After the stem cell transplant

The days after the transplant are numbered as day 1, day 2 and so on. This system is used to describe the timing of events, such as when new blood cells begin to appear or when problems happen.

Engraftment is when transplanted stem cells enter the blood, make their way to the bone marrow and start making new blood cells. It usually takes about 2 to 6 weeks to start seeing a steady return to normal blood cell counts. You will be in the hospital for some of this time.

During this time, you may feel tired and generally unwell. You are at risk of fever, infection, bleeding, anemia, damage to the organs and dietary problems. Most of these problems are worse when the blood count is very low, usually 2 to 3 weeks after the transplant.

You will be kept in a room by yourself in the hospital because of the increased risk of infection. You will have daily blood tests and regular temperature checks. You will be watched closely for bleeding, nausea, vomiting, diarrhea and any other problems.

Until the bone marrow starts making new blood cells you may:

• be given medicines including antibiotics, antifungals and antivirals to prevent and treat infections
• need blood transfusions and platelet transfusions
• be given medicines to prevent graft-versus-host disease (GVHD)
• be given colony-stimulating factors to speed up the healing and lessen the amount of time that blood cell counts are very low

You may be given nutrition and supplements through a central venous tube (catheter) (called parenteral nutrition or total parenteral nutrition, TPN) until you can eat by mouth and problems such as nausea, vomiting and mouth sores have gone away.

Blood tests and a bone marrow sample show when the blood cell counts begin to rise as new blood cells are made. When this happens, and if there are no problems, you may be allowed to go home or move somewhere close to the transplant centre. You must stay nearby in case you have a problem and need to go back to the hospital.

Most transplant centres don’t send you home after a transplant until you meet the following conditions:

• You have not had a fever for 24 to 48 hours.
• You have been able to take pills and keep them down for 48 hours.
• Your symptoms such as nausea, vomiting and diarrhea are controlled with medicine.
• You are able to eat food and drink enough fluids.
• You have safe levels of blood cell counts.
• You have someone to help you at home.

If you can’t meet these conditions, you may be moved from the transplant unit to another area in the hospital.

When you leave the hospital, make sure you follow the instructions about caring for yourself at home.

It may take longer for the bone marrow to recover after an allogeneic transplant than after an autologous transplant, and the hospital stay is often longer. This is because the allogeneic transplant is a more intensive procedure, and it uses stem cells from a donor instead of your own stem cells. Some people may need to stay in the hospital longer if problems develop. Recovery depends on your physical condition before the transplant and the side effects you have.

Many people will not have any major problems after leaving the hospital, but it can still take up to a year to recover. You may feel tired and weak for months. Adjusting emotionally can be hard because of the length of time you feel ill and because you are kept away from other people during your hospital stay in case of infection. You may have strong feelings of anxiety, depression and anger but then also feel happy and excited.

Talk to the healthcare team about your feelings and concerns. You and your caregiver will be given instructions and information about caring for yourself at home, including:

• preparing your home and making it safe
• nutrition and foods you should and shouldn’t eat
• activities you can and can’t do
• how to care for your mouth and teeth
• when to call the transplant team and others on the healthcare team

You will have frequent checkups and tests after your stem cell transplant until the new bone marrow is functioning properly and there are no serious problems.

For the first 3 months after leaving the hospital, you will be checked daily or at least once a week or every 2 weeks until your blood cell counts return to normal. During this time you can expect the following:

• Frequent blood tests are done to check blood cell counts.
• You continue to take medicines to reduce the risk of infection.
• You take drugs to suppress the immune system and reduce the risk of GVHD if you had an allogeneic transplant.
• You may have blood or platelet transfusions.
• You may need to go back to the hospital if you feel unwell or if you have symptoms like fever, skin rash, severe diarrhea or trouble breathing.
• You need to avoid crowded places and contact with children who have recently been exposed to infectious diseases (such as chicken pox) or immunized with live viruses (such as a certain polio vaccine).
• You carry or wear a medical alert card, bracelet or necklace.

After 3 months, the doctor will decide how often follow-up needs to be done. If there are no serious problems, follow-up may be done less frequently as time passes and the risk of problems becomes lower.

Your general health and how well the bone marrow is working will be checked. You may have to adjust your medicines and activities. You will discuss problems and concerns with the healthcare team.

If there are no problems, you will have follow-up visits once a year with your family doctor or primary oncologist. You may also sometimes go for an evaluation at the transplant centre.

By the end of the first year, the immune system usually returns to normal and the bone marrow produces blood cells normally again. It may take longer for some people, especially if they are on immune-suppressing drugs.

About 1 to 2 years after a stem cell transplant, most people need to be immunized with vaccines that are commonly given in childhood (such as polio and measles). The healthcare team will talk to you about which vaccines you should be given to help restore the immune system.

Tests are often part of follow-up care. You may have the following tests:

• a complete blood count (CBC) to check for abnormal blood cell counts
• blood chemistry tests to show how well certain organs are working
• imaging tests, such as a chest x-ray, a CT scan, an MRI or an ultrasound, to get helpful information about the organs
• a bone marrow aspiration and biopsy to follow up after the results of the blood tests or if new symptoms develop

If your cancer comes back (recurs), your healthcare team will assess you to determine the best treatment options. If the cancer does come back, it usually happens within 2 years after the transplant. But it can also come back several years later.