Information for Patients

Clinical LTFU Leadership, Peer-to-Peer, Return to Work Survey

Information regarding COVID-19, late infections for transplant patients and sexual function.

Announcements regarding the Caresi app for former patients, survey analysis results and information about future research surveys.

Starting Summer 2018, a new secondary questionnaire focusing on cognition will be conducted. Also, for the first time study participants who completed the fatigue module from last year will receive personal results based on their responses.

This issue shares responses from 779 survey reponses from survivors on what both enhances their lives and disrupts their quality of life.

For over 20 years, patients have been submitting LTFU questionnaires. Many patients have offered comments at the end of their questionnaire. Taken together, the comments show a patchwork of experiences. We selected comments that we thought were interesting and informative. Please note that while we’ve removed identifying information, we didn’t edit the quotes for content.

Adult Patients

Pediatric Patients

GVHD Assessment Tips (Allogeneic patients only)

Adult Allogeneic Transplant Manual

Adult Autologous Transplant Manual

Pediatric Allogeneic Transplant Manual

Pediatric Autologous Transplant Manual

Oral Photography Instructions

Oral Photography Instructions - Video

Skin and Flexibility Photography

Common Infection Control Questions for Allogeneic Patients

Common Infection Control Questions for Autologous Patients
 

When you return home after your transplant, your immune system is still functioning below normal. You may also have increased nutrient needs due to medications or loss of muscle mass. Calories, protein, fluid, vitamins, and minerals are necessary for you to regain your immunity, maintain or achieve your weight goal, strengthen your muscles, and feel better!

Food Safety

• Allogeneic patients should continue the to follow diet guidelines for immunosuppressed patients until off all immunosuppressive therapy (such as prednisone, FK506, cyclosporine). Autologous patients should continue the diet during the first three months after transplant.
• When you discontinue the Diet Guidelines for Immunosuppressed Patients continue to use care when purchasing foods, preparing meals and dining out. Situations where you cannot control the cleanliness of the food put you at greater risk for acquiring a food-borne illness. Examples include salad bars, smorgasbords, delicatessens, bulk food bins, free food samples offered in stores. Review the Food Safety Guidelines in the Patient/Caregiver Manual.
• Continue to avoid herbal and other preparations, since they may contain harmful ingredients or infectious organisms. Herbs are not regulated for purity or for effect on health.
• If you rely on well water at home, have the water checked for purity at your local or county health department before using this water for drinking or food preparation. If you are unable to do this prior to moving home, you can boil the water at a full rolling boil for one minute prior to consumption or use in recipes. Boiled water may be stored up to three days in the refrigerator.

Calories and Body Weight

• Your goal is to maintain or achieve an appropriate weight for your body size.
• It is important to consume a nutritious diet including a variety of foods to promote recovery of your immune system.
• If you are underweight, weight gain may be slow after transplant. Set small goals (2-4 pounds or 1-2 kg per month). Don't skip meals or snacks. Drink beverages with calories and protein. Use supplements, such as Instant Breakfast®, Sustacal®, Ensure®, or Polycose®. Exercise to promote muscle gain.
• If you are overweight and medically stable (as determined by your physician and dietitian), you may choose to lose weight gradually - 1 pound/week. You must continue to eat a nutritious diet, following any special nutrition needs your dietitian has advised. Exercise is important prevent muscle loss.
• Calorie needs increase with fever, infection, and physical activity. Some people with Graft-versus-Host Disease (GVHD) may require more calories to maintain or gain weight.

Magnesium

• Cyclosporine and FK-506 increase magnesium loss from your body. Some people also lose magnesium due to other medications or after surgery, illness or autologous transplant. Supplementation (pill or intravenous infusion) is usually necessary. Your physician may need to adjust your magnesium dose based on your serum magnesium level.
• Magnesium-rich foods include nuts, bran cereals, brown rice and whole grain breads.

Fluid

• A high fluid intake helps flush your kidneys when you take medications that can impair kidney function, including Cyclosporine, FK-506, and some antibiotics.
• Serum (blood) Creatinine is a measure of kidney function. An above normal serum creatinine means that your kidneys are working below normal.

Blood Lipid Levels

Serum cholesterol and triglyceride levels can change after transplant due to medications including Cyclosporine and prednisone. If your cholesterol and triglyceride levels are elevated after transplant, have them remeasured two to three months after immunosuppressive drugs (Cyclosporine, prednisone, FK-506) are discontinued.

Vitamin and Mineral Supplements

Take a multiple vitamin/mineral supplement for one year following your transplant to ensure you get the vitamins and minerals you need while your body and immune system are recovering. A generic brand is fine. If you are considering taking any supplement (including antioxidants and herbal preparations) in addition to the vitamin/mineral supplement that has been recommended, discuss its' safety with your Fred Hutch dietitian.

When selecting a supplement, it should:

• Contain NO iron.
• Not be greater than 200% of the Recommended Dietary Allowance (RDA)
• Contain NO herbs or other plant materials.

