C-KIT Mutation Treatment Options

This topic has 4 replies, 3 voices, and was last updated 7 years, 5 months ago by New1.

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- October 3, 2018 at 4:24 pm
- Quote
AMcReader
Participant
Hello friends,

I just got the FoundationOne report identifying the mutations of my brain tumor and I learned several things, two of them being 1) my tumor has a number of mutations and 2) one of those mutations is the CKIT mutation.

I’m currently on Nivolumab and responding well but I’m always trying to learn more about other options in case things start going less favorably. So, I’m wondering if anyone has been on any treatment specific to the CKIT mutation. If so, what was your experience?

Sending love to you all!

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- - October 3, 2018 at 5:52 pm
  - Quote
  Janner
  Participant
  Search for old posts from Jerry from Fauq. He was on Gleevec for a C-Kit mutation. C-Kit is more common in mucosal melanomas than cutaneous.
- - October 3, 2018 at 6:28 pm
  - Quote
  ed williams
  Participant
  Hi Amanda, as far as having C-kit mutation and brain mets, i haven't come across anything specific with that before. In the last year there has been some advancement on how brain mets are treated, based on checkmate 204 trial and another brain met trial out of Australia. Here are two links, one from last Dec and the second from June of 2018. I hope you find them helpful in your journey!!! https://www.onclive.com/web-exclusives/expert-says-melanoma-clinical-trials-should-include-more-patients-with-brain-mets?p=1  https://www.youtube.com/watch?time_continue=15&v=0FAZ-NPM_DU
  - October 3, 2018 at 6:30 pm
    
    Quote
    ed williams
    Participant
    
    https://www.onclive.com/web-exclusives/expert-says-melanoma-clinical-trials-should-include-more-patients-with-brain-mets?p=1
  - October 25, 2018 at 7:05 am
    
    Quote
    New1
    Participant
    
    My father has the c-kit mutation stage 4 with no brain involvement. After failing newer immunotherapys he was put on gleevec(imatinib) by his oncologist. We also found another drug called tysinga after doing a literature search. The two studies I found were around a 100 people showed a benefit for around 6 – 9 months in those who responded. Those are generalizations I can recall off the top of my mind not exact numbers. First couple scans showed mixed results – some areas stable some worsening. We hope and maintain.

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