Returning home following a blood stem cell or bone marrow transplant is a very special time for you and your family. Anticipating going home can be exciting. But, after having spent many weeks hospitalized in an isolated environment, you may also be worried. This is a natural feeling shared by most patients who have had a transplant.

Some people are ready to leave the hospital as soon as possible. Many others are fearful of being away from the security of a hospital setting. Family members, too, may be concerned with the responsibility of caring for their loved ones without the constant presence of hospital staff. Please be assured that these concerns are shared by many. Feeling confident and comfortable at home is a process that takes time.

Resuming your home life means becoming accustomed to living together as a family again. The need for continued precautions in the months following transplantation may add stress to your family life. You may find that family members, especially children, show their frustrations and jealousy toward you during this time. Couples may feel awkward together following the period of separation that comes after a transplant. Those who have gone through these experiences advise that you remain as calm and confident as you can while you and your family try to regain a sense of balance and comfort.

Remember, this is a time of convalescence and recovery. You and your family may expect that you are going to feel and behave as you did before the onset of your illness and the beginning of your treatment. This will not happen immediately. Many patients have feelings of fatigue, weakness, and a decreased appetite. It will take some time to regain your strength and ability to participate in daily activities.

Preventing Potential Medical Problems
Once you have been discharged, you will have regular and frequent check-ups with members of the transplant team to see how you are doing. There are special guidelines that you and your family will need to follow in order to avoid problems. Below we will review potential problems, offer guidelines for preventing them, and give suggestions for managing them, should they occur. Please remember that these are guidelines only. Though we have tried to standardize certain precautions, each patient recovers differently from his/her transplant, so discharge instructions vary from patient to patient.

Infection
During the first year after your transplant, your body will be less able to fight infections, because your immune system will still be maturing. For this reason, bacterial, fungal, and viral infections may be a problem.

The staff of the Blood and Marrow Stem Cell Transplantation Program will monitor the development of your immune system with periodic blood tests done at your referring oncologist's office for the first year after your discharge. Such careful monitoring will enable us to respond promptly to any problems that may occur. Your engrafted blood stem cells have the ability to meet most of the challenges of everyday life. However, since infection is possible, it is important to be aware of the signs and symptoms of an infection. Should you develop any of the symptoms listed below, call your doctor promptly:

• Fever of 101oF: You should take and record your temperature every morning and evening for two weeks and at any other time you do not feel well. Do not take any Tylenol (acetaminophen) until your doctor tells you to do so. It is important to record, along with your temperature, what time you took the Tylenol.
• Coughing, sneezing, runny nose, shortness of breath, or chest discomfort: It is especially important to notify your doctor of a persistent or nagging cough, since this may be an early sign of a lung infection.
• Redness and/or swelling at, or above, the exit site of your central venous catheter
• Flushed appearance of the skin, sweating, or shaking chills
• Redness, swelling, and/or pain in your throat, eyes, ears, skin, joints, or abdomen
• Blurring of vision or other changes in your ability to see clearly
• Frequent urination and/or burning on urination
• Difficulty flushing your central venous catheter or any chilling associated with flushing the catheter
• Rectal pain, initially a stinging or irritated sensation, which may progress to a severe, sharp, or throbbing pain when you pass stool
• Small blisters, similar to cold sores, around your mouth or on any other part of your body

Graft-Versus-Host Disease
Graft-versus-host disease (GVHD) is a dangerous, potentially fatal side effect that can occur after allogeneic stem cell transplantation. It occurs when T cells – a type of disease-fighting white blood cell – that are transferred along with the donated stem cells stage an immune response to the “foreign” antigens expressed on tissues of most organs in the patient’s body. The T cells attack the patient’s body. GVHD mainly affects the skin, gastrointestinal tract, liver, eyes, and oral mucosa. Symptoms reflect which area of the body is affected:

