Anyone have HER2 mutation and lung cancer? What treatment?

@sboes, welcome to the Lung Cancer group. I believe @burrkay's wife has the HER2 mutation. He may be able to share her treatment experiences with you.

As you probably already know, HER2 mutations tend to be more common in adenocarcinoma non-small cell lung cancer patients with little to no smoking history. Only about 2% of lung cancer patients have HER2 mutations.

What led your team to do genetic testing to find out that you had the HER2 mutation? Do you know what stage your cancer is?

Thank you. I am stage IV and fit your HER2 patient description. My initial regimen started in 09/2020 and had become resistant so we expanded my genetic testing to find mutations.

Hello @sboes...thank you! and Thanks Colleen!
Yes, Colleen is correct....my wife was diagnosed with Stage 4 Non Small Cell Lung Cancer (Multifocal Lung Adenocarcinoma HER-2/neu Amplified) in 2016 after her treatments were proven to not be working. She had undergone a bi-lobectemy of her right lung in May, 2015 followed by adjuvant cisplatin based chemotherapy.
CASE HISTORY FOLLOWS:
The amplification of the Her-2 mutation was determined (October, 2016) by a genetic study of a lung biopsy from Foundation One in Boston.
Her oncologist at the time, then suggested a trial called "My Pathways". We signed her up and the drugs were given to her via infusions every 3 weeks, beginning in December 2016. The drugs seemed to hold her cancer at bay until March of this year (4+ years), at which time she was hospitalized with a blood clot in the lung and double pneumonia.
A followup in April with Mayo-Rochester after her release from the hospital resulted in us putting her on "Chemo Holiday" until August 31...at which time scans showed the cancer had now grown...so, in early October of this year she was given "systemic chemotherapy" which included a combination of carboplatin, pemetrexed (Alimta) and ipilimumab (YERVOY) plus nivolumab (Opdivo) similar to the check mate 9LA trial.
She was to have 2 cycles of carboplatin, pemetrexed with immunotherapy followed by maintenance immunotherapy only (ipilmumab, plus nivolumab). That therapy proved to not be working after the first 2 cycles.
Mayo now suggests we consider the possibility of being treated with trastuzumab deruxtecan (6.4 mg per kilogram of body weight) as per recent NEJM manuscript (September 18, 2021) that indicated an objective response seen in the 55% of patients with good tolerability.
We are now waiting for our local oncologist to discuss this proposal with Mayo, as we await approval of this phase 2 trial. The concern is that my wife had previously been on the My Pathways trial, which incorporated Herceptin and reintroducing that drug might cause toxicity in the lungs, much like what she experienced in March.
She has been on full time 02 since the latest hospitalization in October...
We have been told by our oncologists that this is the only viable alternative...So, we wait, and prayerfully hope for the best.
We are truly grateful for the additional time we have had together resulting from the latest advancements in medicine. We pray that the research will soon find a cure for this awful disease!

Thank you for your quick reply! I am sorry to hear that your wif'e's treatment in Pathway began to fail her. It's encouraging though that it was effective for 4 years. Praying that she can get into the trial and be able to come off her O2. My insurance (Medicare) just approved me for Enhertu (trastuzumab deruxtecan). It is the same drug I believe they are using in the trial you mentioned. If I didn't get approval, I was going to try a trial called Masterkey but not with trastuzumab.

Does anyone have NSCLC, adenocarcinoma with a KRAS G12D mutation?

Thank you for your reply…interesting that you were looking into Masterkey without tratuzumab…
Can u share where u are being treated for ur cancer?
I am not familiar with that trial.
My wife has now been approved for the trial recommended…however we remain concerned about the potential toxicity caused by the Herceptin…

Congrats on the trial approval. I hope it goes well for her. I am being treated at MD Anderson in Jacksonville, FL.

Thanks! I looked into the Masterkey 01 trial from Black Diamond…looks promising, although I get confused with all of these therapies, for sure!
Looks as though this is an oral therapy…called BDTX-189(?)
One thing I noticed…it is “irreversible”, and not sure what implications that might have, should it not work(?)
My wife says we should stay focused on that which our oncologists recommend. However, I think it’s prudent to ask questions, when it comes to these treatments. I suspect the doctors get tired of me questioning-hah!
Good luck with your quest for the right treatment.