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 mcharlesfrancis @mcharlesfrancis

I have pancreatic cancer myself, but I have never taken daraxonrasib. My initial treatment was the triplet of gemcitabine, Abraxane and cisplatin for 18 weeks—two weeks on and one week off—followed by 33 days of radiation.

That's why I'm particularly interested in hearing firsthand experiences from people who are actually taking daraxonrasib. These new KRAS-targeted drugs are giving a lot of pancreatic cancer patients hope.

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i have never heard of radiation as a treatment for pancreatic cancer? Hubby took the chemo, but was recommended because of his age (80) to do just an every other week treatment, as studies have shown this modified schedule keeps quality of life up in seniors while making very little change to life span. Of course there is no cure for pancreatic cancer, you take the chemo as long as you can stand it or until your quality of life deminishes. My hubby has had 33 treatment. But never was it ever suggested he have "radiation" as well, perhaps you are younger or it has spread to where radiation makes sense. Anyway, my Hubby is now on the "pill" and has gotten off his chemo . It has only been 3 weeks so we have no data to see any change, other than quality of life, and frankly, his fatigue is worse on the pill, so far all other symptoms being minimal. He has been lucky, but is the "pill" right for him? the next CT will iprobably give us some info on that, but I am beginning to believe that given our good experience on chemo, holding his cancer off to a very slow but steady spread, to be a good thing, and the pill may not be as good for him. Each patient is different. Good luck with your decision, but please drop a line to me regarding the radiation you have undergone. I am very interested in that avenue that our doctor has continually told us is not available. write thanks

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Check this clinical trial out
https://clinicaltrials.gov/study/NCT07491445
This is a global, randomized, open-label, Phase 3 study designed to evaluate whether treatment with daraxonrasib monotherapy or daraxonrasib plus gemcitabine and nab-paclitaxel will improve progression-free survival and/or overall survival compared with standard gemcitabine and nab-paclitaxel when given as first-line treatment in patients with metastatic pancreatic adenocarcinoma.

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It will be interesting to see the results of the daraxonrasib and chemo combination.

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Profile picture for witchypooy @witchypooy

it is my understanding that the RAS pill darazonrasib is only currently being given to stage 4 patients who have undergone the standard protocol of treatments and they are no longer working to hold the cancer at bay Under the Early Release program, my husband has been on the pill for 7 days out of Pittsburgh UPMC.
My only question is how can they possibly tell except under general averaging, if the pill actually extends anyone's life beyond what they would have experienced under chemo or even under no treatment. Each patient is qnique. My husband is 22 months out from his original diagnosis, and 33 chemo sessions at this time before the start of the pill. He is already well beyond the "average life", so how are we or anyone suppose to declare their life expectancy has improved? Quality of life can be assessded by the patient and families but lenght of life extended cannot be proven. Therefore if the pill reduces your quality of life, then it is probably not worth it to you. Doctors doing the trials on this pill have only been able to "average" life length and patients like my husband may skew the stats for all involved.

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@witchypooy

Rev Med completed a phase 3 trial that used statistically valid test and control groups. The test group received Daraxonrasib. The control group received conventional standard of care, chemotherapy. They than monitored the two groups to see how they did. At the time they reported out their findings, the test group Overall Survival was 13 months vs. 6 months for the control group.

I agree everyone is different. I was diagnosed with PDAC in April 2023 with surgery and chemo. Recurrence in August 2024. I went on a Rev Med phase 1/2 clinical trial of dual therapy with Daraxonrasib and Zoldonrasib. I had a “complete response” within a couple months meaning the tumors in my liver and abdomen are no longer present with a CT scan. I am coming to my two year mark on the trial this October. Side effects have been real and annoying. I have had anemia/ low iron treated with infusions twice. I have a scalp rash and a sore on my lip that won’t heal. I also have had mouth sores and diarrhea that I no longer experience. I am a huge advocate for these drugs. They have clearly extended my life with a good quality of life. I recommend your husband seriously consider using Daraxonrasib if he qualifies. Hope this helps.

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Profile picture for witchypooy @witchypooy

i have never heard of radiation as a treatment for pancreatic cancer? Hubby took the chemo, but was recommended because of his age (80) to do just an every other week treatment, as studies have shown this modified schedule keeps quality of life up in seniors while making very little change to life span. Of course there is no cure for pancreatic cancer, you take the chemo as long as you can stand it or until your quality of life deminishes. My hubby has had 33 treatment. But never was it ever suggested he have "radiation" as well, perhaps you are younger or it has spread to where radiation makes sense. Anyway, my Hubby is now on the "pill" and has gotten off his chemo . It has only been 3 weeks so we have no data to see any change, other than quality of life, and frankly, his fatigue is worse on the pill, so far all other symptoms being minimal. He has been lucky, but is the "pill" right for him? the next CT will iprobably give us some info on that, but I am beginning to believe that given our good experience on chemo, holding his cancer off to a very slow but steady spread, to be a good thing, and the pill may not be as good for him. Each patient is different. Good luck with your decision, but please drop a line to me regarding the radiation you have undergone. I am very interested in that avenue that our doctor has continually told us is not available. write thanks

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@witchypooy Thanks for asking about the radiation. Radiation can be used in pancreatic cancer, although it isn't appropriate for every patient or every situation.

