This information will help you prepare for returning home after your allogeneic transplant.
This booklet will help you prepare for the time when you are ready to leave the hospital. Some of this booklet will be a review of what you already know. The rest addresses topics that you must know before you go home. We have included answers to questions many patients have asked. As you read the booklet, jot down or mark the place(s) where you have a question. That will help you remember to ask your question(s) the next time you see your doctor or nurse. There are no right or wrong questions, and no concern is too small.
The time frames given here are rough and may vary. Your doctor may give you more exact time frames. We hope you will take part in planning your care after discharge. Your healthcare team will work with you before you go home to make plans for your follow-up care.
Before you leave the hospital, you should order a Medic Alert® bracelet. It should be engraved with the statement “irradiated blood products only.” This will let staff in any hospital know what to do if you are in an accident and cannot tell them yourself. It can save your life, and it is just as important as wearing a seat belt in a car. Your nurse will give you an order form.
You may be very happy and feel ready to go home. However, you may also have some worries. These worries are common among patients who have had a transplant. The doctors and nurses in the hospital were right there to answer questions and take care of you. At home, you and your family will need to manage your care. Feeling confident and comfortable doing this is a process that takes time.
When you go home, you will need to adjust to living with your family again. You may find that the precautions you must take in the months ahead might add some stress to your life. Patients have told us that the key to managing is to remain as calm and confident as you can. Regaining a sense of balance and comfort will come with time.
This is a time for getting well. You will not feel the same way you did before your illness. Many patients feel tired and weak. Your appetite may not be what it once was. It will take time for you to regain your strength and to be able to take part in the activities you enjoyed before your transplant.
The social worker can meet with you during outpatient appointments. She or he can help you obtain the services you need and can give you emotional support.
Recognizing and Preventing Potential Medical Problems
It usually takes 12 to 18 months for your immune system to develop again. During that time, you are at risk for some infections. The transplant team will be checking your blood to see how well your immune system is working. This will help them advise you about any changes to the guidelines you must follow.
Your new bone marrow can protect you in most instances. However, even people who have not had transplants get infections. Because your immune system will not be fully functioning, an infection could be more serious for you than for others. It is important to be aware of the symptoms listed below. Call your doctor or nurse right away if you have:
- A fever of 100.4° F (38.0° C) or higher. Do not take acetaminophen (Tylenol®). Call your doctor immediately. It does not matter if it's day or night.
You do not have to take your temperature each day. If you do not feel well however, check it regularly.
- Flushed appearance of the skin, sweating, or shaking chills
- Coughing, sneezing, runny nose, shortness of breath, or chest discomfort
- Any redness, swelling, and/or pain in your throat or eyes
- Any skin rash anywhere on your body. It can be redness, pimples, or blisters.
- Any severe pain in your stomach
- Any nausea, vomiting, or diarrhea. Diarrhea is frequent stools (bowel movements) or stools that are loose or watery
- Blurred vision or other changes in your eyesight
- Frequent urination, burning on urination, or both
- Redness, tenderness, swelling, drainage, or all of these at the exit site of your IV catheter
- Difficulty flushing your central venous catheter, or any chills associated with flushing the catheter
- Rectal irritation, burning, or pain
You can catch viruses more easily until your immune system is back to normal. Viruses that you have had in the past can also sometimes reactivate. One of these is the virus that causes chicken pox and shingles. If you are exposed to these infections, call your transplant doctor or nurse as soon as you are aware of your exposure. You will need to be assessed.
The virus can also reactivate in patients who have already had chicken pox as a child. This often starts as pain in the skin with pimple-like blisters. If you do develop blisters they can be tiny or as large as an eraser. The blisters remain painful. Call your doctor or nurse immediately so you can be treated. It is also important for your doctor to see you in an isolation room away from other patients. This is because you could infect other patients who have low immune systems.
There are certain precautions you can take to decrease your chance of getting an infection. In the next few pages, we provide some guidelines for you to follow.
Personal hygiene is important. It can help prevent an infection.
