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December 3, 2003 Teleconference Childhood Brain Tumors: An Update on Survivorship Question and Answers

Originally published on November 17, 2009
Most recently updated on July 24, 2012

December 3, 2003 Teleconference Childhood Brain Tumors: An Update on Survivorship Question and Answers

Question: Can you comment on the issues related to seizure/anti-epileptic drug effects in regards to these cognitive (learning/processing) and school issues? How can you separate seizure/meds from learning/attention impairments secondary to chemo/radiation?

Answer: Some of the medications used to treat seizures may have side effects that affect learning (e.g., fatigue, increased difficulty sustaining attention and staying on task). In addition, the underlying reason for the seizure may involve injury to the brain that produces learning problems. In these cases, it is not possible to determine what the exact cause of the learning problem might be; it could be related to brain injury associated with seizures, with side effects of anti-seizure medications, to late effects of chemotherapy and/or radiation, or to some combination of the above. There is no safe way to determine the exact cause of learning problems in these cases. However, many of the strategies for dealing with late effects of cancer treatment may also be quite helpful with the difficulties associated with seizures and their treatment.


Question: Does Dr. Armstrong have a transcript of his talk? We would have liked to hear the other questions and answers people sent. Is there any way to share those?

Answer: CBTF and NBTF will post the teleconference on their respective websites so parents can listen in again at their convenience. All Questions and Answers will be posted as well.


Question: Does Dr. Armstrong have a website or a book he can recommend for further information on this topic?

Answer: Yes. There are two resources that may be very helpful:

1. Keene, N. (2003). Educating the child with cancer: A guide for parents and teachers. Washington, DC: Candlelighters Childhood Cancer Foundation. (available free of charge for parents, teachers or healthcare providers of children with cancer or survivors of cancer by calling 1-800-366-CCCF).

2. National Cancer Policy Board (2003). Childhood Cancer Survivorship: Improving Care and Quality of Life. M. Hewitt, S.L. Weiner, & J.V. Simone (Eds). Washington, DC: The National Academies Press. (Available at www.nap.edu).


Question: How many childhood brain tumor survivors are now adults, including malignant and benign tumors? Answer: There are 26,000 survivors.


Question: Based on your knowledge, what percentage of a chance does my daughter have in getting a brain tumor for the third time? 1st time astrocytoma/ependymoma (brain) and 2nd time - astrocytoma (brain, spine). Currently 12 1/2 -year survivor. Answer: This is not a question that can be easily or accurately answered in a general sense, since the risk for second or third tumors is relatively small, and depends a great deal on the type of tumor, how it was treated, and whether there are other risk factors for each particular child. You should discuss this issue with your pediatric neuro-oncologist who knows your child's situation best.


Question: My 24-year-old cousin was diagnosed with a medulloblastoma 8 years ago. He has been healthy for all these years post-treatment and has now developed kidney stones. Is this more than likely a direct link to the high dose cyclophosphamide? If so, what is the percentage of long-term effects in this area with patients receiving this agent?

Answer: This is not a question I am able to answer. You should discuss this with your cousin's oncologist to determine the specific relationship between your cousin's treatment and any specific kidney-related late effects. Since treatment as changed over time (both in terms of the specific medications used and how they were used), the oncologist who treated your cousin is best prepared to answer this question.


Question: Could Dr. Armstrong repeat the name of the medication that is being studied at St. Jude? Would our neurologist know more about this?

Answer: The medication being studied in the NCI sponsored clinical trial is methylphenidate. Since the initiation of this trial, a number of new medications have begun to be used to treat attention problems. You should speak with your neurologist to determine whether one of these medications might be helpful, and to determine how best to use it. Children treated for brain tumors may react differently from other healthy children to these medications. Lower starting doses and monitoring for unpleasant reactions may be important things to consider if using these medications with children treated for brain tumors.


