined impacts on life expectancy for a large group of adult and pediatric transplant patients. The Hutchinson Center is in a unique position to study this population because we have kept track of a large number of patients for a longer period of time than any other institution.
Q: Why did you compare transplant patients to the general population?
A: Comparing the experience of different groups to the experience of the general population is a standard method for analysis of life expectancy. The general population creates a reference point, so that many different groups can be compared to the same standard. Using the general population as a comparison does not imply that the experience of transplant patients is bad, or worse than expected.
Q: Did the study reveal any encouraging findings?
A: Yes. We found that 80 percent of the five-year survivors were alive for an additional 15 years. This result for survival at 20 years after the transplants is very encouraging news.
Q: What factors contributed to a shorter life expectancy?
A: Decreased life expectancy was due to a greater number of deaths at an earlier age in the transplant patient group than in the general population. These deaths were from relapse and new cancers, chronic graft-vs.-host disease and infections, and respiratory and cardiovascular diseases. Relapse was less frequent in patients who had allogeneic transplants than in those who had autologous transplants. In allogeneic transplants, immune cells from the donor help eliminate malignant cells in the recipient.
Q: Were there groups of patients who had results that were better than average for transplant patients?
A: Yes. Results were better for patients who had transplants after 1983, compared to those who had transplants before 1983. Patients with chronic myeloid leukemia, or a non-malignant disease, had better results than those with other diseases.
Q: If I had my transplant at another center, would my expected life span be any different?
A: We believe the results would be the same. The study also compared results between the Hutchinson Center and a group of Canadian transplant centers. Survival rates were similar for five-year survivors. Any differences in survival would most likely occur during the first five years. In that respect, recent studies have shown better results at the Center as compared to other centers.
Q: What can I do to increase my chances of living longer?
A: Maintain a healthy lifestyle and have regular medical checkups that include cancer screenings. Do not use tobacco products, and use sunscreen or clothing to avoid sun exposure. Get the flu shot every year. Any infections should be treated right away. Patients who are not taking immunosuppressive medications should get their teeth cleaned at regular intervals.
A healthy lifestyle also includes regular exercise. As always, consult your doctor before starting any strenuous physical activity. Contact LTFU at 206.667.4415 if you need assistance with problems that might be related to your transplant.
Q: What other studies could give us more information on life expectancy after a transplant?
A: It would make sense to compare groups of patients with the same underlying illness according to whether they had a transplant or not. We already know that for many diseases, the chance of surviving for five years is higher with a transplant than without a transplant. We also know that for patients with acute myeloid leukemia, survival rates after five years are higher with a transplant than without a transplant. We have not yet studied other diseases in the same way because information about long-term survival after treatment without a transplant is not available.
Q: How is rejection prevented and controlled when the patient's own immune system is still functioning in a mini (non-myeloablative) stem-cell transplant?
A: First, cells from a fully HLA-matched donor are used whenever possible to reduce the risk of rejection. Low-dose radiation, with or without chemotherapy, is used before the transplant to suppress, rather than destroy the patient's immune system. Immunosuppressant drugs are then used to maintain the immune suppression at the proper level. Carefully controlling the level of immunosuppression allows the donor stem cells to take hold and begin producing a full range of blood and immune system cells in the patient.
Q: What is "mixed chimerism" and how does it relate to mini stem-cell transplants?
A: Chimerism is a condition where cells in an organism come from two different individuals. The end result of a blood or marrow transplant is that blood and marrow cells come the donor, while all other types of cells come from the patient. The term "full" chimerism means that all blood and marrow cells in the patient came from the donor. The term "mixed" chimerism means that some cells came from the donor and some came from the patient. After a transplant, the change from patient blood and marrow cells to donor cells does not occur all at once. This change occurs more slowly after a mini or non-myeloablative stem-cell transplant as compared to a myeloablative transplant. With both types of transplant, the immune cells of the donor help this change to occur.
Q: If mini stem-cell transplants are so much easier on the patient, why are myeloablative transplants still being done?
