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Follow-up for patients after allogeneic stem cell transplantation

Implementation

During the first weeks after the patient is discharged, the patient will have an outpatient consultation with both a doctor and nurse.

At the consultation, the following are focused upon:

  • nutritional status
  • blood tests
  • need for transfusions
  • physical, psychological, and social rehabilitation
  • infection status
  • acute GVHD

An important part of the blood testing in the first 6-12 months is to follow the level of ciclosporin and CMV-PCR. Most patients can stop taking ciclosporin 1 year after the transplant. 

If the patient has newly diagnosed or a recurrence of GVHD, it may be necessary to increase the dose of ciclosporin, possibly in combination with steroids or other immunosuppressant.

After returning home, follow-up visits are divided between the regional and local hospitals.

The vein catheter is removed when there is no longer a need for transfusions and the patient is able to take sufficient amounts of per oral fluid and solid food, which is usually after 3 months.

Further follow-up

The patient will complete comprehensive testing of blood and body function after 3, 6, 9, and 12 months. At these visits, the patient will also be offered to speak to a nurse. The nurse will convey information to relevant cooperation partners, for instance a social worker, psychologist, the school, and the Cancer Registry.

Women receive regular follow-up by a gynecologist with emphasis on hormone treatment and development of chronic GVHD. Eye and lung examinations are also performed at some visits.

Thereafter, the patient is seen annually for 5 years.

Bone marrow function and the immune system during the first 3 months

The immune system of a transplanted patient needs at least 12 months before it functions normally, provided the patient does not have chronic GVHD. The patient will therefore be more susceptible to infections than normal and runs a certain risk for bleeding if the thrombocyte count is considerably reduced. The problem decreases gradually, but it is very important that signs of infection or bleeding are taken seriously.

Patients receiving steroid treatment for GVHD will have a reduced immune system long after the transplantation. It is therefore especially important that this patient group is taken seriously when contacting a doctor with suspicion of infection. If adequate treatment is not started immediately, there is a risk of sepsis with serious infections.

Precautions the patient should follow for the first 3 months:

  • avoid contact with people who are obviously infected with a cold or have a known contagious illness
  • avoid contact with children with pediatric illnesses or people who have been in contact with pediatric illnesses
  • visitors should wash their hands
  • avoid contact with household animals
  • follow food restrictions to avoid growth of microorganisms

Normal household cleaning is sufficient.

It is recommended that the patient uses a face mask for the first 3 months after the transplant if staying at the hospital or when in close contact with many people. When outside in fresh air, it is not necessary to use a face mask. The patient should avoid public transportation, the cinema, theater, and places with large amounts of people, in the first three months after the transplant.

Children

Children should be taken out of day care/preschool about 14 days before the patient returns home. Children should not be allowed to attend day care/preschool in the first period after the patient returns home due to the risk of infection.

Psychological

Being seriously ill over a long period of time is a great psychological burden. Treatment and consequences of treatment may be very straining in periods for both the patient and family. Often, the patient will feel depressed after returning home and it may take a significant amount of time before resuming normal activity. The patient and family must adjust their expectations for life.

It is important that the patient and their family allow time to process their experiences from the transplant and illness period. Some will benefit from psychological care or other therapy.  

Sexual relations

Long-term illness and treatment is challenging for relationships. The interaction between partners may have changed and it may be difficult to return to the state before the illness. Physical changes in both men and women may also influence sexual relations.

Even if the possibility of pregnancy is small after treatment, prevention is recommended for the first year. After the first year, there are no special precautions.

Back to work/school/studies

The time at which to resume work/school/studies depends on how quickly the patient recuperates after the transplantation. In most cases, it is recommended that the patient does not start working until 6 months after the stem cell transplantation. It is also important that the patient does not return to work before he/she feels ready. We recommend that the patient discusses this with their closest contacts, health personnel and/or other professionals. The patient should also plan with their employer before resuming work.

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