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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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valerina30 | @valerina30 | Aug 26 8:40am
In reply to @mimimmx "@valerina30 Until my cancer starts to progress. In the clinical trial I am in, if you..." + (show)
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@valerina30
Until my cancer starts to progress. In the clinical trial I am in, if you have 20% growth if your tumors, you are required to discontinue the trial and medicines. I am hopeful I will be in the drugs for a long time into the future. I am aware of trial participants who have been in Daraxonrasib for well over three years.

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@mimimmx thxs an good luck!

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joeseah | @joeseah | Aug 26 12:40pm
In reply to @mcoplien "@mcoplien Mike was approved for compassionate care on 8/6 ... but it did not come fast..." + (show)
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@mcoplien Mike was approved for compassionate care on 8/6 ... but it did not come fast enough. He is now in end of life care and will likely pass away today 🙁

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@mcoplien My thoughts and prayers

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witchypooy | @witchypooy | Aug 26 7:44pm

FDA approved Daraxonrasib today for anyone, anywhere. No more qualifying. Just get your doctor to prescribe it. FDA was 5 months ahead of schedule. Read the WSJ or the NYT story today to see why they went so fast.

There are new trials now exploring combining the "pill" with chemo at various levels to see what the best combo should be. Your doctor will have to on top of it to get it right for you.

No more waiting, no more lists, just get your doctor going on it.
By the way, it is estimated it might cost $1000/ month for the pills now that it is approved. The fed gov will have to step in and provide some relief to medicare patients.

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BeInTheMoment | @mcoviello | Aug 26 8:07pm
In reply to @tomrennie "@ljojimo Others have had some success minimizing side effects by taking a reduced dosage or by..." + (show)
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@ljojimo Others have had some success minimizing side effects by taking a reduced dosage or by taking a short break in treatment. Did the NP offer those suggestions?

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@tomrennie yes my mom had to take a two week break to bring her lab levels back up. She’s now on a reduced dose of 200mg and it’s made all the difference for her. Breaks and a reduced dose seem very common.

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Turkey, Volunteer Mentor | @tomrennie | Aug 27 10:11am
In reply to @mcoviello "@tomrennie yes my mom had to take a two week break to bring her lab levels..." + (show)
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@tomrennie yes my mom had to take a two week break to bring her lab levels back up. She’s now on a reduced dose of 200mg and it’s made all the difference for her. Breaks and a reduced dose seem very common.

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@mcoviello That's great. I am glad that the dose can be altered as needed to help manage side effects. Please keep us posted on her progress. Thanks.

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aparrish01 | @aparrish01 | Sep 6 2:36pm
In reply to @gamaryanne "Please know that while the skin issues are annoying, the company has found several different topical..." + (show)
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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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What is the name of the Company that has found several different topical creams? My husband had tried several prescriptions and they ate a temporary relief.

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aparrish01 | @aparrish01 | Sep 6 2:41pm
In reply to @mcoviello "@tomrennie yes my mom had to take a two week break to bring her lab levels..." + (show)
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@tomrennie yes my mom had to take a two week break to bring her lab levels back up. She’s now on a reduced dose of 200mg and it’s made all the difference for her. Breaks and a reduced dose seem very common.

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Did she experience the rash and if so what did she use to manage it? My husband is on 300 mg’s. Just started July 29th 2026.

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BeInTheMoment | @mcoviello | Sep 6 3:44pm

Yes, she experienced the rash. She was on Doxycycline by pill, hypochlorous spray on her face as well as a steroid cream on her face and trunk. She had to pause the medicine and then drop to a lower dose due to her labs. I’ve heard that working with a dermatologist is helpful in treating the rash. We didn’t get that far since the rash went away with the lower dose. I’ve also heard from others that the rash seems to come and go. I hope your husband’s is mild and manageable.

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aparrish01 | @aparrish01 | Sep 7 8:05am
In reply to @mcoviello "Yes, she experienced the rash. She was on Doxycycline by pill, hypochlorous spray on her face..." + (show)
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Yes, she experienced the rash. She was on Doxycycline by pill, hypochlorous spray on her face as well as a steroid cream on her face and trunk. She had to pause the medicine and then drop to a lower dose due to her labs. I’ve heard that working with a dermatologist is helpful in treating the rash. We didn’t get that far since the rash went away with the lower dose. I’ve also heard from others that the rash seems to come and go. I hope your husband’s is mild and manageable.

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Yes he has seen a Dermatologist and is Leary about reducing the dose.

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