- Take a daily bath or shower. Use a mild soap such as Dove® or Caress®. Do not use Ivory® soap or a deodorant soap, as they are very drying. Be sure to wash your underarms and groin. Use a washcloth and towel that are only for your personal use. If your skin is dry, you may apply baby oil or a skin moisturizer like Lubriderm®. Put it on after your bath while your skin is still damp. Avoid very hot water, and do not rub your skin completely dry with your towel. Do not use lotions containing alcohol. They will increase dryness. Hair growth usually begins about three months after transplant. Keep your hair and scalp clean and avoid overly drying shampoos. Whenever you are in the sun, protect your skin with sunscreen that has an SPF of at least 30.
- You may use contact lenses. However, be sure that they are thoroughly clean before you wear them. Do not reuse cleaning solutions. Pay attention to expiration dates for cleaning solutions. Discard them when they have expired.
- You may wear make-up. Use all fresh products after the transplant.
- You can also expect that with new cell growth, new nails will grow and replace your old nails. This will happen gradually. As with your hair, it will occur over three to four months after transplant. Do not have a manicure or pedicure in a nail salon while your immune system is still recovering. You may do them at home with your own equipment.
- If you still have an IV catheter, do not allow it to soak in water while you bathe.
- Do not have body piercing or tattoos after transplant. These increase the risk of hepatitis and other infections.
You can brush your teeth with an ultrasoft toothbrush if:
- Your absolute neutrophil count (ANC) is greater than 500 (sometimes called 0.5)
- And your platelet count is 20,000 (20) or higher.
Ask your doctor or the Dental Service at MSKCC when you can floss and brush your teeth with a regular toothbrush.
If you wear dentures, you must keep them clean. Soak them every day in any denture cleaner. Use the directions on the product. Then rinse them thoroughly with tap water. This will prevent them from harboring infection. Your dentures may need refitting after transplant. If any of your medicines are mouth rinses, take out your dentures before rinsing or swishing the medicine. This will help the medicine work better and will prevent re-infection of your mouth. Tell your doctor or nurse if you have pain or discomfort in your mouth.
Dryness of the mouth is another symptom you may have for 3 to 4 months or longer. It is an after-effect of the mouth sores you may have had during transplant. Do not use commercial mouthwashes and hydrogen peroxide. They will dry and irritate your mouth. Instead, use a mild salt water rinse. Make it by mixing ½-teaspoon of salt and ½-teaspoon of baking soda in an 8-ounce glass of water. The dentist may prescribe other rinses. Sucking on sugarless candy or lozenges may also be helpful. Use a fluoride-based mouthwash (e.g., Biotene®) after your mouth has fully recovered and is no longer very dry. Allow this mouthwash to sit in your mouth for at least one minute, then spit it out; do not rinse. Dry mouth due to lack of normal saliva increases your risk of cavities. Careful mouth care as explained above will lower that risk.
Care of Your IV Catheter
It is just as important to keep your catheter clean after you go home as it was while you were in the hospital. Your nurse will teach you how to care for it at home and you will have a chance to practice with the nurse watching. You will also get a booklet to remind you of the steps if you forget.
Your Home Environment
Your home must be kept as free of dirt and dust as possible. However, you should not go to extremes. Do not repaint your walls or put down new carpets. In fact, you should not be around any renovations or construction. This includes those in process and those done within the past 3 months. Stay out of any musty area where mold may grow, such as a damp basement. You may use an air filtration system in your home, but it is not necessary. Do not use a humidifier as bacteria and mold easily grow in them. A pan of water, placed near a heat source may be of some help in the winter. You must change the water every day.
In general, try not to do any chores like dusting or vacuuming for the first 3 months after transplant. Depending on your energy level, it is fine for you to cook, wash dishes, or iron. Your bathroom should be kept very clean (especially the tub and toilet). Use a disinfectant regularly.
To prevent the transfer of germs from others to you, wash your eating utensils and linens carefully. They do not need to be washed separately from the rest of your household. Thoroughly wash all forks, spoons, and knives with water and dishwashing detergent or use the dishwasher. Wash towels twice a week and bed linens once a week. Use only your own towels and washcloths, not those of your family members.
Household plants may remain in your home. However, take some precautions for the first few months.
- Do not touch the soil from household plants unless you wear gloves and a mask.
- Do not touch the water in a vase of flowers unless you thoroughly wash your hands afterwards. Someone should change the water in the vases daily.
