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My 10 year old daughter with the IDH1 mutation has just finished carboplatin vincristine as a treatment. She has 2 diffuse astrocytomas. The last 2 MRI's have been stable. We have been watching these tumors for 5 years prior to treatment and started chemo because the tumor in her thalamic region was slowly growing . Only the tumor in her right frontal lobe was biopsied(this tumor has been stable for 3 years now), so we truly don't know what the second tumor is in her thalamic region. Doctors are assuming it is the same type. The tumor in her right frontal lobe looks diffuse on an MRI, the tumor in her thalamic region looks like a small round marble. The IDH1 mutation scares me because it may have the potential to transform to a higher grade tumor. Does Mayo have any data and/or advice regarding a 10 year old with IDH1 mutation?
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This is a very difficult question. We too would assume the two lesions would be the same, but that is not guaranteed. The IDH1 mutation was not even discovered in brain tumors until 2008, and is predominately seen in adults; therefore, we have limited data in children with this mutation. Unfortunately I cannot give medical advice over the interent per specific cases, if you would like to request an appointment please click on the “request an appointment” button on this page.. It is unclear at this time if IDH1 mutated tumors in children progress to higher grade lesions, but that is something that we certainly need to think about.