AA3 idh1 mutant with subtotal resection

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AA3 idh1 mutant with subtotal resection

by SLY1987 on Sat Jun 29, 2019 03:46 AM

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I have been reading a lot about how aa3s idh1 mutant with gross total resection have favorable prognosis. What about subtotal resection? My fiancé had 70% removal of an aa3 idh1 mutant and will start radiation and chemo in July. I was too nervous to ask the surgeon about it at the time, but I guess I should have because now I'm driving myself crazy researching. Any information or personal experiences would be appreciated. Thank you!

RE: AA3 idh1 mutant with subtotal resection

by ADVO2019 on Fri Dec 20, 2019 05:56 PM

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On Jun 29, 2019 3:46 AM SLY1987 wrote:

I have been reading a lot about how aa3s idh1 mutant with gross total resection have favorable prognosis. What about subtotal resection? My fiancé had 70% removal of an aa3 idh1 mutant and will start radiation and chemo in July. I was too nervous to ask the surgeon about it at the time, but I guess I should have because now I'm driving myself crazy researching. Any information or personal experiences would be appreciated. Thank you!

I wanted to ask how your fiance has been doing.  I just joined this website, as I was an advocate for my 26 year old son who had the same diagnosis with the same mutation in the IDH1 gene as well as his TP53 gene was 86.7% destroyed at the time he was finally diagnosed. My son had a hemmorhagic stroke in the ambulance, being moved from the inital hospital to the treating hospital and his care in the treating hospital was a horrible experience.  I have learned so much about the disease and I can share the vitamin regimen that helped my son when he came home along with what the treatment plan should be for someone with AA3.  If you would like, please reach out and let me know area of the brain her tumor was in, and what theyve done for you so far.  I can share some experience with you of what worked best for my son if you'd like. God bless!

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