Animals can carry diseases. They may put you at greater risk while your immune system recovers. You may touch your pet and keep a house pet in your home, but it is best that you do not have close physical contact. Do not touch the animal's saliva or feces. Be sure to protect yourself from bites or scratches. Do not handle or care for birds, lizards, snakes, turtles, hamsters, or other rodents while you recover. If you have an aquarium and you must clean it yourself, you must protect yourself. Use gloves when you clean the tank. If you have a cat or dog at home, follow the additional guidelines below until your doctor instructs you otherwise.
Cats and Dogs
- Be sure that your pet is up-to-date with immunizations and any booster shots.
- Have your veterinarian check your pet's stool yearly for parasites.
- If you have a cat, get it tested each year for feline leukemia and for toxoplasmosis.
- Have your pet treated for fleas. If your pet walks through wooded areas, have it screened for ticks every day during tick season (May to November).
- Do not clean cat litter boxes or clean up after your dog in the street. Have someone else do these things for you.
- Keep your pets indoors or on your own property. This is to help prevent them from picking up diseases from other animals.
- Do not allow pets in your bed.
If you plan to obtain a pet after your transplant, it is best that you select a healthy dog or cat that is more than one year old. Have it spayed or neutered. Outside of your home, avoid close contact with animals in a farm or a petting zoo. Consult with your doctor before you resume or start activities such as hunting with your pet.
Family and Visitors
You may have close physical contact with those in your immediate family. Do not have close contact with someone who has a cold or any signs of being sick. Wear a mask if you must be in the same room with someone who has a cold or is sick. Your family members and close friends should have a yearly flu shot to protect them from the flu, which is contagious to you.
You may have visitors, but limit them to small groups. Do not visit with anyone who has:
- A cold
- Recently been exposed to chickenpox
- Recently been exposed to herpes
- Recently been exposed to shingles
- Recently been exposed to any other type of virus or infection
- Recently received a vaccine with live virus. There are very few of these, but if someone in your household needs one, his or her doctor should be told that you are immune suppressed and live in the same household.
Call your doctor immediately if you or any other family member is exposed to chickenpox, shingles, measles, or German measles.
Outside Your Home
Take regular walks outside, but avoid dirty areas and construction sites. Walking is an excellent way to regain your strength and endurance. During the first few months after your transplant, however, avoid places like the following when they are crowded:
- Shopping malls
- Movie theaters
- Public transportation
You may go to these places at off-peak hours, when there are fewer people. You should not take buses or subways for at least three months after transplant. Your doctor will advise you as to when some or all of these restrictions can be lifted.
Your skin is more sensitive because of the treatment you have received. The medicines you are taking may add to this. Limit your time in direct sunlight. Your skin may have a tendency to sunburn more easily. If you will be in direct sunlight for 20 minutes or more, cover your skin with cotton clothing and a protective hat. Use a sunscreen with an SPF of 30 or more. Prolonged exposure to the sun may also reactivate cold sores (herpes simplex virus).
You may swim in the ocean after you regain your strength and are more active. Pay attention to alerts from the Health Department. Do not swim if the water has a high bacteria count. You may also swim in an uncrowded private pool. Make sure that it is chlorinated. You may not swim in lakes, rivers, or crowded pools until you your immune system has recovered. Do not go swimming if your IV catheter is still in place. Use common sense. Avoid obviously polluted, outdoor bodies of water.
Platelets are blood cells that help form clots and control bleeding. When your platelet count is low, bleeding is a potential problem. Many patients leave the hospital with a low platelet count. It may take weeks or months for the new marrow to produce normal numbers of platelets. You may require platelet transfusions as an outpatient.
Signs of a low platelet count include changes in the skin, bleeding, or both. Skin changes may include a lot of bruising or petechiae (pe-tea-key-eye). These are tiny, purplish-red spots on the skin that do not disappear when you press them. You may see them on your lower legs or inside ankles after you leave the hospital. If you see many petechiae, call your doctor. Other symptoms of a low platelet count might include bleeding from your gums or nose. If you need them, you can have platelet transfusions as an outpatient.
Our primary concern is a change in any of these signs or symptoms. If you have gone home with any of these symptoms and they increase in amount or frequency, let your doctor know. If you have not had any of these symptoms and suddenly develop them, call your doctor. It may mean that there is a change in your platelet count.
