This information will help you prepare for returning home after your allogeneic stem cell transplant.
When your transplant team sees that you are ready, you will be discharged from the hospital. Before you return home, it’s important that you and your caregiver prepare for this transition. You will still need to follow precautions to keep you healthy and prevent infection.
As you read this information, jot down or mark the place(s) where you have a question. This will help remind you to ask your question(s) the next time you see your transplant team.
The time frames given here are general guidelines and may vary. Your transplant team may give you a more exact time frame.
Before Going Home
It is important for you to take part in planning your care after discharge. Your transplant team will work with you before you go home to make plans for your follow-up care.
This phase of your recovery extends over a long period of time—discharge to 1 year (or longer) after your transplant. It is important to remember that although your blood counts are coming back up to the normal range, your immune system is still very immature. You will still need to take preventive medications and follow precautions to keep yourself healthy and avoid infection.
Some complications, particularly those that affect the organs, may become evident during this phase, even if they were not a problem earlier in your course.
The time frames given here are general guidelines and may vary. Your transplant team may give you a more exact time frame.
Before you leave the hospital, you will need to order a MedicAlert bracelet or necklace. Your transplant team will give you an order form and help you fill it out. Your bracelet or necklace should be engraved with the statements “Allogeneic stem cell transplant” and “Irradiated cellular blood components.” This will let paramedics or staff in any hospital know what to do if you are in an accident and cannot tell them yourself.
Discuss with your transplant team whether CMV-safe blood components are necessary for you after your transplant. If so, you will also need to have the statement “CMV-safe blood components only” engraved into your MedicAlert bracelet or necklace.
For more information on MedicAlert, go to: www.medicalert.orgBack to top
You may be very happy and feel ready to go home. However, it is common for people to have some worries and concerns as their discharge date draws near. At home, you and your family will need to manage your care. Feeling confident and comfortable doing this is a process that takes time. You can meet with your social worker during your follow-up appointments. He or she can help you get the services you need and can give you emotional support.
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 may add some stress to your life. People have told us that the key to managing this new stress is to remain as calm and confident as you can. Regaining a sense of balance and comfort will come with time.
You will not feel the same way you did before your illness. You may feel tired and weak. Your appetite may not be what it once was. You may have changes in your senses of taste and smell. It may take time for you to regain your strength and to be able to take part in the activities you enjoyed before your transplant.Back to top
It usually takes 12 to 18 months for your immune system to recover from your transplant. We often tell people that the first year after transplant is like your first year of life as a newborn baby. During that time, you are at risk for infection. Your transplant team will be checking your blood cell counts to see how well your immune system is working. This will help them advise you about any changes to the guidelines you must follow.
Be aware of the symptoms of infection listed below. Call your doctor if you have:
- A temperature of 100.4° F (38.0° C) or higher. Do not take acetaminophen (Tylenol®).
- You do not have to take your temperature daily. However, check it regularly if you do not feel well
- 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, eyes, ears, skin, joints, or abdomen
- Blurred vision or other changes in your ability to see clearly
- Nausea, vomiting, or diarrhea
- Frequent urination, burning on urination, or both
- If you still have a central venous catheter (CVC), and you develop a fever and/or chills, or you have any difficulty flushing it
- Irritation in your rectum, including burning and pain
- A rash
- Small blisters, similar to cold sores, around your mouth or on any other part of your body
You can catch viruses more easily until your immune system is back to normal. Also, viruses that you have had in the past can reactivate. One of these is the virus that causes chicken pox and shingles. If you are exposed to either of these illnesses, call your transplant doctor or nurse immediately. 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 pimples or fluid-filled blisters. If you develop blisters, they can be tiny or as large as a pencil eraser. The blisters may be painful, itch, or burn. If you have any of these symptoms, call your doctor or nurse immediately so you can be treated.
Once your immune system has recovered, you will begin receiving your childhood vaccines. This usually starts about 1 year after your transplant; however, your transplant team will determine when the timing is right for you.
There are certain precautions you can take to decrease your chance of getting an infection. Below, we provide some guidelines for you to follow.
