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.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

mamajite | @mamajite | Jun 13 11:26pm

In reply to @bionicbeckyrocks "I’m already on a reduced dose of 40mg and have no quality of life. Tagrisso is..." + (show)

@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?

mimicmckay | @mimicmckay | Jun 14 1:37am

In reply to @bionicbeckyrocks "I’m already on a reduced dose of 40mg and have no quality of life. Tagrisso is..." + (show)

@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.

Lisa, Volunteer Mentor | @lls8000 | Jun 14 9:18am

In reply to @mamajite "@bionicbeckyrocks would your doctor consider a dose reduction of Tagrisso? my oncologists have opposed it, but..." + (show)

@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.

mamajite | @mamajite | Jun 14 12:44pm

In reply to @lls8000 "@mamajite, Dr. Camidge is a hero in the ALK lung cancer community. He’s been supporting us..." + (show)

@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).

bionicbeckyrocks | @bionicbeckyrocks | Jun 23 12:53pm

In reply to @lijda "@bionicbeckyrocks I took Tagrisso followed by the chem doublet (carboplatin and pemetrexed) and Rybrevant (amivantamab). The..." + (show)

@lijda

@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.

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@lijda thank you so much. So much to think about.

yogalover | @yogalover | Oct 4 10:28am

Does anyone being treated for EGFR exon 20 by Chemo plus Rybrevant?

mamajite | @mamajite | Oct 4 5:47pm

In reply to @yogalover "Does anyone being treated for EGFR exon 20 by Chemo plus Rybrevant?" + (show)

hi @yogalover welcome to Mayo Connect. you can search for previous posts on specific info (like drug names) using the search box at the top of the page.

here's a recent thread about Rybrevant (amivantamab):
https://connect.mayoclinic.org/discussion/anyone-on-rybrevant-amivantamab-vmjw-for-advanced-nsc-lung-cancer/
tagging other members that might be able to share more about their experiences @lijda @bionicbeckyrocks

Lisa, Volunteer Mentor | @lls8000 | Oct 5 3:51pm

In reply to @yogalover "Does anyone being treated for EGFR exon 20 by Chemo plus Rybrevant?" + (show)

Hi @yogalover, welcome. Have you recently been diagnosed with the type of cancer? Have you started treatment?
I love your screen name. Yoga has been good for my well being.

yogalover | @yogalover | Oct 5 6:00pm

In reply to @lls8000 "Hi @yogalover, welcome. Have you recently been diagnosed with the type of cancer? Have you started..." + (show)

Hi @lls8000, thanks for your reply. I practice Bikram yoga for about 10 years now it has been wonderful for my well being too. Answer to your question. No, I have not started any treatments yet. I join this group wanting to find out how many of us went through the same treatment (for EGFR exon 20) which is Chemo plus Rybrevant had a great result? As I read about horrible side effects during treatment. Is it worthy for me a nearly 80 years old lady to go through that route? English is my second language but I am willing to try to learn from all of you out there prior to accepting an Oncologist's recommendation. Apologize if there has any confusions with my language! Yogalover

yogalover | @yogalover | Oct 5 6:33pm

In reply to @mamajite "hi @yogalover welcome to Mayo Connect. you can search for previous posts on specific info (like..." + (show)

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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