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@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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Replies to "@bionicbeckyrocks I took Tagrisso followed by the chem doublet (carboplatin and pemetrexed) and Rybrevant (amivantamab). The..."

@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?