Recommended Supplements For Adults

Mature Balance, One-a-Day 55 Plus

Protein

Your protein needs were higher than normal early after transplant to allow repair of cell damage caused by chemotherapy and radiation. Protein continues to be an important part of your diet to promote recovery of your immune system. Your protein requirement returns to normal two to three months after transplant, unless you have lost a large amount of muscle or are taking prednisone. Protein-rich foods are listed below. Your dietitian will tell you your daily requirement.

Protein Content of Selected Foods

Calcium and Vitamin D

Calcium is essential for bone health, especially in:

• Adult females with hormonal changes
• Children and teens
• People taking prednisone

Vitamin D is needed for calcium absorption and transport to the bones. Food sources include fortified milk (100 IU/8 ounces); canned tuna and salmon (200-300 IU/3 ounces).

Calcium and Vitamin D Requirements after Transplant

Choosing a calcium supplement

If you are not able to get the amount of calcium you require from foods, you should take a calcium supplement. Choose a supplement with vitamin D if your intake of vitamin D from food and your multiple vitamin supplement does not meet your requirement.

There are two main types of calcium supplements: calcium citrate and calcium carbonate. The following table shows the differences between these supplements and the best time to take them. Note: if you are taking a prescription to decrease stomach acid or use antacids on a daily basis, calcium citrate is recommended (instead of calcium carbonate).

Calcium Content of Selected Foods

Nutrition Guidelines During Prednisone Treatment

• Protein: A protein-rich diet and exercise can help prevent muscle loss. Include a protein-rich food in every meal and consume 2 to 3 protein-rich beverages or snacks daily. Exercise can include walking, bicycling, low-impact aerobics.
• Calcium: Consume a calcium-rich diet and exercise daily to minimize bone loss. If your calcium intake is low, take a supplement of calcium carbonate (such as Tums) or calcium citrate (such as Citracal).
• Sugar (carbohydrate, glucose): If your blood glucose level is above normal, discuss with your dietitian or doctor whether dietary changes or insulin therapy are needed. You may be able to improve your blood glucose levels by avoiding sugar-containing beverages and fruit juices, and being careful to avoid eating more energy (calories) than your body needs.
• Potassium: You may need more potassium in your diet while taking prednisone. The following are good sources of potassium: bananas, oranges and orange juice, canteloupe, Instant Breakfast, beans (chili, kidney, refried, etc.), potatoes, Sustacal, Boost, tomatoes, tomato juice, V-8, winter squash, ScandiShake (Your dietitian can give you a more complete list.)
• Salt: A high salt intake can worsen fluid retention caused by prednisone. Avoid salt and salty foods such as canned, instant, and frozen soups and entrees, soy sauce, cured meats, and packaged sauces and seasonings. In general, processed foods contain too much salt.

Discuss With Your Doctor If:

• Your weight drops more than 2 pounds (1 kg) in 7 days
• You develop nausea, vomiting, diarrhea, stomach or intestinal cramps
• Your mouth becomes drier, sensitive, or develops sores
• You have swallowing difficulties

When you return home after your transplant, your immune system is still functioning below normal. You may also have increased nutrient needs due to medications or loss of muscle mass. Calories, protein, fluid, vitamins, and minerals are necessary for you to regain your immunity, maintain or achieve your weight goal, strengthen your muscles, and feel better!

Food Safety

• Allogeneic patients should continue the immunosuppressed patient diet until off all immunosuppressive therapy (such as prednisone, FK506, cyclosporine). Autologous patients should continue the diet during the first three months after transplant.
• When you discontinue the Immunosuppressed Patient Diet continue to use care when purchasing foods, preparing meals and dining out. Situations where you cannot control the cleanliness of the food put you at greater risk for acquiring a food-borne illness. Examples include salad bars, smorgasbords, delicatessens, bulk food bins, free food samples offered in stores. Review the Food Safety Guidelines in the Patient/Caregiver Manual.
• Continue to avoid herbal and other preparations, since they may contain harmful ingredients or infectious organisms. Herbs are not regulated for purity or for effect on health.
• If you rely on well water at home, have the water checked for purity at your local or county health department before using this water for drinking or food preparation. If you are unable to do this prior to moving home, you can boil the water at a full rolling boil for one minute prior to consumption or use in recipes. Boiled water may be stored up to three days in the refrigerator.

Calories and Body Weight

• Your goal is to maintain or achieve an appropriate weight for your body size.
• It is important to consume a nutritious diet including a variety of foods to promote recovery of your immune system.
• If you are underweight, weight gain may be slow after transplant. Set small goals (2-4 pounds or 1-2 kg per month). Don't skip meals or snacks. Drink beverages with calories and protein. Use supplements, such as Instant Breakfast®, Sustacal®, Ensure®, or Polycose®. Exercise to promote muscle gain.
• If you are overweight and medically stable (as determined by your physician and dietitian), you may choose to lose weight gradually - 1 pound/week. You must continue to eat a nutritious diet, following any special nutrition needs your dietitian has advised. Exercise is important prevent muscle loss.
• Calorie needs increase with fever, infection, and physical activity. Some people with Graft-versus-Host Disease (GVHD) may require more calories to maintain or gain weight.