• the skin: a rash or itchiness of the chest, upper back, trunk, palms, and soles of the feet
• the gastrointestinal tract: prolonged diarrhea, anorexia, nausea, vomiting
• the liver: yellowing of the skin and whites of the eyes (jaundice), increased liver enzymes
• eyes: severe dryness of the eyes, problems with the retina
• oral mucosa: ulcerations in the mouth 

To guard against GVHD, you will be given prophylactic immunosuppressive medications (called immunosuppressants or steroids) before your transplant and after. These medications suppress the immune response and can include tacrolimus (Prograf), cyclosporine, and low doses of methotrexate. Should you develop GVHD, the primary therapy is to adjust the dosages of tacrolimus or cyclosporine to reduce the immune response or to add methylprednisolone, another immunosuppressant to your medications. Anti-Thymocyte Globulin (ATG)  may be given before the transplant or after discharge from the hospital. Secondary treatments include the immunosuppressant pentostatin or monoclonal antibodies for patients whose GVHD does not respond to steroids.

Changes in the dosages of immunosuppressants should improve symptoms of GVHD. Other therapies may include a special GVHD diet to reduce inflammation in the gastrointestinal tract or eye solutions to add moisture to the eyes. You should visit an ophthalmologist, a specialist in diseases of the eye, to check for problems with your retinas.   

At The Cancer Center, basic science researchers Robert Korngold, Ph.D., and Thea M. Friedman, Ph.D., are among the leading researchers in the country in GVHD. They are conducting studies to learn more about the basic biology of GVHD and what can be done to eliminate or diminish the risk of GVHD in stem cell transplant patients. Our researchers are responsible for some of the major discoveries in this field in the past 25 years, including the fact that T cells cause GVHD. This groundbreaking research and other studies have led to improvements in the stem cell transplantation process. Their research is funded by the National Institutes of Health’s National Institute for Allergy and Infectious Diseases and its National Heart, Lung, and Institute and the Multiple Myeloma Research Foundation. 

An innovative therapy for GVHD is under investigation in clinical trials by Michele L. Donato, M.D., medical director of the blood and marrow collection facility. Dr. Donato is studying the use of photopheresis to treat autoimmune disorders, including GVHD in patients who have undergone stem cell transplantation. Photopheresis involves isolating T cells from the patient’s body, treating them with medications, and then exposing them to ultraviolet light. These engineered T cells are then reinfused back into the patient’s body. The treated T cells temper the immune system, without weakening it, and prevent it from being too aggressive toward the donated stem cells.    

Personal Hygiene
In the first several months after transplant, you will need to follow these precautions to decrease your chance of developing an infection:

Bathing
Personal hygiene plays an important role in preventing infections. Hand washing, especially in public places, is crucial. If you are discharged while your absolute neutrophil count (ANC) is still below 1,000/mm3 (referred to as 1.0) you need to continue taking baths or showers with the antibacterial soap solution. This may be done once daily. When your ANC is above 1,000/mm3, you may begin using a mild, non-deodorant soap in place of the antibacterial soap. If your skin is dry, we suggest using a moisturizing soap, such as Caress, Dove, or Tone.

Continue to pay careful attention to your underarms, groin, and breast skin folds while washing. You may apply baby oil or a skin moisturizer after your bath. However, avoid putting oil or moisturizer on the skin fold areas. Also, avoid lotions containing alcohol, as they may increase dryness. Preferably, underarm deodorants and body powders should be avoided for one to three months following the transplant, as these can trap bacteria, prevent the skin from "breathing," and promote infection. Do not share towels or washcloths with other members of your household. If you still have your central venous catheter when you go home, do not allow the catheter to soak in water while taking a bath.

Oral Hygiene
When your platelet count is below 50,000/mm3, you are still at some risk for bleeding. For this reason, you will need to continue using the foam sticks you have used in the hospital. You are permitted to use these with toothpaste, as long as you have no mouth sores. When your platelet count rises above 50,000/mm3, and if your white blood cell (WBC) count is 1,000/mm3 or higher and you have no mouth sores, you can brush your teeth with a soft nylon toothbrush with toothpaste. Adolescents and adults should also begin to floss between their teeth daily at this time. If you have questions, ask your doctor or nurse.

