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Website Links
Below are some links to resources that you might find helpful. If you run
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Book
Reviews
Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 2nd Edition
by Nancy Keene, Click here for an excerpt taken
from Chapter 1 of this book.
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Articles
Long-Term and Late Effects of Childhood CancerTreatments
From the Leukemia & Lymphoma Society Fact Sheet
Long-term effects, such as fertility outcomes, are medical problems
that may occur in people following certain cancer treatments. Late effects are secondary
conditions that arise following certain cancer treatments, such as leukemia secondary to
certain chemoradiotherapies .
Medical Problems in Children
These include:
·
Learning Disabilities: Some children who have been treated for
leukemia or lymphoma are at risk for developing learning disabilities as a consequence of
their treatment. These can start immediately or several years after treatment. Typically,
areas where performance may be affected are: mathematics, spatial relationships, problem
solving, attention span, and concentration skills. Intrathecal and intravenous
methotrexate and/or radiation to the brain can sometimes cause damage to the central
nervous system. The degree of damage depends on the dose of radiation, the child's age,
and gender. Younger females are at higher risk than older children are or teens.
Growth Problems: The hypothalamus and pituitary gland are located in the brain and
control many body processes, including growth and reproduction. It is generally believed
that 2400 rads or more of cranial spinal radiation can stop or slow the growth of
children. Children who receive total body irradiation prior to stem cell transplantation
may also experience delayed growth.
According to a report in the July 1, 2002 issue of the Journal of Clinical Oncology,
growth hormone (GH) replacement is safe and effective in survivors of childhood ALL with
GH deficiency. The researchers found no association between GH therapy and ALL relapse or
development of a second malignancy at the seven and 11-year landmarks.
An increased tendency toward overweight and obesity has been noted among survivors of
childhood acute lymphoblastic leukemia (ALL). Risk factors for obesity include cranial
radiation, female gender and age 0-4 at diagnosis of leukemia.
The growth of children who receive cranial radiation or craniospinal radiation should be
followed closely by a doctor.
·
Fertility Problems: Survivors of leukemia and other childhood cancers
treated with modern conventional therapy have relatively low risk for infertility or
delayed or impaired puberty; most go on to have normal fertility and healthy offspring.
However, a small number are unable to have children. Some young children who receive
radiation to the brain do not experience puberty at the appropriate age. A very small
percentage experience premature puberty, while in other children, puberty is significantly
delayed.
Boys treated with cytoxan or radiation to the testes may have abnormal testosterone levels
and sperm counts. One hundred to 500 cGY of radiation may cause temporary stoppage of
sperm production. More than 600cGY of radiation usually results in permanent sterility.
Chemotherapy can be harmful to sperm production, however, production may resume months to
years after chemotherapy ends.
Young girls who have had radiation are at risk for primary ovarian failure. The effect of
radiation on the ovaries is dependent on age and dosage. Chemotherapy can also cause
primary ovarian failure, but it usually takes very high doses to cause damage. Premature
menopause has been noted in some female survivors of childhood blood cancers.
The ability to have a normal sex life is not affected.
·
Thyroid deficiency: Children who receive total body irradiation prior
to stem cell transplantation or radiation therapy for lymphoma may have low thyroid
function (hypothyroidism). An underactive thyroid can also develop in patients receiving
chest and neck radiation therapy for Hodgkin lymphoma. To a lesser extent, other thyroid
abnormalities, including hyperthyroidism and thyroid tumors, have been reported.
Chemotherapy typically does not affect thyroid function.
·
Cardiovascular Disorders: Heart problems (heart muscle injury,
chronic heart failure) may occur months or decades after treatment with anthracyclines
(Adriamycin, idarubicin or daunomycin), high doses of cyclophosphamide, or chest
irradiation. The heart muscle damage is usually related to the cumulative dose of
anthracyclines, many of which are used to treat acute myelogenous leukemia. High-dose
cyclophosphamide, part of the preconditioning regimen for stem cell transplantation, can
contribute to chronic heart failure. Children appear to have less tolerance to doses of
multiple chemotherapeutic agents than adults do, and when chest radiation is combined with
these chemotherapeutic agents, the risk of heart failure is possible at lower doses of the
drugs. The number of leukemia survivors who develop this late effect is quite small, but
regular check-ups are necessary.
·
Dental Abnormalities: Dental abnormalities can be a side effect of
treatment for leukemia, especially for children who are treated with cranial radiation.
The most common problems are failure of the teeth to develop (dental or tooth agenesis),
arrested root development, microdontia (unusually small teeth), and enamel abnormalities.
·
Other Long-Term Effects: Other important physical outcomes that can
have a significant impact on quality of life include: osteoporosis, scoliosis, eye
problems, such as cataracts and glaucoma, lung complications, and immunologic
complications.
Follow-Up Care
Ruth Hoffman, Executive Director of The Candlelighters Childhood Cancer Foundation says,
"Survivors need expert follow-up from trained professionals to improve quality of
life through early detection and intervention for late effects from treatment."
In the past, most survivors of childhood blood cancers were on their
own after treatment ended. Knowledge of the late effects associated with treatment
continues to increase. Many institutions now have late effect clinics and provide a
multi-disciplinary approach to monitoring and supporting survivors.
Nancy Keene, a well-known patient advocate and author of books for
families of children with cancer has identified follow-up clinics for childhood cancer
survivors. These follow up clinics provide comprehensive services to survivors of
childhood cancer. See www.patientcenters.com/press/clinics_2003.html
for a list of clinics across the United States.
Important Resources
The Leukemia & Lymphoma Society
For more information on leukemia, lymphoma, myeloma and other blood cancers call The
Leukemia & Lymphoma Society at (800) 955-4572, or you can access our Web site at www.LLS.org. Through the Society's Information Resource Center,
callers may speak directly with an Information Specialist, Monday through Friday, 9 a.m. -
6 p.m., Eastern Time. To chat online with an Information specialist, Monday through
Friday, 10 a.m. - 5 p.m., Eastern Time go to www.LLS.org and click on Live Help. You can also contact an
Information Specialist via email at infocenter@LLS.org.
The Pediatric Oncology Resource Center
has an informative Web site on cancer survivorship at www.acor.org/ped-onc/survivors/index.html.
Children's Oncology Group Long Term Follow up Guidelines, 2004
is available on their Web site
www.childrensoncologygroup.org/ then
click on Guidelines.
Office of Cancer Survivorship of the National Cancer Institute
http://dccps.nci.nih.gov/ocs
Publications
Childhood Cancer Survivorship: Improving Care and Quality of Life (2003) National
Cancer Policy Board (NCPB), Institute of Medicine (IOM). ISBN #0-309-08898-4. Or see, www.nap.edu/books/0309088984/html/
Childhood Cancer Survivors by Nancy Keene, Wendy Hobbie, and
Kathy Ruccione. Copyright 2000, O'Reilly & Associates, Inc.
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