If you have an injury that causes bleeding, do not be frightened. Remain calm and follow first aid principles for the type of injury.
- Open wounds: If you cut yourself, put a clean dry gauze pad, towel, or cloth over the cut, and press it firmly. Apply pressure until the bleeding stops. If the bleeding continues, elevate the wound. For example, raise your arm or prop up your feet. Apply ice to the wound, and notify your doctor.
- Nose bleeds: If you have a nose bleed, sit up and lean slightly forward. Do not tilt your head back. Squeeze the bridge of your nose between your thumb and forefinger 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 a half hour, notify your doctor.
- Accidents: If you are in an accident, you may need blood or blood products. They must be irradiated to 3,000 rads. Wear your MedicAlert® emblem at all times. It gives the doctor this information. That is to prevent transfused blood from causing graft-versus-host disease (GVHD). Read about GVHD below. If you are admitted to another hospital, have the doctor call MSKCC immediately for guidance on blood products.
If your platelet count is below 50,000 (50):
- Use an electric razor when shaving.
- Use a soft-bristle toothbrush or an oral irrigator such as a WaterPic® to prevent gum bleeding.
- Do not take aspirin, products that have aspirin, and aspirin-like medicines (also see “Common Drugs to Avoid”).
- Avoid blowing your nose forcefully.
- If you are constipated, call your doctor. You may need more fiber in your diet or a stool softener.
- Avoid activities or sports that can cause injury. If you have any doubts, discuss it with your doctor.
Allogeneic Transplants and GVHD
When your new marrow begins to “take” or grow, there is a chance that graft versus host disease (GVHD) will develop. GVHD is an immune response by the donor cells (graft) against the patient's (host's) body. The chance of developing GVHD depends on the type of transplant. Anyone who is at risk for GVHD will receive medicine to try to prevent it. No preventive measure is perfect, however. You should learn the symptoms of GVHD. It is important to tell your doctor or nurse immediately if you have any GVHD symptoms. That way, you can be evaluated and if needed, treated early. The symptoms may be mild or severe and can develop within one year or so after your stem cell transplant.
Patients can develop acute GVHD only, chronic GVHD only, or both acute followed by chronic GVHD. Acute GVHD sometimes has a delayed onset and may not appear until after the first 100 days. Any of the following organs may be involved in acute GVHD:
- A rash on parts or all of your body. It may worsen to the point where the skin blisters or peels.
G.I. (gastrointestinal) Tract
- Occasional or persistent loss of appetite
- Mild to severe upset stomach
- Nausea and vomiting
- Diarrhea, with or without bleeding, but usually with stomach cramps
- Mild, moderate, or severe liver function changes may be seen in blood tests. These can cause:
- Yellowing of the skin and eye (jaundice)
- Changes in the color of the urine or stool
- Enlargement of the liver
Call your doctor or nurse if you notice any of the following symptoms:
- Any rash or itching, which could even be on the palms of your hands or the soles of your feet
- Skin or eyes that appear yellow
- Urine that becomes dark in color
- Stools that are:
- Crampy, watery, frequent, and/or large in volume
- Green, white, or clay color
- Black or tarry
- Persistent nausea, vomiting, or both.
Chronic GVHD develops later after transplant than acute GVHD. It may also involve the same organs as acute GVHD, but it can involve other organs as well. As with acute GVHD, the symptoms with chronic GVHD may range from mild to severe.
Call your transplant doctor if you develop new symptoms like:
- Thickening and unusual dryness or scaling of the skin
- Loss of appetite or weight loss
- Dryness of your mouth or eyes
- New onset of breathing problems like wheezing
These could be early signs of chronic GVHD. Your doctor will discuss the best treatment plan for you.
The transplant team will review your treatment plan with you regularly. Treatment for chronic GVHD may be needed for months. In some cases, viral infections may cause GVHD to come back. Viruses can also make the GVHD worse, even after transplant. Call your doctor if any of your symptoms get worse or if new ones develop. You will need to be treated.