To help prevent an infection from developing in your mouth, your doctor may have you continue to use an oral antifungal antibiotic at home. Mycostatin (Mystatin), a yellow liquid medication, and Mycelex Troche, a lozenge, are such medications, which you may have used during your hospitalization. After cleaning your mouth and teeth with either a foam stick or toothbrush (as above), swish the Mycostatin in your mouth for two minutes and then swallow it. If you are to use the Mycelex Troche lozenges, allow them to dissolve in your mouth. Do not eat or drink for 20 minutes after taking either medication.

If you wear dentures, it is very important to keep them clean. They should be soaked every day for half an hour in any conventional denture cleaner, and then rinsed thoroughly with tap water for at least five minutes. This should prevent them from harboring fungus. If Mycostatin is a part of your oral hygiene, remove your dentures before using it. This will enhance the effectiveness of Mycostatin and prevent reinfection of your mouth tissues.

Persistent dryness of the mouth is another problem you may have. This may be due either to radiation treatments or to some chemotherapy agents. Avoid commercial mouthwashes and hydrogen peroxide, because they tend to dry and irritate the mucous membranes of the mouth. Instead, use saline-bicarbonate rinses (1/2 teaspoon salt and 1/2 teaspoon baking soda mixed in an eight-ounce glass of water) or other rinses prescribed by the dentist. There are a number of oral lubricants (artificial saliva) that can also help. Talk with your dentist about which brand is best for you. Sucking on sugarless candy or lozenges may also be helpful.

If you have received total body irradiation prior to your transplant, your salivary glands may be less effective than before at washing bacteria from your mouth. You may, therefore, be more prone to developing cavities. For this reason, fluoride treatments may be included as part of your oral hygiene regimen, and your doctor or nurse will review this with you.

Fluoride treatment varies according to age. Current recommendations are to use a fluoride rinse or mouth guard with 1.0% neutral pH fluoride (the usual prescription form of this fluoride is Thera-Flur-N).  If a custom dental mouth guard has been made for you, you will need to place fluoride drops in each toothspace of your mouth guard. You should leave the mouth guard with the fluoride on your teeth overnight. Do not rinse your mouth or eat for one hour after the fluoride treatment. You may need to use the mouth guard with fluoride treatment indefinitely unless your dentist or physician advises you that it is no longer necessary.

Central Venous Catheter Care
If you go home with your central venous catheter, the cleanliness of your catheter continues to be as important after discharge as it was before and during your hospitalization. Do not remove the dressing at home by yourself. You will be notified of your maintenance schedule. Arrangements for this care and the necessary supplies will be made by your transplant nurses at The Cancer Center. As central venous catheters frequently get infected during the post-transplant phase, your transplant physician will plan to remove your catheter as soon as you no longer need it for transfusions and infusions.

Home Environment
It is important to keep your home reasonably free of dirt and dust. Before you return home, have any window-mounted air conditioning units cleaned to remove dust and debris. Although you do not have to go to extremes, you should keep your bathroom (especially the bathtub and toilet) clean by regularly using a disinfectant, such as ammonia or bleach.

Because you can develop infections easily, it is best to avoid doing housework during the first few months after discharge. If possible, you should make arrangements for someone else to do the housework when you get home from the hospital.

To prevent the transfer of germs from others to you, it is important that linens and eating utensils be carefully cleaned. Remember to wash all forks, spoons, and knives thoroughly with hot water and dishwashing detergent. Bed linens should be laundered and changed once a week. You should use only your own towels and washcloths, and they should be laundered and changed twice weekly. Do not share towels and washcloths with other family members.

Household plants may remain in your home, however, you should avoid handling the water and soil from household plants and flowers for the first few months after your transplant because soil and standing water in the pots often harbor bacteria. Water in a vase of cut flowers may also contain bacteria.