While you are recovering from your transplant, keeping yourself clean is very important and can help prevent infection. Follow the guidelines below.
- Shower or bathe daily. Use a mild soap such as Dove® or Caress®. Do not use Ivory® or a deodorant soap because they can dry out your skin. 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, avoid using very hot water. Apply baby oil or a skin moisturizer such as Eucerin® or Cerave®. Put it on after you bathe, while your skin is still damp. Gently pat your skin dry with your towel. Do not use lotions containing alcohol. They will increase dryness.
- Hair usually starts to grow back about 3 months after the transplant. It is possible that your hair may grow back with a different texture. Although it is rare, hair loss can happen months or years after the transplant.
- Limit your time in direct sunlight. Your skin will be more sensitive and may burn more easily after your transplant. The medications you are taking may add to this. Whenever you are in the sun, protect your skin with a sunscreen that has an SPF of at least 30. Reapply it often. If you will be in direct sunlight for 20 minutes or longer, cover your skin with cotton clothing and a protective hat. Prolonged exposure to the sun may also reactivate cold sores (herpes simplex virus). Over stimulation of the skin by the sun can also cause graft versus host disease (GVHD) of the skin (see section “Graft Versus Host Disease”).
- You can wear contact lenses but be sure that they are thoroughly cleaned before you put them in. Do not reuse cleaning solution. Be sure to discard cleaning solutions when they have expired. If your eyes are dry, use moisturizing drops.
- You can wear makeup. Purchase all new products after your transplant.
- New nails will grow and replace your old nails. This will happen gradually 3 to 4 months after your transplant. Do not get a manicure or pedicure in a nail salon while your immune system is still recovering. You can do this at home with your own equipment.
- If you still have a CVC, do not allow it to soak in water while you bathe.
- Do not get body piercings or tattoos after your transplant. These increase your risk of hepatitis and other infections. Discuss any concerns you may have with your primary attending.
Continue with mouth care as described earlier until your healthcare team tells you that can start using an ultra soft toothbrush. You can brush your teeth with an ultra soft toothbrush if:
- Your absolute neutrophil count (ANC) is higher than 500 (sometimes called 0.5).
- Your platelet count is 20,000 (sometimes called 20) or higher.
Ask your doctor or dentist when you can floss and brush your teeth with a regular toothbrush.
If you wear dentures, you must keep them clean to prevent an infection. Soak them every day in any type of denture cleaner. Use the directions on the product. Then, rinse them thoroughly with tap water. Your dentures may need refitting after your transplant.
If any of your medications are mouth rinses, take out your dentures before rinsing or swishing the medication. This will help the medications work better and will prevent your mouth from becoming reinfected. 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 after your transplant. Do not use commercial, alcohol-based mouthwashes or 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. Your dentist may prescribe other rinses. Sucking on sugarless candy or lozenges may also be helpful.
Your salivary glands may not be as good at washing bacteria from your mouth after your transplant. This increases your risk of cavities. Use toothpaste with fluoride. You can also use a mouthwash with fluoride once your mouth has fully recovered and is no longer too dry. Allow the mouthwash to sit in your mouth for at least 1 minute, then spit it out; do not rinse.
It is just as important to keep your CVC clean after you go home as it was while you were in the hospital. If you go home with a CVC, 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 can also review the resource Caring for Your Central Venous Catheter at: www.mskcc.org/cancer-care/patient-education/caring-your-central-venous-catheter
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 until your transplant team approves. 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 can use an air filtration system in your home, but it is not necessary.
Do not use a humidifier. Bacteria and mold grow easily in it. A pan of water placed near a heat source may 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 your 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.
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 hot 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 can remain in your home. However, for the first few months after your transplant:
- Do not touch the soil from household plants unless you wear gloves and
- Do not touch the water in a vase of flowers. Someone else should change the water in the vases daily.
Animals can carry diseases. They may put you at greater risk for infection while your immune system is recovering. You can have a pet in your home and touch it, 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 are recovering. If you have an aquarium and you must clean it yourself, you must protect yourself by wearing gloves. If you have a cat or dog at home, follow the additional guidelines below until your doctor gives you other instructions.
