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.

Where is it confirmed that Ben Sasse stopped treatment?

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Profile picture for valerina30 @valerina30

Hi yes they keep telling me it’s a side effect. I’m on eliauis to, they didn’t start swelling till my 3rd week as I’m in my 4th now. I can literally see water on top of my foot swishing around when I shake my foot. Hurts sometimes to walk, I try to elevate as much as I can. My doctor didn’t really say much about the swelling. I’m gonna head to Charleston which is couple hours away to talk to them with someone who’s more knowledgeable about pancreatic cancer. Please keep me posted an I’ll let you know to. Thanks and good luck!

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@valerina30
I didnt think that was a possible side effect. I so dont want him to stop it. Ive heard such great things about this drug. Fri will be week 6 for him. His oncology team thinks his swelling is because of the blood clots, the cancer itself and his lack of nutrition. His protein and albumin is low and that can have something to do with it. He needs to increase protein as much as he can and elevate as much as he can. He is hard headed. I personally think he is very depressed and wont admit it. He barely talks these days. Just wants to sit around and do absolutely nothing but yet he says his pain isnt always that bad. No vomiting/diarrhea/nausea. I just dont know what to do to help him. Im so sad. Good luck at your appt at the other hospital. Let me know what they say to you.

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Hi yes they keep telling me it’s a side effect. I’m on eliauis to, they didn’t start swelling till my 3rd week as I’m in my 4th now. I can literally see water on top of my foot swishing around when I shake my foot. Hurts sometimes to walk, I try to elevate as much as I can. My doctor didn’t really say much about the swelling. I’m gonna head to Charleston which is couple hours away to talk to them with someone who’s more knowledgeable about pancreatic cancer. Please keep me posted an I’ll let you know to. Thanks and good luck!

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Profile picture for valerina30 @valerina30

On my 4th week. I’m getting swelling of the feet now and of course the diarrhea is rentless. Taking stuff for it to. Anyone else get bad feet swelling and what are you doing for it? Thanks

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@valerina30
My husband has horrible swelling in both feet - damn near all the way up to his thighs. However he has blood clots in both legs and is on eliquis. I just assumed the swelling was because of that. I wonder if its because of the daraxonrasib as well. Hmmm.

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On my 4th week. I’m getting swelling of the feet now and of course the diarrhea is rentless. Taking stuff for it to. Anyone else get bad feet swelling and what are you doing for it? Thanks

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Profile picture for aparrish01 @aparrish01

@deemill3r my husband takes an antibiotic 2x a day while on Daraxonrasib that’s how it is prescribed.

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@aparrish01
Getting to start this new drug tomorrow.

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Profile picture for deemill3r @deemill3r

My husband received his pills and all the skin care routine supplies on Friday, October 2. He has not been able to start taking them yet because he was hospitalized that same day with a high fever (infection) and has been on antibiotics. The oncologist say you can’t take both at same time and have to wait at least 10-15 days after completing antibiotics. Anyone else run into this situation? It’s scary waiting as he hasn’t had a chemo treatment (Gemcitibine) in four weeks. Had one infusion treatment of Gemcitabine and infusion #2 and #3 were cancd due to high liver enzymes. Then #4 canc b/c we signed up for pill. Seems like we take two steps fwd and six back. ☹️

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@deemill3r my husband takes an antibiotic 2x a day while on Daraxonrasib that’s how it is prescribed.

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Profile picture for carlos322 @carlos322

Hello! On Daraxonrasib since 9/18/26-11 days. Initial diarrhea has stopped. No skin lesions. Nausea about 1 hour after taking 2 pills. Ativan relieves this. Run out of energy late in the afternoon. Labs due 10/1, CAT scan in 2 months. I am glad I am on the darax!

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@carlos322 starting week 4. Tolerating it well. Minor acne like rash on face. 1 recurrent bleeding point on chest, intermittent nausea and daily pm fatigue. Brief dyspnea on exertion. I am 74. Repeat labs due this week. Cat scan in next 2 weeks or so.

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My husband received his pills and all the skin care routine supplies on Friday, October 2. He has not been able to start taking them yet because he was hospitalized that same day with a high fever (infection) and has been on antibiotics. The oncologist say you can’t take both at same time and have to wait at least 10-15 days after completing antibiotics. Anyone else run into this situation? It’s scary waiting as he hasn’t had a chemo treatment (Gemcitibine) in four weeks. Had one infusion treatment of Gemcitabine and infusion #2 and #3 were cancd due to high liver enzymes. Then #4 canc b/c we signed up for pill. Seems like we take two steps fwd and six back. ☹️

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Sorry to hear your news. Stay positive and remember to take care of the care giver.

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