Pets
Some animals carry diseases that can be transmitted to humans. To avoid infection, you should not clean cat litter boxes, bird or other pet cages, fish bowls, or turtle tanks for 12 to 18 months after your transplant. You may pet your house pet, but it is best to avoid close physical contact. In particular, do not touch the animal's saliva or feces. Contact with barnyard animals is discouraged for the first nine to 12 months.

Family and Visitors
Try to avoid close physical contact with anyone living in your home who has a cold. For additional protection, you may want to wear a mask when you are both in the same room. You may certainly have visitors, but limit them to small groups of two or three people at a time. Anyone who has a cold or chicken pox, or has recently been exposed to chicken pox, herpes, "shingles," or any other type of virus or infection, should not visit you. Keep in mind, however, that a person who has already had chicken pox cannot transfer the chicken pox virus to you. If you or a family member is accidentally exposed to a person with chicken pox, "shingles," measles, or German measles, call your doctor immediately.

If you are exposed to chicken pox, it may be important that you receive varicella zoster immune globulin (VZIG), which contains antibodies to the chicken pox virus. The VZIG antibody works best when given within four days after exposure to the virus. If given immediately after exposure, it will either prevent infection or limit its severity. If you have any questions about a certain illness, please call your doctor.

Outside Your Home
During the first month (for blood stem cell recipients) or three months (for bone marrow recipients) after your transplant, you should avoid crowded places such as supermarkets, shopping malls, movie theaters, schools, restaurants, and public transportation. For your protection during the first month (for blood stem cell recipients) or three months (for bone marrow recipients) after your transplant, any time you are in a crowded area you will need to wear a mask covering your nose and mouth. This means when you come into the physician's office for your follow-up exams, you must wear a mask until you are brought into a private exam room. You should also wear a mask when you are around sick people.

It is important for you to continue the exercise program established for you during your hospitalization. Walking both indoors and outdoors is an excellent way to rebuild your overall strength and endurance. You do not have to wear a mask outdoors unless you are surrounded by a crowd.

You should avoid overexposure to direct sunlight, because your skin will be more sensitive after radiation, chemotherapy, and certain post-transplant medications. Prolonged exposure to the sun may also activate a viral infection. Use a strong sunscreen - sun protection factor #15 or greater - if you will be in direct sunlight for 20 minutes or longer.

To control infection, it is best to avoid swimming in lakes or crowded pools for at least six months after your transplant. While you have a central venous catheter, you should not go swimming. After you regain your strength and increase your activity, you may swim in the ocean or in an uncrowded, chlorinated private pool as long as you no longer have a central venous catheter.

As you continue to recover, there will be fewer and fewer limitations on activities. On follow-up visits, your doctor/clinician will watch your progress closely and will let you know when you can return to your former activity and hygiene routines.

Bleeding
Platelets may be the last type of blood cell to start growing in your new bone marrow. Platelets are very important, because they help form clots that control bleeding. When your platelet count is low, bleeding is a potential problem. Most patients leave the hospital with a low platelet count, and it may take weeks or months for the new marrow to produce normal numbers of platelets. During this time, you may require irradiated platelet transfusions as an outpatient.

Signs of a low platelet count include changes in the skin and/or bleeding. Skin changes may include excessive bruising or petechiae (tiny, pinpoint, purplish-red spots on the skin). When you first leave the hospital and increase your activity, you may notice some petechiae on your lower legs. This is not unusual. However, if you notice many petechiae, notify your doctor. Other symptoms of a low platelet count include bleeding from the gums, nose, urine, or stool. The presence of blood in your stool may cause it to be red or black in color.

If you have been discharged with any of these symptoms and they increase in amount or frequency, please let your doctor know. If you have not had any of these symptoms, and you suddenly develop them, let your doctor know, as this may mean that there has been a drop in your platelet count.