- 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 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). Discuss with your veterinarian the use of a flea and tick collar.
- Do not clean cat litter boxes or clean up after your dog. Have someone else do these things for you.
- Keep your pets indoors or on your own property whenever possible. This is to help prevent them from picking up diseases from other animals.
- Do not allow pets in your bed.
If you plan to get a pet after your transplant, it is best that you select a healthy dog or cat that is more than 1 year old. Have it spayed or neutered. Outside of your home, avoid close contact with animals in a farm or a petting zoo.
You can have close physical contact with those in your immediate family. However, 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 is sick. Your family members and close friends should get a yearly flu shot.
You can 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 a live virus such as varicella. 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 (rubella).
Take regular walks outside, but avoid dirty areas and construction sites. Walking is an excellent way to regain your strength and endurance. However, during the first few months after your transplant, avoid the following places when they are crowded:
- Shopping malls
- Movie theaters
- Public transportation
You can go to these places at off-peak hours, when there are fewer people. Avoid taking public transportation for at least 3 months after your transplant. Your doctor will tell you when some or all of these restrictions can be lifted.
You can swim in the ocean after you regain your strength and are more active. Pay attention to alerts from the local health department. You can also swim in a private pool that isn’t crowded. Make sure that the pool is chlorinated. You cannot swim in lakes, rivers, or crowded pools until your immune system has recovered. Do not swim if your CVC is still in place.
Platelets are blood cells that help form clots and control bleeding. When your platelet count is low, you are at risk for bleeding. Many patients are discharged with a low-platelet count. It can take weeks or months for your body to produce normal numbers of platelets. You may need to have platelet transfusions.
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. If you see many petechiae, call your doctor. Other symptoms of a low-platelet count may include bleeding from your gums or nose.
If you have gone home with any of these symptoms and they increase in amount or frequency, call your doctor. 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 panic. Remain calm and follow the guidelines below 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 call your doctor.
- Nosebleeds: If you have a nosebleed, sit up and lean forward slightly. Do not tilt your head back. Squeeze the bridge of your nose firmly 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 30 minutes, call your doctor.
- Accidents: If you are in an accident, you may need blood or blood products. They should be irradiated to 3,000 rads. Wear your MedicAlert jewelry at all times—it gives the doctor who will be treating you this information. This is to prevent transfused blood from causing GVHD. If you are admitted to another hospital, have the doctor call MSK immediately for guidelines on blood products.
If your platelet count is below 50,000 (50), follow the guidelines below:
- 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 use dental floss.
- Do not take aspirin, products that have aspirin, and aspirin-like medications, such as such as ibuprofen (Advil®) or naproxen (Aleve®). For more information, see the section titled “Common Medications 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 questions or concerns about this, discuss it with your doctor.
Graft Versus Host Disease
Graft versus host disease (GVHD) occurs when the donor’s immune cells (T cells) start to attack your body’s organs and begin to damage them. There is a chance that GVHD will develop when the new stem cells begin to engraft. A close match of HLA or tissue type between you and your donor helps lower this risk, but does not eliminate it.
Risk factors for GVHD include your age and the gender of your donor. Anyone whose donor is not an identical twin receives some type of prevention for GVHD. This prevention includes either removing the T cells from the transplant (T cell depleted), or giving medications to prevent those T cells from causing GVHD. There are pros and cons to each method, and there are reasons that you would receive one or the other. Your doctor will discuss these with you before your transplant.
There are two kinds of GVHD: acute (early) and chronic (late and longer lasting).
Acute GVHD usually develops within the first 100 days after a transplant, but can occur later. Chronic GVHD usually develops after 100 days, but rarely before the first 3 months after transplant. The symptoms of either may be mild to severe. You may develop acute, but not chronic GVHD. You may develop chronic GVHD without having had acute GVHD. Or, you may develop both. You may or may not have symptoms between the time that you develop acute and chronic GVHD.