In my case, my pancreatic tumor was considered unresectable. I first received 18 weeks of chemotherapy with gemcitabine, Abraxane and cisplatin, two weeks on and one week off. After completing that chemotherapy, I underwent 33 radiation treatments, Monday through Friday with weekends off.

The purpose of the radiation was to treat the pancreatic tumor locally after chemotherapy. It was part of the treatment plan recommended specifically for my situation, not something that every pancreatic cancer patient necessarily needs.

I agree completely that every patient is different. Age, overall health, location and extent of the cancer, response to chemotherapy and whether the disease has spread all influence whether radiation makes sense.

I am very interested to hear how your husband does on the new pill, especially after 33 chemotherapy treatments. Three weeks is certainly early, and hopefully the next CT will give you a much better idea of whether it is controlling his cancer. I hope the fatigue improves as his body adjusts.

Thanks again for asking about my radiation experience, and I wish your husband the very best with his treatment.

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Profile picture for mimimmx @mimimmx

@witchypooy

Rev Med completed a phase 3 trial that used statistically valid test and control groups. The test group received Daraxonrasib. The control group received conventional standard of care, chemotherapy. They than monitored the two groups to see how they did. At the time they reported out their findings, the test group Overall Survival was 13 months vs. 6 months for the control group.

I agree everyone is different. I was diagnosed with PDAC in April 2023 with surgery and chemo. Recurrence in August 2024. I went on a Rev Med phase 1/2 clinical trial of dual therapy with Daraxonrasib and Zoldonrasib. I had a “complete response” within a couple months meaning the tumors in my liver and abdomen are no longer present with a CT scan. I am coming to my two year mark on the trial this October. Side effects have been real and annoying. I have had anemia/ low iron treated with infusions twice. I have a scalp rash and a sore on my lip that won’t heal. I also have had mouth sores and diarrhea that I no longer experience. I am a huge advocate for these drugs. They have clearly extended my life with a good quality of life. I recommend your husband seriously consider using Daraxonrasib if he qualifies. Hope this helps.

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@mimimmx , have you tried the simplest? ICE, applied to the sore, held there as long as you can stand it, 3 times a day, sores in the mouth ice in the mouth for as long as you can stand it....there is an over the counter "canker sore" med you can try...finally over the counter PRILOSEC one each night, releaves reflux at night while sleeping...most folks don't even know they have reflux but they do..the "stuff" in your mouth germs, bacteria etc will make the sores worse...one prilosec each night (or other reflux med your doctor recommends) is a "proactive" approach to the sores. From your comment I am adding IRON and magnesium to my hubby's daily routine for the fatigue. God bless you..
Marlene

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My wife is on day 16 of daraxonrasib through the Revolution Medicine's early access program. She is receiving treatment including the supply of pills through Mass General in Boston. No more chemotherapy, which is a good thing. So far the major side effects are persistent diarrhea that is moderated somewhat by medication and fatigue. We won't know definitively if the pill is reducing her tumors until she has a scan in early October.

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Profile picture for mimimmx @mimimmx

@witchypooy

Rev Med completed a phase 3 trial that used statistically valid test and control groups. The test group received Daraxonrasib. The control group received conventional standard of care, chemotherapy. They than monitored the two groups to see how they did. At the time they reported out their findings, the test group Overall Survival was 13 months vs. 6 months for the control group.

I agree everyone is different. I was diagnosed with PDAC in April 2023 with surgery and chemo. Recurrence in August 2024. I went on a Rev Med phase 1/2 clinical trial of dual therapy with Daraxonrasib and Zoldonrasib. I had a “complete response” within a couple months meaning the tumors in my liver and abdomen are no longer present with a CT scan. I am coming to my two year mark on the trial this October. Side effects have been real and annoying. I have had anemia/ low iron treated with infusions twice. I have a scalp rash and a sore on my lip that won’t heal. I also have had mouth sores and diarrhea that I no longer experience. I am a huge advocate for these drugs. They have clearly extended my life with a good quality of life. I recommend your husband seriously consider using Daraxonrasib if he qualifies. Hope this helps.

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@mimimmx how long do you stay on these pills?

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Profile picture for valerina30 @valerina30

@mimimmx how long do you stay on these pills?

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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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Profile picture for mimimmx @mimimmx

@witchypooy

Rev Med completed a phase 3 trial that used statistically valid test and control groups. The test group received Daraxonrasib. The control group received conventional standard of care, chemotherapy. They than monitored the two groups to see how they did. At the time they reported out their findings, the test group Overall Survival was 13 months vs. 6 months for the control group.

I agree everyone is different. I was diagnosed with PDAC in April 2023 with surgery and chemo. Recurrence in August 2024. I went on a Rev Med phase 1/2 clinical trial of dual therapy with Daraxonrasib and Zoldonrasib. I had a “complete response” within a couple months meaning the tumors in my liver and abdomen are no longer present with a CT scan. I am coming to my two year mark on the trial this October. Side effects have been real and annoying. I have had anemia/ low iron treated with infusions twice. I have a scalp rash and a sore on my lip that won’t heal. I also have had mouth sores and diarrhea that I no longer experience. I am a huge advocate for these drugs. They have clearly extended my life with a good quality of life. I recommend your husband seriously consider using Daraxonrasib if he qualifies. Hope this helps.

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@mimimmx sons Did he have total Pancreatectomy?

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