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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Profile picture for Turkey, Volunteer Mentor @tomrennie

@mcoviello Hi and Welcome to Mayo Connect. Sorry to hear about your mom's journey. We do have some folks here that are taking Daraxonraspid. @mimimmx has fortunately shared some input. Hopefully, you can get some more feedback to learn from others taking it. How is your mom holding up in general?

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@tomrennie thank you! The diarrhea has been the only major side effect so far. If we can get that under control things would be better. The Lomotil and Imodium aren’t as effective so we will check in with her doctor tomorrow.

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Profile picture for mcoviello @mcoviello

My mom started Daraxonraspid three days ago. The only side effect we are struggling with is diarrhea. We are on day three of it and Imodium and Lomotil don’t seem to help. Anyone else having the same side effect? Is there anything that has helped?

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@mcoviello Hi and Welcome to Mayo Connect. Sorry to hear about your mom's journey. We do have some folks here that are taking Daraxonraspid. @mimimmx has fortunately shared some input. Hopefully, you can get some more feedback to learn from others taking it. How is your mom holding up in general?

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Profile picture for mimimmx @mimimmx

I take 2 Imodium when it starts and 1 with each additional bout. Dre that I have to take more than 3. I like the gel caps.

Beware of sun exposure! Daraxonrasib can cause severe sensitivity to the sun. Even small mount can be flying in my experience.

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@mimimmx

Sorry about all the typos. It is rare that I need to take more than 3 Imodium.

Even small amounts of an exposure can be problematic in my experience. Causes severe burning, rashes and sores/scabbing.

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I take 2 Imodium when it starts and 1 with each additional bout. Dre that I have to take more than 3. I like the gel caps.

Beware of sun exposure! Daraxonrasib can cause severe sensitivity to the sun. Even small mount can be flying in my experience.

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My mom started Daraxonraspid three days ago. The only side effect we are struggling with is diarrhea. We are on day three of it and Imodium and Lomotil don’t seem to help. Anyone else having the same side effect? Is there anything that has helped?

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Profile picture for strongone21 @strongone21

@joyful23 almost a full month. The drug company controls who they can give it to, as there are many requests from hospitals.

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@strongone21 Thanks.

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Profile picture for joyful23 @joyful23

@nbcesq how long did it take you to get the drug after applying for it?
Wishing you all the best.

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@joyful23 almost a full month. The drug company controls who they can give it to, as there are many requests from hospitals.

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Profile picture for nbcesq @nbcesq

@tomrennie: I get started with an antibiotic and two creams on Wednesday (tomorrow) and the daraxonrasib on Thursday. Hoping that the side effects won't be too nasty....

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@nbcesq how long did it take you to get the drug after applying for it?
Wishing you all the best.

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Profile picture for strongone21 @strongone21

@tomrennie in our case, we first got enrolled in the clinical trial through a hospital at a nearby state. Then they transferred our file back to our own hospital, as our hospital did not have the right resources pulled in for us to work on it. So my suggestion is not to wait just for your hospital to keep trying for the trial, but also check with others near you who are willing to try harder.

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@strongone21 Thanks for the explanation. Your experience hopefully can help others navigate and speed up their process.

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Profile picture for Turkey, Volunteer Mentor @tomrennie

@strongone21 How would a nearby state give someone the best possibility?

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@tomrennie in our case, we first got enrolled in the clinical trial through a hospital at a nearby state. Then they transferred our file back to our own hospital, as our hospital did not have the right resources pulled in for us to work on it. So my suggestion is not to wait just for your hospital to keep trying for the trial, but also check with others near you who are willing to try harder.

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