Anyone with KRAS G12V mutation with an alternative approach to SoC?

Posted by aj @eceaj, Sep 20 7:29am

Hi everyone,
My husband was diagnosed with pancreatic cancer, age 55 and had Whipple surgery in April. Upon diagnosis he was staged 3 and after the operation he received chemotherapy; Folfrinox first, and then switched to Irinotecan ( liposomal Folfrinox) due to tolerance issues.
After 3 cyles he started having really bad stomach pains and a pet scan revealed that the cancer had metastasized to his liver. Our oncologist switched him to Gem/ Abraxane which immediately took care of the pain and he's tolerating it wonderfully. I have been doing a lot of reading on mutations and G12V unfortunately seems very resistant to chemo. I know there's a trial going on but i was wondering if anyone here has had any alternative approaches to systemic therapy, a different or additional drug maybe? Any insight is appreciated, i'd love to hear from those of you who've battled this disease with the same mutation.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

I also have G12V, have gone through Folfirinox, Gemcitabene/Abraxane, and Naliri. I'm now on Capecitabene which is a pill form of 5-FU I believe, and I'm waiting to get into a clinical trial with a pan-KRAS inhibitor. If you can find a clinical trial with a pan-KRAS inhibitor (such as RMC-6236) that is recruiting it would be worth investigating. PanCan can help you research this.

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My husband is also Stage 4 Mets to liver. Also G12 V . He has been on Gemcitabine and Abraxane for 3 years and 4 months - Initially he was in a trial that used pamrevulab that was combined with the gemabraxane. Trial was not successful. His primary tumor shrunk by half and last February he had radiation to kill it. His tumor markers are normal. We have gotten years beyond his initial prognosis. He still plays golf and is very active most days- not chemo day and a couple days in the his two week cycles when he’s exhausted. He went to two week cycles about 18 months ago because of platelet issues. Radiation was not an option when he was diagnosed. RMC6236 trials didn’t exist. Drugs they are using now weren’t discovered yet. So keep the faith - one day at a time. God Bless

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Profile picture for dalegantous @dalegantous

I also have G12V, have gone through Folfirinox, Gemcitabene/Abraxane, and Naliri. I'm now on Capecitabene which is a pill form of 5-FU I believe, and I'm waiting to get into a clinical trial with a pan-KRAS inhibitor. If you can find a clinical trial with a pan-KRAS inhibitor (such as RMC-6236) that is recruiting it would be worth investigating. PanCan can help you research this.

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Are you stable on capcitabine? How did you do on Naliri? I’m told that if one did filfurinox for quite awhile, Naliri and Capcitabine may not be effective because the body recognizes 5FU and becomes resistant. Wondering if you are experiencing that. I hope not!

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I had progression with Naliri, but so far not with capecitabine although the ct scan was taken after only one cycle so who knows. Just starting the capecitabine induced hand-foot syndrome.

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Thank you everyone for the replies, it's so helpful hearing from others. We have a pet scan coming up at the end of the week, we'll get an idea of how he has been responding to Gem/Abrax.

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Profile picture for gracect @gracect

My husband is also Stage 4 Mets to liver. Also G12 V . He has been on Gemcitabine and Abraxane for 3 years and 4 months - Initially he was in a trial that used pamrevulab that was combined with the gemabraxane. Trial was not successful. His primary tumor shrunk by half and last February he had radiation to kill it. His tumor markers are normal. We have gotten years beyond his initial prognosis. He still plays golf and is very active most days- not chemo day and a couple days in the his two week cycles when he’s exhausted. He went to two week cycles about 18 months ago because of platelet issues. Radiation was not an option when he was diagnosed. RMC6236 trials didn’t exist. Drugs they are using now weren’t discovered yet. So keep the faith - one day at a time. God Bless

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Was the Gem / Abrax throughout the 3 years continious? Meaning did he receive chemo on a regular basis (weekly, biweekly etc) , or were there breaks such as 6 months on 4 months off ? Up until recently I hadn't heard of chemotherapy ever being administered for this long, but there seems to be cases on this forum where patients receive chemo for prolonged periods.

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My wife has the same diagnosis and has progressed through Folfirinox and Gemcitabine chemo over the past 14 months. She just got into a Phase 1 Study for a new KRAS inhibitor specific to the G12V mutation. We’re hoping it will work as well as the pan-RAS drug from Revolution Medicines.

The company is Quanta Therapeutics and the drug designation is QTX-3544 - also a daily pill regimen (Study #: ClinicalTrials.gov ID NCT06715124). She just started her first dosing yesterday at Huntsman in Salt Lake City.

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Profile picture for aj @eceaj

Was the Gem / Abrax throughout the 3 years continious? Meaning did he receive chemo on a regular basis (weekly, biweekly etc) , or were there breaks such as 6 months on 4 months off ? Up until recently I hadn't heard of chemotherapy ever being administered for this long, but there seems to be cases on this forum where patients receive chemo for prolonged periods.

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I’ve heard of patients being on 5FU for 10 years and counting (per one of my wife’s doctors at Fred Hutchinson in Seattle). Not common or likely, but anything is possible.

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Profile picture for aj @eceaj

Was the Gem / Abrax throughout the 3 years continious? Meaning did he receive chemo on a regular basis (weekly, biweekly etc) , or were there breaks such as 6 months on 4 months off ? Up until recently I hadn't heard of chemotherapy ever being administered for this long, but there seems to be cases on this forum where patients receive chemo for prolonged periods.

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He had one break of 6 weeks this past February to do the radiation,
He started on 3 weeks a month and then switched to twice a month for platelets to recover in between.
Otherwise, no break. But life is good, considering.

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