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?

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

Profile picture for marienewland @mnewland99

@scullen53
My dr applied. I'm with UCI, not Mayo. She told me the process can take about 2 months.

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@mnewland99 Our doctor said the same thing.

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Profile picture for scullen53 @scullen53

My brother has stage 4 pancreatic cancer, he has asked his MD about Daraxonrasib after it was granted expanded access by the FDA. He was told it still had to be approved by Mayo?! That doesn't sound correct to me. My understanding was that the oncologist needs to apply to Revolution Medicines to obtain it. Does anyone understand what the process is? Thanks

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@scullen53
My dr applied. I'm with UCI, not Mayo. She told me the process can take about 2 months.

REPLY
Profile picture for scullen53 @scullen53

My brother has stage 4 pancreatic cancer, he has asked his MD about Daraxonrasib after it was granted expanded access by the FDA. He was told it still had to be approved by Mayo?! That doesn't sound correct to me. My understanding was that the oncologist needs to apply to Revolution Medicines to obtain it. Does anyone understand what the process is? Thanks

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@scullen53 Hi and welcome to Mayo Connect. Here is the process from the manufacturer's website. So you are finding it to be different?
https://www.revmed.com/expanded-access-policy/

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My brother has stage 4 pancreatic cancer, he has asked his MD about Daraxonrasib after it was granted expanded access by the FDA. He was told it still had to be approved by Mayo?! That doesn't sound correct to me. My understanding was that the oncologist needs to apply to Revolution Medicines to obtain it. Does anyone understand what the process is? Thanks

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Profile picture for gsf @gsf

@strongone21 Thank you for that information and good to hear you believe the side effects are manageable. I wrote "if her cancer metastasizes" since I think, from what I've been reading, that this is required for both the trials and for the FDA limited release of Daraxonasrab.

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@gsf Sorry I misunderstood. I see that metastasis is a requirement for Daraxonrasib EAP access.

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Profile picture for strongone21 @strongone21

@gsf I agree with @gamaryanne. Waiting till it metastasizes might make it harder. Side effects are manageable and doctors are good about proactively treating them. At this point, getting in a trial with this drug is a lot harder than the side effects itself, so if she can get in it is definitely worth it.

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@strongone21 Thank you for that information and good to hear you believe the side effects are manageable. I wrote "if her cancer metastasizes" since I think, from what I've been reading, that this is required for both the trials and for the FDA limited release of Daraxonasrab.

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Profile picture for gsf @gsf

@gamaryanne @gamaryanne Have the people you know in the trial for this drug had good results? Have they seen their tumors shrink? My wife has the KRAS G12D mutation so would be a good candidate if her cancer metastasizes, but she is a little afraid of the side effects---not just the rash but other ones as well. Thank you in advance for a reply. Your posts have been helpful.

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@gsf I agree with @gamaryanne. Waiting till it metastasizes might make it harder. Side effects are manageable and doctors are good about proactively treating them. At this point, getting in a trial with this drug is a lot harder than the side effects itself, so if she can get in it is definitely worth it.

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Yes, definitely. Shrinkage and maintenance preventing future growth has been seen in many people. I also had shrinkage and was not on the current approved dosage (I was in a phase 1 clinical trial). Two things about the side effects: 1)because of clinical trials, doctors have topicals and prescriptive drugs to offer to control skin side effects upfront
2) not everyone experiences the side effects dramatically. Dosages may be managed and escalated as patients adjust to it.

Ben Sasse is not a typical example of the effects of this drug. He is most likely taking the max dose along with chemo, probably fulfurinox. She should not be scared of it based on his expose.

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Profile picture for gamaryanne @gamaryanne

Please know that while the skin issues are annoying, the company has found several different topical creams and prescription antibiotics that can head the worst of this off. Ask for these upfront. Also. This drug is not FDA approved so they have to supply it directly. They are not a large scale manufacturer so this may take a little time to disperse.
I know many people that have been in the trial for the drugs over 2 years! They have found ways to deal with the skin so don’t let that create too much anxiety !

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@gamaryanne @gamaryanne Have the people you know in the trial for this drug had good results? Have they seen their tumors shrink? My wife has the KRAS G12D mutation so would be a good candidate if her cancer metastasizes, but she is a little afraid of the side effects---not just the rash but other ones as well. Thank you in advance for a reply. Your posts have been helpful.

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Profile picture for alanbeavfan @alanbeavfan

Is this drug specific to the KRAS mutation? Is it being also tested on non-KRAS patients?

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@alanbeavfan this is only for KRAS mutations from what I know.

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