A: Unfortunately, mini or non-myeloablative transplants can't be used in every situation. This type of treatment works best for treatment of certain diseases and is not effective for other diseases, depending on whether immune cells of the donor can eliminate malignant cells in the recipient. Immune cells of the donor are most effective when the patient has a low number of malignant cells. In order to have a successful outcome, the patient's disease might have to be in remission before a non-myeloablative transplant. Clinical trials are in progress to find out whether mini or non-myeloablative transplants can be successful for patients who do not have a fully HLA-matched donor. Further research is needed to determine whether mini-transplant is a safe and effective treatment for all types of disease that are treated by stem-cell transplant.
Q: Are the long-term effects of a mini (nonmyeloablative) transplant different from a standard (myeloablative) transplant?
A: Because the first mini-transplants were performed less than 10 years ago, it's difficult to say whether the long-term effects will be similar to those that occur after a myeloablative transplant. The number of patients with long-term effects due to radiation will likely be lower after a non-myeloablative transplant. For example, the risk of skin cancer will likely be lower after a non-myeloablative transplant, since higher levels of radiation have been associated with an increased risk of skin cancer. Long-term effects related to immunosuppressive medications would depend on the dose and duration of treatment. Analysis of data on long-term survivors of non-myeloablative transplants will be needed to determine whether there are any differences between the two types of transplant.
Q: How many patients have a stem-cell or marrow transplant at the Seattle Cancer Care Alliance (SCCA) each year?
A: Approximately 400 patients have a transplant each year. About 150 have an autologous transplant using the patient's own stem or marrow cells, and the rest have an allogeneic transplant using cells from related or unrelated donors.
Q: How many patients in the Seattle program are currently receiving treatment before a transplant or are recovering after a transplant?
A: About 150 to 160 patients are in Seattle either getting ready for a transplant or recovering during the first several months after the procedure.
Q: At any one time, how many doctors take care of these transplant patients?
A: Patient care is directed by seven attending physicians, four in outpatient clinics at the SCCA, two at inpatient floors of the University of Washington Medical Center, and one at Children's Hospital and Regional Medical Center.
Q: At any one time, how many other people are involved in taking care of transplant patients?
A: Many people are involved. The list includes nurses, dieticians, physical therapists, consultant doctors, radiotherapists, pharmacists, chaplains, social workers, radiologists, pathologists, clinical care coordinators, clinic schedulers, receptionists, ward secretaries, laboratory workers and volunteers.
Q: How many patients who had a stem-cell or marrow transplant at the Hutch or SCCA are still living?
A: The total number of survivors increases each year and is now approaching 4,000.
Q: How do these patients get medical care after they leave the SCCA?
A: These patients get almost all of their medical care from their own doctors.
Q: How many doctors at the SCCA help in the care of patients who have had a transplant in the past?
A: Currently, this work is done by two physicians, one for adults and one for children. These doctors are called "LTFU attendings." About six doctors at the SCCA share this work.
Q: At any one time, how many others are involved in taking care of patients who have had a transplant in the past?
A: The LTFU attending physician works with three nurses and two nurse practitioners to answer questions from patients and their doctors. The LTFU attendings also work with visiting physicians, nurse practitioners, physician assistants and nurses to evaluate about 15 patients who are seen in the SCCA outpatient clinic each week.
Q: What proportion of patients needing a bone marrow/stem cell transplant from a donor have an unrelated donor identified from a registry?
A: Of patients needing a transplant using cells from someone else, only about 30 percent have an available match within their family. The remaining 70 percent of patients have to find a donor through a search in the network of donor registries. Luckily, for most patients, at least one good match will be found. In fact, approximately 95 percent of patients will find an acceptable match.
However, the chance of finding a match can be much lower for people of color. Because the human leukocyte antigens (HLA) used for determining a match are linked to ethnicity, patients are most likely to find a match within their own ethnic group. Unfortunately, the number of available donors in non-white ethnic groups is considerably smaller than in white ethnic groups. To improve the chance of finding a match for everyone, it is vitally important that registries include donors from all possible ethnic groups.
