My daughter has a pHGG with the H3.3K27 mutation. We are considering a vaccination Clinical trial when she completes radiation. Our gut feeling is to do the Clinical trial that is specific to the H3.3K27 mutation as opposed to trial that is for either 3.3 or 3.1. Do you agree? Also, we have recently received some more specific information about her tumor genomic alterations (has Atrx, fgrr1, h3f3a, pik3ca) De we need to take that into consideration when choosing a trial? Thank you.
Asked by AnonymousA number of users have reached out with specific questions regarding their own child’s health. However, it's always a challenge to give responsible advice on such specific health-related questions in this blog Q/A format and as such, I would highly advocate for your direct and continued interactions with your clinical team or engagement of additional consultations at other institutions with these questions in hand.
I do, however, think that your approach as an informed patient that is asking questions at this level of detail/knowledge is admirable and a model for all patients. As you highlight, High-Grade Gliomas represent a complex set of genomic alterations and to my knowledge, there has yet to be defined a "correct" answer in the context of specific treatments though as you note clinical trials are underway. The gene names and acronyms may be daunting, but questions about the meaning of such information and its potential for informing therapy or your own decisions as a parent are answerable and appropriate--even if the answer is indeed that "we don't know." The mutations you note are being constantly informed by what is a rapidly growing knowledge-base. So keep asking the questions--and often.
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