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

@bionicbeckyrocks welcome to Mayo Connect! sorry to hear you're having recurrence and that Tagrisso has been tough on you. is your care team helping you manage the side effects? I would hope they could help you not be bedridden and nauseated. my mom had lymphoma, but acupuncture and cannabis helped her nausea while she was undergoing chemo.

Welcome @bionicbeckyrocks, I love your screen name, and it instills a sense that you want to continue fighting this disease. These targeted therapies can be hard for your body to process. Hopefully they will find one that works for you without all of these side effects. I can't image having to live in a constant state of not feeling well. To be clear, I'm a patient like you (ALK positive), not a clinician. Some oncologists will recommend a dose-reduction when side effects are impacting you to this extent. During your break from Tagrisso, did your issues resolve?
The Rybrevant has been approved for EGFR non-small cell lung cancer just in the past two years, and it was developed to cover the exon 20 insertion mutations. After searching the group posts, I'm not finding other mentions of it, but that doesn't mean that someone won't chime in. Is the rare part of your EGFR exon 20 insertion?
(https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-amivantamab-vmjw-egfr-exon-20-insertion-mutated-non-small-cell-lung-cancer-indications)
Some of the chemo regimens that are given in conjunction with a targeted therapy may be tolerated better than some stronger chemos. Have you had appointments that outlined what to expect with the new treatments? Are you being treated at a cancer center that you trust? Do they have experience in treating other EGFR patients?

@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.

@lijda thank you for sharing your experience navigating these difficult treatment pathways. I can imagine how hard it must be to consider more chemo after having sepsis. hugs! I saw in a previous post you said that you have multifocal lung cancer. I also have 20-30 nodules and have the genetic T790M EGFR mutation. I was wondering if you have something similar?

@mamajite
I have the exon 21 L858R mutation. I poked around a little bit about it versus T790M but the landscape is littered with rabbit holes and I haven't absorbed enough to be articulate. Treatments for both are similar. I too had 20 or so nodules.

I thank you for your question. I also poked around a bit about multifocal; Mayo has done a lot of work with multifocal and some of it sounds encouraging. Maybe I should get treatment again. (I have appointments next week with both my local and my consulting oncologists.)

Which of course brings us back to the quality of life issues. I recently came across the following quote: “Manageable toxicity is not a label — it is an oxymoron.” Good luck to us all!

@lijda the way I understand it, my inherited T790M mutation makes it easy to develop lung cancer, but it still requires an activating co-mutation. Patients like me tend to have a lot of nodules, so I was curious if you might have a similar diagnosis. I have/had 3 known primary tumors, one of which has L858R and it responded well to Tagrisso. Most people acquire the T790M mutation as resistance to first line treatment, so their situation is a bit different than mine. Today is actually my first day of a treatment pause after 2.5 years on Tagrisso - so your quote is apt!

@bionicbeckyrocks, I moved your question into a new discussion about Rybrevant for metastatic non-small cell lung cancer. Did you decide to start the new treatment? How are you doing?