If you have an injury that causes bleeding, you may feel frightened. It is important to remain calm and remember these first aid principles:

• Open wounds: Put a clean, dry gauze pad, towel, or cloth over the cut and press firmly. Continue applying pressure until the bleeding stops. If the bleeding continues, elevate the wound (for example, raise your arm or prop up your feet), apply ice, and notify your doctor.
• Nose bleeds: If your nose should bleed, sit down and lean slightly forward. Squeeze the bridge of your nose between your thumb and forefinger. Do this for at least 10 minutes without letting go. If the bleeding persists, continue to squeeze your nose. Apply a small bag of ice to the bridge of your nose until the bleeding stops. If the bleeding continues longer than one half-hour, notify your doctor.
• Accidents: If you should be in an accident and require blood or blood products, they must first be irradiated to prevent a graft-versus-host (GVH) reaction in you. If you are hospitalized in another hospital, have the physician call your transplant doctor at Hackensack University Medical Center immediately about the use of irradiated blood products.

If your platelet count is below 50,000, you should continue to take precautions that were in effect during your hospitalization:

• Use an electric razor when shaving.
• Avoid driving and if possible avoid sitting in front seat of cars that have passenger air bags.
• Use soft foam sticks or a Water Pik to prevent gum bleeding.
• Do not use dental floss.
• Avoid blowing your nose forcefully.
• If you are constipated, notify your doctor. You may need more fiber in your diet or a prescription for a stool softener.
• Avoid activities or sports that can cause injury from colliding or straining, such as horseback riding, weight lifting, skiing, and contact sports. Speak to your doctor before resuming any sports or strenuous activity.
• Avoid sexual activity.

Female transplant patients who have begun taking oral contraceptives/hormonal therapy to prevent vaginal uterine bleeding will need to continue taking this medication until their platelet count reaches 50,000/mm3, unless otherwise directed.

Relapse
Since a relapse of your original disease is a possibility after transplant treatments, periodic evaluations of your blood and bone marrow and previous site(s) of disease will be done to closely monitor both the durability of your graft and signs of relapse of your prior disease.

Regaining Your Strength
Recovery after transplant varies from person to person. You may find that it takes only as long as your hospitalization, or you may find that it takes many months. The period following your transplant is a time of cell recovery and growth of the new marrow and regrowth of the cells in your mouth, stomach, intestine, hair, and muscles. This growth requires calories and energy, and may explain why you feel much more tired than you anticipated. Remember, this tiredness is normal and to be expected. Each week you should feel stronger.

About the third month after transplant, your hair and nails will start growing quickly. These are the most obvious signs of cell recovery. Your hair may grow in a different color and character. Your nails will show a line of demarcation across the nail bed from chemotherapy, with all nail growth thereafter signifying new tissue growth. This line will eventually grow out.

By this time, you will probably be feeling well enough to begin resuming your previous level of activity. With your doctor's approval, limits on your activities will be gradually relaxed. From this point on, you should be feeling progressively better. However, keep in mind that most people find that the first six months to one year after transplant are a time of recovery.

Exercise
Most people find it takes quite a bit of time to regain their strength. After reviewing your platelet counts, your doctor and nurse will suggest which exercises are best. When you begin to exercise, you should start with easy exercises. Later with your doctor's approval, progress slowly to more involved and vigorous ones. Weight lifting, contact sports, and skiing should be avoided until your platelet count is over 100,000/mm3. Remember, your hospital stay has been lengthy and it will take time for you to feel like yourself again.

Hobbies
If your hobbies include woodworking, painting, or modeling, you should use non-toxic paints and/or glues in a well-ventilated room. Avoid using potentially toxic products (like benzene, gasoline, pesticides, solvents, fertilizers, carbon tetrachloride, and paints or cleaners that contain these agents), since they can depress your blood counts and irritate your lungs.

