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Anyone on Rybrevant (amivantamab-vmjw) for advanced NSC lung cancer?

Posted by bionicbeckyrocks @bionicbeckyrocks, May 31 8:53pm

I have stage 4 NSC lung cancer that has metastasized to my bones. I was on Tagrisso for 13 months but couldn’t tolerate it. My cancer was in remission for a year and then my cancer came back in my hip. I am currently back on Tagrisso but it makes me so sick. I spend most of my days in bed. The headaches, dizziness and brain fog are terrible. I have no appetite. If I do eat small meals when I’m nauseous I vomit. I tested positive for a protein that causes my cancer to grow faster. My oncologist wants to start regular chemo with Rybevant. I’m nervous that I will lose my hair and be even sicker on regular chemo. Has anyone been on this medication? I also wonder if anyone has help with nausea besides Zofran and Reglan.

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mamajite | @mamajite | 1 day ago
In reply to @bionicbeckyrocks "I’m already on a reduced dose of 40mg and have no quality of life. Tagrisso is..." + (show)
Profile picture for bionicbeckyrocks @bionicbeckyrocks

I’m already on a reduced dose of 40mg and have no quality of life. Tagrisso is working at 40mg daily to keep the cancer in remission but I can’t drive, I am dizzy and nauseous all the time. I’m so tired and have no energy. I’m never hungry. I watched the video. He was on Rybrevant at the end of the video when he showed his skin issues? That was terrible. I don’t know if Rybrevant will be worse than Tagrisso.

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@bionicbeckyrocks I'm so sorry the Tagrisso side effects have been disabling for you, even on the reduced dose. Is cannabis legal where you are? That might help with improving your appetite and reducing nausea. And yes - the skin reaction Dr Camidge had was from amivantimab. That said, everyone is different. I would ask a lot of questions about side effects, how long they persist and how they can be prevented/mitigated before starting it. Would a second opinion be helpful?

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mimicmckay | @mimicmckay | 1 day ago
In reply to @bionicbeckyrocks "I’m already on a reduced dose of 40mg and have no quality of life. Tagrisso is..." + (show)
Profile picture for bionicbeckyrocks @bionicbeckyrocks

I’m already on a reduced dose of 40mg and have no quality of life. Tagrisso is working at 40mg daily to keep the cancer in remission but I can’t drive, I am dizzy and nauseous all the time. I’m so tired and have no energy. I’m never hungry. I watched the video. He was on Rybrevant at the end of the video when he showed his skin issues? That was terrible. I don’t know if Rybrevant will be worse than Tagrisso.

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@bionicbeckyrocks there is a new form of Rybrevant called Rybrevant Faspro. It is a 10ml once a week dose for 4 weeks then every other week. Side effects are less. I’m getting it at Stanford in California but it is approved for use. I also met with Palliative Care and they put together a plan for me that took away my nausea. I was 2 pints low so blood helped my very low BP. I would encourage you to reach out and ask for more resources to help your symptoms.
Hang in there. There are some good solutions.

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Lisa, Volunteer Mentor | @lls8000 | 21 hours ago
In reply to @mamajite "@bionicbeckyrocks would your doctor consider a dose reduction of Tagrisso? my oncologists have opposed it, but..." + (show)
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@bionicbeckyrocks would your doctor consider a dose reduction of Tagrisso? my oncologists have opposed it, but I have seen posts from many women saying they felt better and were able to continue on 40mg instead of 80. as far as Rybrevant - if you decide to try it, I would absolutely make sure you receive the corresponding dermatological protocol. there's a lung cancer oncologist in Colorado who got lung cancer himself and shared his experience with it (around minute 18 in the video.) do you have support as you make these tough decisions?

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@mamajite, Dr. Camidge is a hero in the ALK lung cancer community. He’s been supporting us in so many ways for years. A terrific human being! I love that he’s been able to share his story in the recent year. Thanks for sharing this info.

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mamajite | @mamajite | 17 hours ago
In reply to @lls8000 "@mamajite, Dr. Camidge is a hero in the ALK lung cancer community. He’s been supporting us..." + (show)
Profile picture for Lisa, Volunteer Mentor @lls8000

@mamajite, Dr. Camidge is a hero in the ALK lung cancer community. He’s been supporting us in so many ways for years. A terrific human being! I love that he’s been able to share his story in the recent year. Thanks for sharing this info.

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@lls8000 he seems like a wonderful person! I appreciated him being so vulnerable. and for calling out the problems with side effects so many of us experience and showing how that process can be better managed (even while dealing with his own illness).

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