Symptoms of acute GVHD include:
- A skin rash that appears on parts of the body or over the entire body
- Jaundice (yellow skin and eye color) and an enlarged liver
- Abnormal liver blood tests
- Loss of appetite
- Nausea and vomiting
- Mild to severe diarrhea
Symptoms of chronic GVHD include:
- Dark skin rash or dry or thickened skin
- Loss of appetite
- Weight loss
- Dry mouth
- Tightness and discomfort in the mouth
- Dry eyes
- Hair loss
- Decreased energy
GVHD may slow the growth of the bone marrow and recovery of the blood counts. This means it will take longer for your immune system to function properly and therefore you can be at an increased risk of infections. It may affect one or more parts of your body. If you have evidence of GVHD, your doctor will discuss the treatment plan with you.Back to top
Resuming Your Activities
The time it takes to recover after a transplant varies. Most people find that it takes about 3 months, while others may need more or less time. The time after your transplant is a time of cell recovery and growth. The cells in your mouth, stomach, intestine, hair, and muscles will all regrow. This requires calories and energy. You may feel more tired than you expected. Remember, this fatigue and weakness are not unusual. Each week, you should regain more of your strength.
Around the third month after your transplant, your hair will start growing more quickly. You may feel well enough to start resuming your usual level of activity. From this point on, you will probably feel progressively better. For most people, however, the first 2 to 3 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 exercises. Your physical therapist can help you decide what type of exercise is right for you. 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.
Some hobbies, such as woodworking, painting, and model building, use products that can be toxic. Always work in a room with plenty of fresh air. Keep the windows open. Use nontoxic paints and glue. If you have questions or concerns about resuming any of your hobbies, ask your doctor.
The earliest you can return to school or work is about 4 months from the time of your transplant. This time frame can vary from person to person and depends many factors. Some people may feel ready to return right away, while others feel concerned after being away for so long. It may help to begin slowly. For example, start with a schedule of half days or 3 days a week. Most people 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, for example, is hard for many people. Others have trouble concentrating or maintaining their attention span. Many cannot keep up their former pace. Your transplant team is here to talk with you about going back to school or work. You can speak to a social worker, nurse, psychiatrist, or your doctor. We can work with you to find ways to ease your transition.
For the first 3 months after your transplant, avoid traveling outside of the greater New York City area.
If you plan to travel by plane, speak with your transplant team. You must have a high enough platelet count to safely travel by plane.
If you plan to travel out of the country during the first 2 years after your transplant, talk with your transplant team. They may recommend that you see an expert in travel medicine to reduce your risk of infection while abroad, depending on your destination.Back to top
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.
Until your doctor tells you that your blood counts and immune system have recovered, follow these precautions:
- Avoid sex that involves penetration or contact with mucous membranes while your blood counts are low (a platelet count less than 50,000). This includes vaginal, oral, and anal sex or inserting fingers, vibrators, or other sex toys into your vagina or anus.
- Use latex condoms each time you have vaginal, oral, or anal sex.
- Use a barrier device (condoms or dental dams) any time your partner’s vaginal secretions or semen could enter your mouth.
- Abstain from any sexual activity that could expose your mouth to feces.
- Avoid sex that involves contact with mucous membranes if a genital infection is suspected or present in either you or your partner.
- Hugging, cuddling, gentle touching, and kissing skin are other ways you can be intimate with your partner during this time.
For additional information about being sexually active during and after treatment, ask your nurse for the following resources:
Sexual Health and Intimacy
The American Cancer Society publishes 2 well-written resources on sexuality following cancer treatment. They are available for free from your local American Cancer Society or on the ACS website at the links below:
After your transplant, you may have:
- Fewer menstrual periods
- No menstrual periods
- Vaginal dryness and discomfort
Vaginal moisturizers are nonhormonal, over-the-counter products that help relieve vaginal dryness and discomfort. They are available in most drug stores or on the Internet. Examples are vitamin E liquid capsules, Replens®, Hyalo GYN®, and K-Y® Brand LIQUIBEADS™.