Monitoring Height and Weight

Height and weight should be measured at your doctor's office: every month for pre-pubertal children or every three months following puberty. Record these values on the growth chart provided by your dietitian. When your child returns to Seattle for long-term evaluation, bring the growth chart with you.

Magnesium

• Cyclosporine and FK-506 increase magnesium loss from your body. Some people also lose magnesium due to other medications or after surgery, illness or autologous transplant. Supplementation (pill or intravenous infusion) is usually necessary. Your physician may need to adjust your magnesium dose based on your serum magnesium level.
• Magnesium-rich foods include nuts, bran cereals, brown rice and whole grain breads.

Fluid

• A high fluid intake helps flush your kidneys when you take medications that can impair kidney function, including Cyclosporine, FK-506, and some antibiotics.
• Serum (blood) Creatinine is a measure of kidney function. An above normal serum creatinine means that your kidneys are working below normal.

Blood Lipid Levels

Serum cholesterol and triglyceride levels can change after transplant due to medications including Cyclosporine and prednisone. If your cholesterol and triglyceride levels are elevated after transplant, have them remeasured two to three months after immunosuppressive drugs (Cyclosporine, prednisone, FK-506) are discontinued.

Normal Cholesterol and Triglyceride Ranges

Vitamin and Mineral Supplements

Take a multiple vitamin/mineral supplement for one year following your transplant to ensure you get the vitamins and minerals you need while your body and immune system are recovering. A generic brand is fine. If you are considering taking any supplement (including antioxidants and herbal preparations) in addition to the vitamin/mineral supplement that has been recommended, discuss its' safety with your Fred Hutch dietitian.

When selecting a supplement, it should:

• Contain NO iron.
• Not be greater than 200% of the Recommended Dietary Allowance (RDA)
• Contain NO herbs or other plant materials.

Recommended Supplements:

Children under 10 years: Fruity Chews, Sesame Street Vitamin Chewable Tablets (Follow the dose listed on the label for the age of your child.)
Children 10 years or older: Mature Balance, One-a-Day 55 Plus

Protein

Your protein needs were higher than normal early after transplant to allow repair of cell damage caused by chemotherapy and radiation. Protein continues to be an important part of your diet to promote recovery of your immune system. Your protein requirement returns to normal two to three months after transplant, unless you have lost a large amount of muscle or are taking prednisone. Protein-rich foods are listed below. Your dietitian will tell you your daily requirement.

Protein Content of Selected Foods

Calcium and Vitamin D

Calcium is essential for bone health, especially in:

• Adult females with hormonal changes
• Children and teens
• People taking prednisone

Vitamin D is needed for calcium absorption and transport to the bones. Food sources include fortified milk (100 IU/8 ounces); canned tuna and salmon (200-300 IU/3 ounces), fortified cereals (40-80 IU/serving), Carnation breakfast bars (100 IU/bar).

Calcium and Vitamin D Requirements after Transplant

Choosing a calcium supplement

If you are not able to get the amount of calcium you require from foods, you should take a calcium supplement. Choose a supplement with vitamin D if your intake of vitamin D from food and your multiple vitamin supplement does not meet your requirement.

There are two main types of calcium supplements: calcium citrate and calcium carbonate. The following table shows the differences between these supplements and the best time to take them. Note: if you are taking a prescription to decrease stomach acid or use antacids on a daily basis, calcium citrate is recommended (instead of calcium carbonate).

Calcium Content of Selected Foods

Nutrition Guidelines During Prednisone Treatment

• Protein: A protein-rich diet and exercise can help prevent muscle loss. Include a protein-rich food in every meal and consume 2 to 3 protein-rich beverages or snacks daily. Exercise can include walking, bicycling, low-impact aerobics.
• Calcium: Consume a calcium-rich diet and exercise daily to minimize bone loss. If your calcium intake is low, take a supplement of calcium carbonate (such as Tums) or calcium citrate (such as Citracal).
• Sugar (carbohydrate, glucose): If your blood glucose level is above normal, discuss with your dietitian or doctor whether dietary changes or insulin therapy are needed. You may be able to improve your blood glucose levels by avoiding sugar-containing beverages and fruit juices, and being careful to avoid eating more energy (calories) than your body needs.
• Potassium: You may need more potassium in your diet while taking prednisone. The following are good sources of potassium: bananas, oranges and orange juice, canteloupe, Instant Breakfast, beans (chili, kidney, refried, etc.), potatoes, Sustacal, Boost, tomatoes, tomato juice, V-8, winter squash, ScandiShake (Your dietitian can give you a more complete list.)
• Salt: A high salt intake can worsen fluid retention caused by prednisone. Avoid salt and salty foods such as canned, instant, and frozen soups and entrees, soy sauce, cured meats, and packaged sauces and seasonings. In general, processed foods contain too much salt.

Discuss With Your Doctor If:

• Your weight drops more than 2 pounds (1 kg) in 7 days
• You develop nausea, vomiting, diarrhea, stomach or intestinal cramps
• Your mouth becomes drier, sensitive, or develops sores
• You have swallowing difficulties

Herbal and Nutritional Supplements

Immunosuppressed Patients