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 ljojimo @ljojimo

@amiller7x7 OK, tried one more time with reduced file size..... nope that didn't work either. If you really need these photos, you could post your email address and I can email them to you outside of the Mayo list.

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@ljojimo Just sent you a private message with email address via this message forum. Let me know if that works as I have not used it before.

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Profile picture for ljojimo @ljojimo

@amiller7x7 I have attached photos of the measured width 1/4in, length 3/4in, and bottle label. These are 100mg pills, my wife takes three a day at one time (after breakfast). I am in a support group with a woman whose husband dropped from 300mg to 150mg because of terrible mouth sores. This implies to me that RevMed produces a 50mg size pill. Maybe you could inquire about that. Best of luck.

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@ljojimo
Even just with the pill dimensions, it looks like the pills are about the same size as her Creon capsules. This gives us some insights and we have found using Gloup, an aid for swallowing, that she can get a couple of capsules down at one time. Hopefully this means her swallowing ability won't have to determine her treatment for the cancer!

I include a picture of the Gloup which we just found in searching for swallowing aids. Bought it on Amazon.

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Profile picture for valerina30 @valerina30

@mimimmx oh really ok thanks. Do the nasty side effects stay with you the whole time? Hoping to start this pill soon.

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@valerina30 I asked that question of my wife's NP. She said unfortunately, yes, although they may diminish. They can occur at any time during the duration of the treatment and will remain an issue.

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Profile picture for ljojimo @ljojimo

@valerina30 I asked that question of my wife's NP. She said unfortunately, yes, although they may diminish. They can occur at any time during the duration of the treatment and will remain an issue.

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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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Profile picture for witchypooy @witchypooy

Hubby is on day 9 of daraxonrasib for his stage 4 pancreatic cancer/ lung matast. First 2 days of pills had nausia and diarrhea but they were easily controlled and for the past 6 days he has had no side effects at all no nausia or diarrhea. Only the face rash that they say 90% of paitents get in some degree. he is now on a topical cordizone cream and and antibiotic for that. So far so good, but of course a CT is not due for another 2 months so knowing if the pill is effective will be some time to come. But I have to say we still go to the casino twice a week and visit our 4 grandchildren and play cards, so quality of life has been good. He is 80 by the way, and still is able to drive and does not need a walker.
As to history, diagnosed at 80 yrs old, in Oct 2024, with stage 4 pan/lung involvement, , and been on Chemo of Gemc and Paclitaxel, since March, 2025 with a modified schedule of just every other week. He has had 30 chemo treatments, and outside of fatigue he has had NO side effects. He did have a stent inserted in his bile duct called ERCP to avoid pain and jaundace way back at diagnosis in Oct 2024, and I believe that early proceedure has cause him to live much better than expected. No Whipple as you cannot have a Whipple if you are stage 4. CT scans show slsow or no advancement, but his CA 19 has gone from 7000 to about 15000 in that time, so we know that the cancer is slowed but still on the move.

Now Daraxonrasib, made available on Early Release and OK'b by FDA on May 1, 2026 check google and Revolution Medicine Inc's web site for the press releases. I researched and saw this and asked our Oncologist immediately if my Husband qualified. We set about to fill out all the necessary paperwork for approval from Revolution Medicines, Inc. They have a strict protocol for who will get the pill on Early Release...You have to be stage 4, you have to have tried the normal treatment protocols such as chemo, and you have to at this time after months of treatment, be losing the battle. you must also be in fairly good health otherwise with restrictions on your need for other meds like diabetes, as the "pill" won't mix with certains other meds. They don't take folks close to death, as "the pill" only increases your life expectancy by 50%, It does not cure you. Hospice patients don't qualify. Revolution Medicine INC takes your app and evaluates it, then lets your doctor know if you qualify. My husband's application took 6 weeks to be processed, but he did finally get the OK. He stayed on his chemo treatments right up to the day he took his first pill, then stopped the chemo. There is no way of knowing what my husbands life expectancy is since he was doing so well and defying the odds already, but the Doctor gave him 3 to 5 years. And since he had no side effects from chemo, we can't really expect "quality" of life to improve when we are already at the top of the scale so to speak. But we decided we would try the pill for 3 mos and see a CT scan. We can always go back on our chemo regemend if we want. We are in Pittsburgh so lucky to have one of the Country's leading Cancer centers here near by, Hillman Cancer Center out of University of Pittsburgh, But frankly, most of what my husband has experienced has come from MY own research and question to the doc, about chemo schedules, stents, and the "pill". You must stay active and on to of things. And most important of all ATTITUDE......you must keep a good attitude about what life you have left and make the best of it, and not dwell on the future, take day by day and have FUN.

It is my understand Daraxonrasib will be fully OK'd by the FDA by Jan 2027 when at that time, everyone will qualify for it depending on your doctors recommendation. But now, on Revolution Medicine Inc can say who gets it based on their protocol. Chemo is still considered the first line of defense, so if you haven't taken chemo, then forget thepill, at least until it is fullly approved in 1/2027. The pills go to your clinic or hospital where your doctor works with your name on them alone, which is why it takes so long. They are NOT going to outside pharmacies at this time. So if you think you qualify, get your doctor to submit your name, and then begin the waiting game, and good luc.

Please visit Revolution Medicine Inc web site and look under early release program to see who qualifies and how to go about it..I can't put their web site in here, the forum won't let me.
Love to all,
Marlene

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@witchypooy Thank you for sharing this Marlene. My friend is 71 years old with a story much like your husband's , now on day 15 of Daraxonrasib. He is experiencing intermittent diarrhea, and fatigue. Will share your husband's clinical course with him

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My husband Mike was approved for the pill on 8/6 and it was order on 8/7. But he has been in the hospital since around 8/11 due to aspiration pneumonia. Could not keep anything down. Turned out the stomach tumor was partially blocking the entrance to the stomach. They put in a stent a week ago. But I am afraid cancer won before we could get the pill. He is on comfort care now. 69 years old. Will likely pass away today. Cancer sucks.

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Profile picture for mcoplien @mcoplien

@strongone21 We were called Friday by our cancer center's Research Team. First step is to sign the consent. Will do that on Monday. Hoping to start Daraxonrasib next week!!!!

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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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Profile picture for mcoplien @mcoplien

@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 So sorry to hear what you are going through, sending you and your family warm hugs!

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Profile picture for mcoplien @mcoplien

@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 sending you and your family peace and strength

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Profile picture for mcoplien @mcoplien

@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 Sorry to hear that about your husband. Giving him and your family hugs.

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