Returning to Work
Your doctor will tell you when it is advisable to return to work or school. Some people may feel ready to return very quickly. There are many, however, who feel apprehensive after being away from friends, employers, and the demands of school or a job for so long. It may be helpful to begin gradually (for example, half days or three days a week). Many people have told us that the anticipation is more difficult than the actual event. The sooner you can return to work or school, the easier the transition may be for you.

Some former patients have talked about feeling embarrassed by changes in their appearance, particularly hair loss. Others have difficulty concentrating, maintaining their attention span, or keeping their former pace. Making the transition from patient back to a well person can be hard. The social workers, oncology counselors, nurses, and transplant team members are available to talk with you about your readjustment to work.

Sexuality
After receiving high-dose chemotherapy and/or radiation therapy, it is normal for you to have concerns about resuming your previous sexual activities. Touching, hugging, kissing, and more intimate sexual activities may be resumed after discharge with only a few minor restrictions. Through our discussions with former patients, we have identified some common concerns and issues that may emerge for individuals and couples after transplantation.  

The physical changes that some women experience include decreased or absent menstrual periods and decreased vaginal secretions. Lubricants can be used to relieve vaginal dryness. After undergoing high-dose chemotherapy, women experience changes in ovarian function that result in decreased hormonal (estrogen) levels. For this reason, estrogen supplements may be recommended after transplantation. We recommend that all women patients be seen periodically by a gynecologist, who can consult with your transplant doctor.  

Men may notice a temporary decrease in sexual desire. This is related to a decrease in hormonal (testosterone) levels and will resolve as hormonal levels return to normal. Follow-up visits provide a time for discussing sexuality with your doctor.

Both adult men and women patients are usually sterile (unable to conceive children) after Cytoxan treatment and/or total body irradiation, especially if they received transplant treatments after puberty. However, do not automatically assume that you will never need to use contraception, since fertility sometimes returns.

Hugging, touching, and kissing may be resumed at any time after discharge. Patients are instructed to refrain from sexual intercourse until their platelet counts are 50,000/mm3 or greater to minimize any risk of bleeding or bruising of the genitalia. Oral sex also should be avoided while the platelet count is below 50,000/mm3 and the absolute neutrophil count (ANC) is below 1,000/mm3.  In addition, to reduce the risk of infection, condoms must be used during the first three months after discharge from the hospital. Lastly, the number of sexual partners should be limited to one during the first nine to 12 months after discharge.

It is important to remember that while high-dose chemotherapy may affect your ability to have children, it should not affect your ability to enjoy sexual activity after your transplant treatment. The stress related to your hospitalization and the fatigue you experience upon discharge may, however, have an initial impact on your sexual relationship. As you begin to increase your activity and regain your strength and endurance, you may find that your desire to become more sexually active increases as well.

Prior to going home, you should discuss with your doctor any questions you may have about resuming sexual activity. It is important for both you and your partner to have these issues clarified. Additional information can be obtained during your follow-up visits.

Nutrition
To regain your healthy immune system, maintain or gain weight, and feel better, you will need calories, protein, minerals, and vitamins. Following your discharge from the hospital, you may notice some changes that may interfere with your plan for good nutrition. These include decreased appetite, taste changes, mouth sores, dry mouth, and/or diarrhea. Many of these problems will improve over time. The following information can be helpful for dealing with these problems. A hospital dietitian will also be available to discuss any dietary concerns you may have.

Food Selection
After the stress of hospitalization and transplant therapy, you need to maintain your recovery by eating a healthy diet. If you have ongoing nutritional problems or concerns, remember to discuss them during your follow-up visits.