Vaginal lubricants usually come in a liquid or gel form. They are used to supplement a woman’s own lubrication and minimize dryness and pain during sexual activity. Use these lubricants to make sexual intercourse more comfortable and pleasurable. Examples are Astroglide®, K-Y® Jelly, and Pjur® Woman Bodyglide (a silicone-based lubricant). For more information, ask your nurse for the resource Vaginal Health, or go to: www.mskcc.org/cancer-care/patient-education/resources/vaginal-health
Depending on your treatment, the function of your ovaries may change. This can result in decreased estrogen levels. Your doctor may recommend that you take estrogen supplements after your transplant.
If you need any help or support with these issues, contact the Female Sexual Medicine and Women’s Health Program at 646-888-5076.
Some men experience decreased sexual desire after their transplant. This could have an impact on your relationship. However, as you regain your strength and increase your activities, this too will change.
Some men also experience erectile dysfunction (ED) after their transplant. ED can be treated with medication, including sildenafil citrate (Viagra®) or tadalafil (Cialis®). There are many other ways to treat ED. Your doctor can refer you to a specialist in our Male Sexual and Reproductive Medicine Program.Back to top
Drinking Alcohol and Using Tobacco
After your transplant, your organs need time to recover. Alcohol can harm your liver and recovering bone marrow. This harm can be worse if you are taking medications that can affect your liver. Do not drink alcohol until your doctor tells you it is safe.
- Other tobacco products
Doing so can lead to a serious lung infection. It can also increase your risk of a second cancer. If you need help quitting, contact the MSK Tobacco Treatment Program at 212-610-0507, or go to: www.mskcc.org/cancer-care/counseling-support/tobacco-treatmentBack to top
Your follow-up visits will be scheduled before you are discharged. In general, you will be seen at least 1 to 2 times a week for the first 3 months after your transplant. After that, your appointments will be spaced 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.
When you come to the clinic for your follow-up visits, always wear a surgical mask. Bring a list of all the medications you are taking and the dosages of each one. Make a list of any medications that need to be refilled. If you are going to run out of any medications before your follow-up visit, tell your doctor before your appointment. You will be given prescriptions during your visit to be filled either at MSK or your local pharmacy.
You will have blood tests to check your blood counts, electrolyte levels, and liver and kidney function. Bone marrow aspirations will be done every few months. They are usually done at 1, 3, 6, 12, and 24 months after transplant. If needed, your bone marrow may be checked more often or for a longer time after your 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 to have lumbar punctures (spinal taps). This is especially true for patients who have had, or are at high risk for having, leukemia in the spinal fluid. A lumbar puncture allows your doctor to give you more chemotherapy in your spinal fluid after your transplant. It can also be given through an Ommaya reservoir, if you have one.
You may need to have intravenous treatments, including antibiotics and blood transfusions. If so, your doctor or nurse will tell you how long and how often you will need them. These appointments will usually be scheduled at the same time as your follow-up visits.
At some point after your transplant, you may be referred to our survivorship nurse practitioner clinic. A survivorship nurse practitioner is part of the transplant team and works closely with your doctors and nurses to help with your recovery. This nurse practitioner will also communicate directly with your primary care provider so that information about your transplant is included in your overall healthcare.
After you have recovered from your transplant, go to your local dentist for routine checks. If you need extensive dental work, you may wish to have your local dentist call a dentist at MSK at 212-639-7644 before treating you. Your transplant doctor will tell you when it’s safe to resume all dental care with your dentist.
Tell your doctor or dentist if you have:
- Taken the medications pamidromate (Aredia®) or zoledronic acid (Zometa®)
- Jaw tightness
- Discoloration at your gum line or receding gums
Common Medications to Avoid
Do not take aspirin, any medications containing aspirin, and all other nonsteroidal anti-inflammatory drugs (NSAIDs) until your doctor gives you other instructions. For a list of these medications, ask your nurse for the resource Common Medications Containing Aspirin and Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs) or go to: www.mskcc.org/cancer-care/patient-education/resources/common-medications-containing-aspirin-and-other-nonsteroidal-anti-inflammatory-drugs-nsa
Check the label of any over-the-counter medications that you are thinking of taking to be sure that they do not contain ingredients you should avoid. If you are not sure about whether or not a specific medication is safe to take, ask your transplant team. Do not take any herbal supplements or home remedies without talking to your transplant team first.Back to top