Anyone else on Daraxonrasib (RMC-6236)?

Posted by howleegirl @howleegirl, May 8 5:59am

Waiting for the approval for my husband to start daraxonrasib. (the new and exciting drug just fast tracked by the FDA) Doc says he's a great candidate for this drug. Anyone else on this? I know about the awful rash you get from seeing the senator on TV. Doc has also styopped all treatment since April 11th. THAT kinda scares me?

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Profile picture for mcoplien @mcoplien

@panacea I am waiting for the pill. The Cancer Center I am at Carbone in Madison WI has submitted be as a candidate for the PILL but not pill yet, they say it will be end of July or end of Summer before I get it. I am not sure anyone has got it yet as part of the expanded trial.

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@mcoplien try to explore nearby states as that will give you the best possibility.

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Profile picture for hofhope @hofhope

Thank you all for your discussions and helpful suggestions here. My fiancé was diagnosed with stage 4 pancreatic cancer on the tail but metastasized to the liver in Sept 2025. He has gone through 12 rounds of FOLFIRINOX which shrank the cancer on the tail of his pancreas from 2.9 cm to 1.1 cm after 6 rounds. His UCI oncologist then ordered radiation treatments on the pancreas tail and Y90 on his livers. However, he started to have ascites about 3 weeks ago and had 3 parenthesis already so far as the fluids are accumulating very fast causing extreme pains in his lower abdomen and inability to eat…… He is on OTC Tylenol which helps to some extent. His oncologist is processing for daraxonrasibs but it seems to be taking long. Does any one of you have similar pain experience and any suggestions? I am thinking of taking him to Emergency Room to get some help. Any suggestions are highly appreciated. He is 65 years old and was quite healthy before this was discovered by accident. God bless you all!🙏

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@hofhope How is your fiance doing?

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Profile picture for nbcesq @nbcesq

I'm scheduled to start daraxonrasib this week, at Johns Hopkins. I've had some progression of metastatis to the liver and lungs on 5 F/U + irinotecan (the last chemo regimen remaining for me), so this new medication has come at just the right time for us! Obviously, I can't say what it's like being on the drug yet, but it's clear that there are a number of side effects possible. I'll need to return to JHH every couple of weeks to have those monitored, so that they can adjust my levels, as needed. I'm hoping that your husband will be approved for the Expanded Access Program, too. Every good wish to you!

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@nbcesq What day this week do you start?

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Profile picture for strongone21 @strongone21

@mcoplien try to explore nearby states as that will give you the best possibility.

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@strongone21 How would a nearby state give someone the best possibility?

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@nbcesq What day this week do you start?

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@tomrennie: I get started with an antibiotic and two creams on Wednesday (tomorrow) and the daraxonrasib on Thursday. Hoping that the side effects won't be too nasty....

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Profile picture for nbcesq @nbcesq

@tomrennie: I get started with an antibiotic and two creams on Wednesday (tomorrow) and the daraxonrasib on Thursday. Hoping that the side effects won't be too nasty....

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@nbcesq I hope the side effects aren't too nasty for you either. Please let us know how things go ok?

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@strongone21 How would a nearby state give someone the best possibility?

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@tomrennie in our case, we first got enrolled in the clinical trial through a hospital at a nearby state. Then they transferred our file back to our own hospital, as our hospital did not have the right resources pulled in for us to work on it. So my suggestion is not to wait just for your hospital to keep trying for the trial, but also check with others near you who are willing to try harder.

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Profile picture for strongone21 @strongone21

@tomrennie in our case, we first got enrolled in the clinical trial through a hospital at a nearby state. Then they transferred our file back to our own hospital, as our hospital did not have the right resources pulled in for us to work on it. So my suggestion is not to wait just for your hospital to keep trying for the trial, but also check with others near you who are willing to try harder.

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@strongone21 Thanks for the explanation. Your experience hopefully can help others navigate and speed up their process.

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