Question: Can Dr. Armstrong speak to problem that BT children have in regard to the loss of ability to "screen" [what they say]? How do you help a child understand that they need to think about what they say before they say it? Is it possible to help them or is this out of their control?

Answer: We are just learning about the effects of brain tumors and their treatment on children's ability to detect both visual and verbal social cues. Many children with brain tumors do have difficulty interpreting social cues from others and as a result respond in a way that causes social difficulties. There is no proven approach to helping children with this difficulty, although rehearsal of appropriate responses does seem to help.


Question: How soon after treatment, (radiation, chemo) do developmental problems typically appear?

Answer: There are two kinds of problems, acute and late effects. Acute problems include impulsivity, slowed motor speed, extreme fatigue, and problems remembering. These are often related to the immediate side effects of chemotherapy or other medications. These can occur immediately after the initiation of treatment. Late effects are usually not detected until one to two years after completion of radiation or chemotherapy, and new difficulties may become noted for many years after treatment. These are usually related a child failing to acquire later skills at expected time points.


Question: Could Dr. Armstrong address, if even only briefly, what affects a child 16 years old and now 17, s/p partial resection temporal lobe, current radiation to be followed by chemotherapy? He has had a memory test (after surgery) prior to radiation that showed only small dips in verbal memory recall. At best, what effects are there usually on the pediatric/adult child?

Answer: In general, if there is no significant injury to normal brain tissue due to tumor and/or surgery, then the effects of radiation and/or chemotherapy are likely to involve slightly slower processing speed, possibly some minor difficulty with sustaining attention, and perhaps some minor problems with visual-motor skills. In general, the older a child is at the time of treatment, the fewer and less severe the problems encountered. That said, the type of chemotherapy and the intensity of radiation (e.g, dose) and individual reactions to the treatment can affect what will be seen long-term. It is very important to discuss the specifics of your child's treatment and the possible risks with his neuro-oncologist.


Question: I appreciate being able to listen in on the teleconference given today regarding BT survivorship issues. This addressed many of the questions that I have right now. My 8 1/2 year old son is a 4-year brain tumor survivor and it is so encouraging to hear that survivorship is getting more attention now. I only signed up late last night, so I didn't get a copy of the article that was mentioned in the email. Please let me know about any information that I can get that discusses this matter.

Question: Dr. Armstrong mentioned that you all have a brochure that helps educate teachers/ parents about long-term learning effects in childhood brain tumor survivors. I have not received my packet for the conference and it may be in there? I am really interested in getting these brochures to give to parents and schools. Please tell me if you have this brochure and how many I can get.

Answer: The brochure (School and Learning Issues for Children with Cancer) was developed with support from the Health Foundation of South Florida and is distributed in downloadable format on the website of the Florida Division of the American Cancer Society. To reach the download, go to www.cancer.org.


Question: How can I get involved as an advocate?

Answer: CBTF has a Parent-to-Parent Network, which links parents looking for support with a trained parent volunteer who has been through something similar. The North American Brain Tumor Coalition sponsors Brain Tumor Action Week each year in May. Parents can help raise awareness.


Question: My daughter had only surgical intervention (highly successful) for oligodendroglioma at 5 years old. She is now 9 and has clean MRIs since. We are working through the slower processing (including reading), fine motor skills, and other of your common CBT effects mentioned. Do you have any data on the frequency of recurrence, the signs of recurrence, and if any alternative strategies (diet, supplements, vitamins etc) may be effective for prevention and general brain health?

Answer: These are all questions that should be discussed with the physician who knows your child best. The location of her tumor, tumor markers, and other features are important pieces of information in assessing risk for tumor recurrence, and your child's physician is the person best able to help you work through this information. Likewise, discussions about supplemental dietary approaches should be discussed with your child's physician. Most of these are safe, but there may be aspects of your child's case (e.g., other medication she/he might be taking) that should be considered before using other supplements. Despite the fact that these are readily available over the counter, some may have adverse effects if used without consultation with your child's physician.

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