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

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.

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.

@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?

@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.

@bionicbeckyrocks
I took Tagrisso followed by the chem doublet (carboplatin and pemetrexed) and Rybrevant (amivantamab). The problem is that everyone’s reaction to treatment is specific to that person but here goes:

1. I took Tagrisso for 9 months, the first 6 weeks at 80 mg, then dropping to 40 mg because of side effects. Side effects were tolerable on the reduced dose.
Tagrisso did NOT work for me. The first 3-month scan after starting Tagrisso showed progression (ground glass nodules turned solid) and the 9-month scan (still on Tagrisso) showed metastasis to the mediastinal area between the lungs (the first time I had progression outside of the lungs themselves, although still within the chest cavity). I stopped Tagrisso.

2. I started the chemo doublet (carboplatin and pemetrexed) with Rybrevant (amivantamab). I had significant side effects (to me; my doctor kept telling me I looked good) but managed the first four weekly treatments and another treatment 3 weeks after the weekly treatments ended. I learned that my oncologist had been giving me the Rybrevant at a dose intended for patients who weighed 175 pounds or more. I weighed 124 pounds when I started the chemo/Rybrevant treatment but dropped to 103 pounds. The doctor agreed to stop Rybrevant but wanted me to continue the chemo doublet.

3. Before I could decide whether to do additional chemotherapy as recommended, I developed sepsis/septicemia. I spent three weeks in the hospital, followed by twice daily self-administered infusions of antibiotics at home for a month. It took almost six months before I felt like myself.

4. The kicker: the treatment worked. The growth in the mediastinal area resolved and nodules in the lungs either shrunk or resolved. I did not start maintenance treatments (usually pemetrexed and continued amivantamab/Rybrevant, possibly Lazertinib, every three weeks). I was still recovering from the sepsis and I was extremely reluctant to return to any treatment.

5. Six months later, I again have progression, into the mediastinal area again as well as increased size of the growths in the lungs. I am in the same spot you are: do I do treatment? If I do treatment, which treatment?

Datroway (datopotamab deruxtecan), also known as Dato-DXd, has been recommended as my next treatment. Recently, it seems that it is being recommended as the next treatment after failure on Tagrisso (https://egfrchannel.onclive.com/nccn-releases-nsclc-guideline-update-dato-dxd-designated-as-a-preferred-second-line-regimen-in-egfr-mutated-disease/ ), so it is a recommended option to Amnivantamab (Rybrevant). Datopotamab and Amnivantamab have different primary side effects. (Although Datopotamab lists hair loss as a side effect, I have read that it is more thinning than total loss. I did not have hair loss on amnivantamab.)

These decisions are very unsettling. I am not sure my experience can help but I’m too close a match to your situation not to respond, although I do not have metases to the bones, which would add to the urgency of your decision. I might even have made things worse by introducing another option to Rybrevant.