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Pancreatic tumor genotype KRAS G12c, removed but one node positive

Posted by bb21 @bb21, Nov 20, 2021

Have had Whipple which revealed one positive node. Genotype KRAS G12C, a rare type, highly aggressive and loves to become resistant to treatment. I underwent chemo with Fulfurinox combo, then surgery when the genotype was identified. Platelet challenge and later detection a few small lesions in the liver led me to go from post surgery chemo to a Clinical trial with Amgen510 combo that included a monoclonal. Responded well for about 6 weeks and now the lesions are growing again. Is there anything that others have tried to combat this genotype or any other clinical trials available for me to try? I am fighting but need additional tools. HELP

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beachdog | @beachdog | Nov 21, 2021

@bb21 sorry to hear of your challenges. Do you have complete genetic analysis of your tumor and somatic? You can submit your reports to pancan.org and they can identify a trial if one is available. If your can travel to a National Cancer Institute medical center (ie Mayo, Moffitt, Sloan-Kettering etc) make an appointment asap. Good luck.

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asingh90 | @asingh90 | Jun 3, 2022

Hello, I'm sorry to hear that the lesions are growing again. I did a quick search on the clinical trials government website on your rare KRAS G12c mutation and a lot of trials turned up. Here are the first few, but a total of 38 possibilities showed up. I highly suggest you go to clinicaltrials.gov and search for KRAS G12 as soon as possible. Unfortunately, this discussion forum is not letting me post links. Please search on the clinical trial website for your mutation. Please let me know if you need help searching. Thanks

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1 reply
bb21 | @bb21 | Jun 4, 2022
In reply to @asingh90 "Hello, I'm sorry to hear that the lesions are growing again. I did a quick search..." + (show)
@asingh90

Hello, I'm sorry to hear that the lesions are growing again. I did a quick search on the clinical trials government website on your rare KRAS G12c mutation and a lot of trials turned up. Here are the first few, but a total of 38 possibilities showed up. I highly suggest you go to clinicaltrials.gov and search for KRAS G12 as soon as possible. Unfortunately, this discussion forum is not letting me post links. Please search on the clinical trial website for your mutation. Please let me know if you need help searching. Thanks

Jump to this post

I visit clinicaltrials.gov often. Actually had two studies lined up but they want naive patients as far as former treatments. With this mutation I think the Pharma's are being naive. We have to try whatever we can to try for stability much less tumor size reduction. Thank you so much for researching for us. It is much appreciated.

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1 reply
beachdog | @beachdog | Jun 4, 2022
In reply to @bb21 "I visit clinicaltrials.gov often. Actually had two studies lined up but they want naive patients as..." + (show)
@bb21

I visit clinicaltrials.gov often. Actually had two studies lined up but they want naive patients as far as former treatments. With this mutation I think the Pharma's are being naive. We have to try whatever we can to try for stability much less tumor size reduction. Thank you so much for researching for us. It is much appreciated.

Jump to this post

Have you actually submitted requests to join trials that have been rejected? We have found that the prerequisites for trials are wish lists of the researchers. My wife hasn't technically qualifed based on prerequisites but has been accepted into 2 different trials because they addressed particular mutations her tumor expressed. We turned those down because they're phase 1 trials and we opted for first line treatments in order to bide time for something more promising. We're currently waiting on acceptance into an immunotherapy trial for breast cancer that aligns with her specific mutations. It's a phase 3 trial so there's more knowledge on safety and efficacy. Our oncologist is fairly confident that she'll be accepted and he's in direct contact with the researcher.

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1 reply
bb21 | @bb21 | Jun 5, 2022
In reply to @beachdog "Have you actually submitted requests to join trials that have been rejected? We have found that..." + (show)
@beachdog

Have you actually submitted requests to join trials that have been rejected? We have found that the prerequisites for trials are wish lists of the researchers. My wife hasn't technically qualifed based on prerequisites but has been accepted into 2 different trials because they addressed particular mutations her tumor expressed. We turned those down because they're phase 1 trials and we opted for first line treatments in order to bide time for something more promising. We're currently waiting on acceptance into an immunotherapy trial for breast cancer that aligns with her specific mutations. It's a phase 3 trial so there's more knowledge on safety and efficacy. Our oncologist is fairly confident that she'll be accepted and he's in direct contact with the researcher.

Jump to this post

Thank for your inquiry. I have been in one trial with an immunotherapy and responded for 6 weeks but then became resistant. Two other studies were identified but both cut me out last minute, one due to too many treatments with other agents; the other because I had been treated with the immunotherapeutic. Of course we will try anything to try and hit a winner but the pharmas/researchers are targeting approval first. They really need to add arms for compassionate administration.

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