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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 @yogalover "Hi@mamajite, You are so kind for replying me with useful links. I have not started any..." + (show)
Profile picture for yogalover @yogalover

Hi@mamajite,
You are so kind for replying me with useful links. I have not started any treatments yet even though an Oncologist's recommendation is Chemo plus Rybrevant. I am still debating myself is it worthy for me a near 80 years old lady to go through that horrible side effects route or just let it go...? Apologize if there has any confusions of the language. English is not my mother of tongue. I will get in touch with bionicbeckyrocks next.
Thanks again!
Yogalover

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@yogalover you are very welcome! I understand your concerns. I encourage you to have a candid conversation with your oncologist about what all of your options are and what the pros and cons are for each of them. the last I read about Rybrevant was that patients were to start concurrent dermatological support to prevent/combat the difficult side effects. also if you decide to try treatment - you can always change your mind. finding the best balance of quality and quantity of life is something we all are navigating. ❤️

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