Amar Kelkar, MD, FACP, is a stem cell transplantation physician at the Dana-Farber Cancer Institute/Brigham and Women’s Cancer Center and an instructor in medicine at Harvard Medical School. He is a member of the Abel Laboratory with research interests in hematology, care delivery, health economics, medical ethics, and health policy. Vincent Ho, MD, is the director of clinical operations for the Stem Cell Transplantation Program at the Dana-Farber Cancer Institute/Brigham and Women’s Cancer Center. He is an associate professor of medicine at Harvard Medical School. You can follow Dr. Kelkar on Twitter. View disclosure information for Dr. Kelkar and Dr. Ho.
For people with certain types of cancer, such as leukemia, lymphoma, or myeloma, their doctor may recommend a bone marrow transplant to treat the cancer. A bone marrow transplant, which is also called a stem cell transplant, replaces a person’s bone marrow with healthy cells. The replacement cells can come either from the person’s own body, called an autologous transplant, or from a donor, called an allogenic transplant.
If you have received or are considering receiving a bone marrow transplant, you may wonder what recovery from the procedure will be like after you are discharged from the hospital. Here, learn more about what follow-up care will be needed following a transplant, what symptoms you may experience, and how to navigate everyday life after the procedure.
What follow-up care will be needed after a bone marrow transplant?
Approximately 2 to 3 weeks after your transplant, the stem cells that were infused during the procedure should engraft, which means they start producing new blood cells. Around this time, you may be discharged home from the hospital with instructions to follow up with your bone marrow transplant team.
For the first 100 days after your transplant, you can expect to have frequent clinic visits to monitor for complications from the transplant, such as infections, blood electrolyte imbalances, and dehydration. If you had an allogeneic transplant, your health care team will also monitor you for graft-versus-host disease, a condition that can cause skin rash, nausea and vomiting, abdominal pain, diarrhea, and liver issues.
Your visits to the clinic in these first 100 days will include lab tests, physical examinations, and discussions of how to manage complications. These visits are often quick, but sometimes blood transfusions and/or intravenous (IV) infusions are necessary, which can make the visit longer.
What are the most common symptoms after a bone marrow transplant?
Depending on how many days have passed since your transplant, you may experience different symptoms. In the first few weeks, you may experience symptoms related to the chemotherapy you received before the transplant, such nausea, vomiting, decreased appetite, taste changes, hair loss, fatigue, weakness, mouth sores, and diarrhea. As your blood counts fall following the transplant, you may also experience a fever or infection.
Most of these symptoms will improve once your white blood cells return, or engraft, at about 2 to 3 weeks following the transplant. However, for some patients, the symptoms of fatigue, feeling cold, and taste changes can linger for up to a few months. For others, these symptoms pass quickly or may never occur to begin with. No matter what your experience with symptoms is following your transplant, it’s important to be patient with yourself as you recover and lean on your support systems.
When should I contact my health care team about symptoms?
If you develop a fever, significant swelling of your legs or belly, shortness of breath, chest pain or tightness, persistent diarrhea, bleeding in your stools, significant bruising, dizziness or loss of consciousness, or severe pain of any kind, you should contact your health care team immediately.
It is common to feel different after a transplant. However, if you continue to feel poorly after your transplant, that’s also a reason to contact your health care team.
What does life at home look like in the months after a bone marrow transplant?
After returning home following a bone marrow transplant, you can expect a slow recovery. You will need to manage your food, medications, activity, hygiene, close contacts, and your own expectations. Staying on top of your food and fluid intake and taking all of your medications as prescribed will be top priorities. Food must be freshly prepared, fully cooked, and eaten hot. You should avoid takeout meals until your bone marrow transplant team says otherwise. You should also avoid handling raw meats if possible.
In terms of your medications, be sure to keep an updated list of your medications that includes notes on the dose you are taking, times of day you will need to take the medications, and when to “hold” on taking certain medications, such as on the day the blood level of a medication will be tested. You may want to ask your bone marrow transplant care provider to give you an updated medication list at the end of each visit. It is very important to not miss doses and to alert your health care team about needed prescription refills well before the medication runs out. Not all pharmacies carry certain transplant medications, so you may need to plan for more time to get these medications refilled.
Your energy after a transplant may also be less than what you were used to before the procedure. You’ll have to slowly increase your activity level over time, which usually starts with daily walks and simple exercises. Remember to set reasonable goals. After all, you’re recovering from a major procedure and need that time to recover. However, building up your activity level over time is an important part of your recovery and will have a big impact on your quality of life after transplant. Talk with your health care team about what they recommend for you in terms of activity level.
Who can I see in person?
After a transplant, you will need to be vigilant about avoiding potential infections. This means limiting your interactions with other people and avoiding enclosed public spaces and crowds. You should also avoid inviting people other than your immediate family into your living space. This is an important step in avoiding infections.
You may find that this isolation can get lonely or boring. Some ways around this include video chatting with your loved ones or meeting people outdoors. When you do see people outside of your immediate family or usual caregivers, you should wear a mask and ask others to do the same.
When can I travel after a bone marrow transplant?
You should check with your transplant team on when they feel it is safe for you to travel, as the answer may vary at different transplant centers based on the type of transplant you received. In general, doctors recommend against traveling during the first 100 days after a transplant and avoiding air travel or public transport for 9 to 12 months following a transplant, if possible. Avoiding unnecessary travel is important in reducing your risk of infection.
What should caregivers know about caring for a loved one after a transplant?
Caregivers are superheroes without capes. We ask them to help manage their loved one’s food preparation and shopping, picking up and handling medications, home hygiene, scheduling appointments, and providing transportation, while also acting as gatekeepers for their loved one. They are also major sources of emotional support. Overall, caring for a loved one after they receive a bone marrow transplant is a big commitment, so it is very important to identify who your primary caregiver will be before you have the transplant. And, make sure to show them lots of love and thanks!
A caregiver’s main responsibilities will come during the first 100 days after the transplant, but they’ll be asked to help out for most of the first year after the transplant. Before the procedure, caregivers should talk with the transplant team to know what responsibilities and tasks will be required immediately after treatment and during the entire recovery period. If you are caring for a loved one after a transplant, remember that there are resources available to help you cope. Talk with the health care team if you need support.