Having recently left the protective environment of the hospital, it is important for you to protect yourself from eating foods that are contaminated or that contain large amounts of bacteria. Please follow these instructions:

• Unpasteurized dairy products generally have a high bacterial content and should be avoided. Packaged, pasteurized yogurts and cheeses from the grocery store are acceptable.
• As during your hospitalization, while your ANC is below 1,000/mm3, you are not permitted to eat raw or undercooked poultry, eggs, shellfish, tofu, hot dogs, or breakfast sausage. Seasonings are not permitted to be added after the cooking process, except salt. Smooth raw fruits (apples, pears) and smooth raw vegetables (zucchini, cucumbers) are permitted if thoroughly washed or peeled.
• Initially, you should consider both how your food is being prepared and who is preparing it. Your food should not be prepared by anyone who has an infection. It is best not to eat food from restaurants for the first month (blood stem cell recipients) or three months (bone marrow recipients) after your transplant. Thereafter, make sure you go to high-quality restaurants and that their food preparers are supervised and take proper food-preparation safety precautions, such as wearing gloves and covering their hair. Pay attention and use discretion when eating out or buying prepared food.

Appetite Changes
Many patients experience a decrease in appetite. Inadequate nutrition can limit the growth of your new marrow or prevent you from gaining weight or growing. If you have a decreased appetite, the best way to meet nutritional needs is to eat small and frequent meals or to snack on "mini-meals" six to eight times a day. Your appetite will improve as salivary function, smell, and taste return.

Taste Changes
Many patients say that food does not taste the same as it did before their transplant. Some people notice a metallic taste. This will resolve with time. Eating lemons, other tart fruits, or fruit-flavored sourballs may decrease the effect of the metallic taste.

Thoroughly cleansing your mouth before eating may also help make food taste better. If you notice that certain foods now taste different, omit the ones that you find disagreeable. If your ability to taste is diminished, or foods do not taste as distinctive or sharp as before, try using strong flavorings that appeal to you - such as cooking wine, salad dressings, or very strong seasonings to help provide food with a more pleasant flavor.

If sauces and marinades do not enhance the flavor of meats enough, other foods that are also high in protein can be substituted for red meat. Chicken and turkey can be used in a variety of ways, providing lots of options. Eggs, fish, and high-protein puddings provide high nutritional content and protein in small portions. Custards, peanut butter, ice cream, yogurt, peas, beans, and nuts are also good sources of protein, as is macaroni and cheese. If the food smells good to you, it will taste better.

Dry Mouth
If you experience a dry mouth, eat soft foods with gravies, sauces, dressings, broths, sour cream, or mayonnaise to make them moist and easy to swallow. Artificial saliva, purchased in the drugstore, may also be used to relieve dryness. Ask your doctor, dentist, or nurse about using it.

Sugar-free gum or ice chips are also helpful for keeping your mouth moist. Cold foods often feel better than warm or hot foods, if you have a dry mouth. Dunking dry foods, such as bread or bread products, into soups or beverages to moisten them may also help. Highly nutritious liquids like blenderized complete nutritional liquid drinks (for example, Ensure, Sustacal, or Carnation Instant Breakfast) may help when your mouth is dry.

Sensitive Mouth
Some people find that eating is difficult because their tongue, mouth, or throat is very sensitive. If you have ulcerations or mouth sores, avoid foods that are very spicy, salty, or high in acid - such as tomatoes, oranges, or grapefruits - because these are irritating to the lining of the mouth and throat. Cigarettes and excessive use of alcohol are also irritating and should be avoided.

If you have mouth sores or problems with chewing and swallowing, the consistency of your food may have to be modified. Food should be soft, moist, and either cut into small pieces or pureed. Drinking high-calorie beverages such as milk shakes, eggnog, and complete nutritional formulas is a good way to meet nutritional requirements without irritating your mouth.

Other foods that may be soft and easy to swallow are thick soups, eggs, flaked fish, soft-cooked pastas, and dairy products. These all provide a high nutritional content and will cause a minimum of discomfort while passing through your mouth and throat. Keeping foods at a moderate temperature may also be helpful, since items that are either too hot or too cold may increase your discomfort.

Diarrhea
If you experience diarrhea after eating, try eating only clear liquids (e.g., Jell-O, ginger ale, water, broth soups) for one day. If the diarrhea persists for more than one day, it is important that you notify your physician. If the diarrhea improves, resume eating very small, frequent meals, chewing well and eating slowly.