Resuming Your Activities
Recovery after a transplant varies. Most patients find that it takes about 3 months to feel almost normal again. Some take longer. The time after your transplant is a time of cell recovery and growth. Your bone marrow will grow. The cells in your mouth, stomach, intestine, hair, and muscles will all re-grow. This requires calories and energy. You may feel more tired than you expected. Remember, this fatigue and weakness is not unusual. Each week you should regain more of your strength.
Around the third month after transplant, your hair will start growing more quickly. You may feel well enough to start resuming your old level of activity.
From this point on, you will probably feel progressively better. For most people, however, the first 6 months to 1 year after transplant remain a time of recovery.
Most people find it takes time to regain their strength. It may be helpful to follow a regular exercise plan. When you begin to exercise, start with easy ones first. As you feel ready, ask your doctor how to increase your exercise. Do not play contact sports or ski until your platelet count is over 100,000. Do not swim with an IV catheter in place.
Some hobbies like wood working, painting, and model building use products that can be toxic. Always work in a room with plenty of fresh air. Keep windows open. Use non-toxic paints and glue.
Returning to school or work
The earliest you might return to school or work is about two to four months from the time of the transplant. Some people may feel ready to return very quickly. Others feel concerned after being away for so long. It may help to begin slowly. For example, a schedule of half days or 3 days a week may be a good start. Most patients tell us that thinking about returning is almost harder than the actual event.
Making the transition back to your usual lifestyle can be difficult. Some patients have talked about feelings related to changes in their appearance. Hair loss is very hard for many. Others have trouble concentrating or maintaining their attention span. Many cannot keep up their former pace. The MSKCC staff are here to talk with you about going back to school or work. You may speak to a social worker, nurse, psychiatrist, or your doctor. We can work with you to find ways to ease your transition.
After your treatment, you may have concerns about resuming your sexual activities. Former patients have told us of their common concerns and issues. You may have similar concerns.
You may have:
- Fewer menstrual periods
- No menstrual periods
- Decreased vaginal secretions
Water-based lubricants can relieve vaginal dryness. Examples are Replens® and Astroglide®. They do not require a prescription.
Depending on your treatment, the function of the ovaries may change. This can result in decreased estrogen levels. Estrogen supplements may be recommended after the transplant. If you are sexually active, your partner must use a condom for at least 6 months.
You may have less sexual desire. If you have ED (erectile dysfunction) or decreased sexual desire, it may respond to medicine. Examples of medicine you take by mouth are sildenafil (Viagra®) or tadalafil (Cialis®). There are many other ways to treat ED. You may want to be referred to a specialist in sexual medicine. If you are sexually active, you must use a condom for at least 6 months after your transplant.
It is important that you have answers to your questions and concerns about sexual activity. Please discuss your concerns with your doctor and nurse. Anal intercourse should be avoided. It has a high risk of bleeding and infection. Oral sex without barrier protection is discouraged. It has a risk of viral diseases. Herpes simplex infections are a major concern. Discuss your questions about giving and receiving oral sex with your transplant nurse or doctor. They will evaluate your clinical status and the state of your immune system. They can advise you on the precautions you should take.
Many of the treatments for transplant affect your ability to have children. Over the long term, they should not affect your ability to enjoy sex. Before you have sex, your platelet count should be over 50,000. At first, you may have less interest in sex. This could have an impact on your relationship. However, as you regain your strength and increase your activities, this too will change.
Before you go home, ask your doctor about resuming sexual activity. It is important for you and your partner to have answers to your questions. If new questions come up, you can discuss them during your follow-up visits.
Alcohol Consumption and Smoking
After your transplant, some organs will need time to recover. Any alcoholic beverage may harm your liver. This harm can be worse if you are taking medicines that can affect the liver. Do not drink alcohol until your transplant doctor tells you it is safe. Never smoke:
- other tobacco products
Doing so can lead to a serious lung infection. It also increases the risk of a second cancer.
Outpatient Visits and Follow-Up
Follow-up visits are for check-ups and these will be scheduled before you go home. They also give you and your doctor a chance to talk about your progress. They are a time for you to ask questions. In general, you will be seen at least once a week for the first three months after transplant. After that, your appointments will be further apart as long as you are doing well. Some patients find it helpful to bring a list of questions that may have come up since the last visit. Also bring either a list of all of your medicines and doses or all of your medicine bottles. Your medicine list will be reviewed and updated at each visit. Always check your medicines before each appointment. Make a list of the ones that need refills. Your doctor or nurse will give you the prescriptions during your visit.
