Long-Term Side Effects of Transplant
Intensive transplant therapies can cause major effects that may not become apparent for months or years.
Major long-term concerns are second primary cancers and side effects of total body irradiation, including thyroid dysfunction and sterility.
How well a child copes with the initial transplant does not predict life-long risk of developing complications.
Some children struggle through transplant with many challenges, but experience relatively good health after cure. Some who sail transplant experience complications in later life.
All children who receive a stem cell or bone marrow transplant should receive close life-long follow-up care to ensure any health concerns are addressed early.
Second Primary Cancers
Children who receive a stem cell or bone marrow transplant have a higher risk of developing a second cancer, particularly Acute Myeloid Leukaemia (AML). This risk is increased if total body irradiation is used in the conditioning stage.
Transplants are relatively new and rarely used for retinoblastoma, so the long-term effects are not clear. The doctor can explain the known risks based on your child’s RB1 genetic status and specific treatment.
Total Body Irradiation Side Effects
Total Body Irradiation is rarely used in treatment of children with retinoblastoma due to the significant associated complications when the child has a constitutional RB1 mutation.
If your child does have total body radiation as part of the conditioning protocol, all the side effects of regular external beam radiotherapy will be a risk for her. These are detailed in the radiation section. She should be monitored very closely for any of these side effects.
In addition, she may experience thyroid dysfunction and/or sterility.
Total Body Irradiation poses a 25 – 50% risk of low thyroid function due to decreased production of thyroid hormone. Medications containing thyroid hormone will be prescribed if this happens.
Total Body Irradiation often causes delayed puberty. The risk is slightly higher in girls, and is reduced when radiation is given in several daily doses over a few days. Hormone injections can be given if your child experiences delayed puberty.
Total Body Irradiation usually causes children to become sterile. Girls will not become pregnant and boys will not produce sperm. This is not a guaranteed outcome however. There have been many reports of adults, treated with transplant as children, naturally conceiving healthy babies.