If the stools are frequent, try to determine which foods increase the number of bowel movements. For example, many patients find that foods high in fat and fiber cause diarrhea. Other patients find that milk or milk products and/or foods high in sugar do the same. Try to figure out which foods to avoid. Remember, it is important to eat very small, frequent meals, to chew your food thoroughly, and to eat slowly so that only small amounts pass through the intestinal tract at one time.

Foods High in Potassium
Your blood potassium level will be monitored during your follow-up visits. If your blood potassium level is low, your doctor may prescribe oral potassium supplements and/or advise you to eat foods and drink beverages high in potassium. Here are some suggestions:

• Beverages: apricot nectar, buttermilk, coffee (brewed or instant), eggnog, Gatorade, grapefruit juice, Hawaiian Punch, lemonade (frozen concentrate), milk (whole, skim, or low-fat) orange juice, orange Tang, pineapple juice, prune juice, tea (brewed), tomato juice, V-8 juice
• Breads/cereals: pumpernickel, raisin bread, cereals (All Bran, 100% Bran Flakes, Bran Buds, Bran Chex, Fortified Oat Flakes, oatmeal, Raisin Bran, Wheatena, wheat germ)
• Fruits: apricots, avocados, bananas, cantaloupe, dates, dried mixed fruit, figs, guava, honeydew, kiwi, mango, nectarines, oranges, papaya, peaches, plums, prunes, raisins, tangelos.  Note: Dried fruits are higher in potassium than their fresh counterparts, and fresh, uncooked fruits are higher in potassium than boiled or canned fruits.
• Meat, fish, poultry
• Salt substitute (potassium chloride)
• Vegetables: artichokes, avocados, bamboo shoots, beans, beets, black-eyed peas, broccoli, chard, chick peas, escarole, leeks, lima beans, mushrooms, parsnips, potatoes, spinach, squash, sweet potatoes, tomatoes. Note: Fresh, uncooked vegetables are higher in potassium than boiled or canned varieties.

On subsequent visits, if your blood potassium level shows improvement, and you are able to consume and tolerate potassium-rich foods and drinks, your doctor will begin to reduce the number of potassium pills you must take.

Smoking and Alcohol Consumption
As a result of high-dose chemotherapy and some of the antibiotics used to treat your infections during your transplant therapy, your liver will be sensitive and you should avoid alcoholic beverages for three to four months. If you wish to have a daily glass of wine or beer, please consult with your doctor first. Due to the risk of a respiratory infection, it is very dangerous to smoke anything (cigars, pipes, cigarettes, or marijuana) after your transplant treatment. Following radiation treatment, any type of smoke can be particularly harmful to your lungs, so avoid smoke-filled rooms.

Psychosocial Support
Because the transplant experience creates emotional strain for both patients and their families, the Blood and Marrow Stem Cell Transplantation Program provides psychological support services. Feelings of anxiety, depression, frustration, and guilt are common. Coping with prolonged isolation and taxing hospital routines can also be stressful.

Our social workers and oncology counselors offer individual, family, and group support sessions aimed at identifying situations that cause stress and developing ways to cope with them. Our social workers will also assess the need to refer your case to outside agencies for financial assistance, as the cost of the transplant can cause financial problems.

For adult and young adult patients, our ongoing blood and marrow transplant support group meets on the third Thursday of each month (see below). It is open to transplant candidates and to patients and their families after transplant treatment:

The Hackensack University Medical Center
Blood and Marrow Stem Cell Transplantation Support Group Meetings
Where:
The Cancer Center
20 Prospect Avenue, Suite 400
Hackensack, NJ 07601
Second floor waiting area
(Parking on premises)
When: Third Thursday of every month
Time:   7 to 8:30 p.m.
Fee:     Free
Facilitator: Oncology/Stem Cell Transplant Counselor
To register, or for more information, please call (201) 996-5900.