Q: How is a bone marrow match determined?
A: Matching a patient to a bone marrow/stem cell donor relies on testing of specific proteins on the surface of white blood cells called human leukocyte antigens (HLA). This is also called histocompatibility testing or tissue typing. These antigens play an important role in the body’s immune system by recognizing foreign cells.
Even with apparently “perfect” matching, differences between the patient and donor HLA molecules can provoke graft rejection or graft-vs.-host disease. These life-threatening complications must be controlled with immune suppressing medications until the recipient becomes tolerant of the donor cells and the donor cells become tolerant of the recipient.
Between 6 and 10 different antigens are tested for a stem cell transplant. The quality of the match is stated in terms of the number of antigens that match out of the number of possible matches, depending on the system used. A 6-out-of-6 (6/6) or 10-out-of-10 (10/10) match is the best. However, many successful transplants are done with 5/6 matches using donor marrow or stem cells or 4/6 matches using cord blood. Siblings have a 1 in 4 chance of having a 6/6 match because they inherited their HLA from the same parents. Finding a good match outside of the immediate family is much more difficult.
Tissue type test
Q: Can I contact my marrow donor?
A: Most marrow registries have a mechanism that allows patients and donors to contact each other if they wish to do so. If you were matched to a donor or patient registered with the NMDP, contact will be facilitated by the registry and transplant center no sooner than one year after the transplant.
Both parties will need to fill out a form stating that they wish to make contact. Fred Hutch/SCCA patients who wish to correspond with or meet their donor after the one-year waiting period may contact us to begin the process.
If the donor does not wish to make direct contact, patients may still send an anonymous card or letter, which will be forwarded to the donor by the registry. Rules regarding contact may differ for donors registered though other organizations, even if the match was facilitated through the NMDP.
Q: Are there organizations that provide emotional support to people after they've had a hematopoietic stem cell transplant?
A: Several organizations provide professional or peer counseling, matching interested survivors with others who need support. Volunteers are usually transplant survivors, caregivers or close family/friends of transplant survivors.
BMT Infonet matches those wishing to offer support with those who need it.
NBMT Link provides phone support. Call 800.546.5268 to arrange for a call from a trained peer counselor.
CancerCare provides online, telephone or face-to-face counseling by professional oncology social workers for cancer patients and their families.
Q: Are there online resources where HSCT survivors can interact with other survivors?
A: Many online resources exist to allow interaction on specific topics related to cancer or HSCT.
Q: Are there organizations that help transplant survivors with post-transplant medication costs?
A: Most pharmaceutical companies have programs to assist uninsured patients with free medications. The drug manufacturer's website usually has information about its program. For specific information, use the Medication search by brand name.
If you are not eligible for these programs or need additional assistance, organizations that provide financial aid can help. They usually help patients with specific diagnoses. Patients must review the eligibility requirements and services for each organization to find one that matches their circumstances.
Patient Access Network offers programs for underinsured patients to assist with out-of-pocket costs
The Healthwell Foundation provides assistance with insurance co-pays and premiums for patients with a variety of specific diagnoses.
The Leukemia and Lymphoma Society provides co-pay assistance to underinsured patients with specific diagnoses. Patients must be compliant with their medications to be eligible.
Q: Are there organizations that will help me locate financial assistance programs and apply for aid to pay for out-of-pocket medical costs?
A: Several organizations act as a clearinghouse for information on assistance programs but do not provide financial assistance themselves.
RxAssist maintains a comprehensive list of pharmaceutical assistance programs to provide medications. Generally, these programs are for patients without prescription coverage through an insurance provider.
Needymeds.com maintains a variety of resources, including co-pay assistance, discount cards, money-saving tips and other resources to assist patients in obtaining low- or no-cost medications.
Q: Where can I go for help if I'm having problems with my insurance coverage or with accessing health care after my transplant?
A: The Patient Advocate Foundation assists patients with insurance and health care access problems, and includes resources specific to HSCT patients.
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