During your follow-up visits, blood will be drawn. The blood tests are to check your blood counts, your electrolytes, and liver and kidney function. Blood tests will be done from time to time to monitor your immune system recovery. Bone marrow aspirations will be done every few months. They are usually done at 1, 3, 6, 12, and 24 months after your transplant. If needed, your bone marrow may be checked more often or for a longer time after transplant. Bone marrow tests tell us about the health and growth of your marrow.
If you had a transplant for acute leukemia, you may need lumbar punctures (spinal taps). This is especially true for patients who have had leukemia in the spinal fluid. It is also true for patients who are at high risk for this. The lumbar puncture allows your doctor to give you more chemotherapy in your spinal fluid after transplant. It can also be given through an Ommaya reservoir if you have one.
If you require intravenous treatments, your doctor or nurse will tell you:
- Why you need them
- How long you will need them
- How often you will need them
If you need any, they will be given in the adult or pediatric day hospital. The appointments will usually be scheduled with your follow-up visits.
Ongoing follow up care after transplant is very important to make sure you achieve the best possible long term health. At some point after your transplant, you may be referred to our survivorship nurse practitioner. The aim of this nurse practitioner is to assist your general recovery and manage the effects of cancer treatment and transplant. The survivorship nurse practitioner is part of the transplant team and works closely with your attending and nurses to ensure your recovery. The nurse practitioner will also communicate directly with your primary care provider so that information about your transplant is included in your overall health care.
Have your local dentist work on your teeth for routine checks. If you need extensive dental work, have your local dentist consult one of our dentists. He or she should call (212) 639-7644 before treating you. Your transplant doctor will tell you when it's safe to resume all dental care with your dentist.
Transplant before age 11 can delay dental root development. Your local dentist or orthodontist should speak with our dentist before treating you. Your treatment plan may have to be changed.
You may develop cataracts if you received:
- High-dose steroids
If you develop symptoms, see an eye doctor. You may only need a change in your eyeglass or contact lens prescription. Be sure to tell the optician or eye doctor what treatment you had.
Endocrine (Hormonal System)
Your hormonal system may not return to normal. You will have blood work and exams to check your hormone levels. You may have a change in your thyroid function. If so, it will require medicine to keep your thyroid function healthy. (See also the section about sexuality).
All transplant patients get some immunizations once their immune system has matured enough. You will eventually need most of the ones you received as a young child. You will receive specific instructions for these when it is safe to begin.
The Metric System
In the hospital, temperatures are recorded according to the Celsius or centigrade scale. The following is an approximate conversion table from degrees centigrade to degrees Fahrenheit:
Weights are measured in kilograms. To calculate your weight in pounds, multiply the number of kilograms by 2.2 pounds. If you want to determine your weight in kilograms, divide the number of pounds by 2.2. For example, 110 lbs/2.2 = 50 kg.
Common drugs you should avoid include:
Arthritis Pain Formula®
Excedrin and Excedrin P.M.®
Check the label of any medicines that you are thinking of taking. This includes those that do not need prescriptions. If you are not sure if the medicine is safe to take, ask a nurse or doctor on the BMT Service first. You will be told when your platelet count is high enough to take these kinds of medicines.
Do not take any herbal or home remedies unless your doctor tells you it is safe. You can learn about herbal medicines on the MSKCC Integrative Medicine web site (www.mskcc.org/aboutherbs). Always discuss a product with your doctor before taking it.
Please see your discharge instructions
We hope this booklet helps prepare you for going home after your transplant. Your follow-up care is important to us. Although you will no longer be in the hospital, we are interested in the progress you are making. We are here to help you. Please do not hesitate to call if you have any questions or want to discuss any issue.
Important Telephone Numbers
BMT Attending doctor and outpatient nurse
- 9:00 am to 5:00 pm: office secretary will direct your call or message to the doctor or nurse.
- At night and on weekends and holidays, the answering service will contact the covering transplant doctor or fellow on call.
Page Operator (212) 639-7900
Urgent Care Center (212) 639-7203
Adult Inpatient Unit (212) 639-6938