HER2 non small cell adenocarcinoma stage 4 lines of treatment

Posted by mil63 @mil63, 1 day ago

Hello this is all very new to us. Husband age 63 and excellent health diagnosed June 2025.
He has minimal symptoms but he is stage 4, Lung non small cell Adenocarcinoma , positive ERBB2 ( HER 2) , PDL 1%, Mets to liver and bone. After 4 cycles of carboplantin, pemetrex plus pembro to be followed by maintenance pemetrex and pembro.
He will have PetScan next week ( 4 cycles have been completed) .

A preliminary CT ( after 2 cycles) showed 20% tumor shrinkage and no new tumors. It seems like rather than continue more cycles of maintenance why not right away start with the meds that are being found very effective for HER 2 ?

Is there documentation showing that the first line is more effective for specifically HER 2 in lung adenocarcinoma?

Thank you.

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

ps

The second line is
Fam- Trastuzumab deruxtecan-nxki for HER 2 over expression in non small cell lung adenocarcinoma.

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hi @mil63 - I would ask your husband's oncologist about Zongertinib. It received FDA approval in August as a second line treatment for HER2 mutated non squamous, non small cell lung cancer. And in the clinical trial, it was more effective in patients that had NOT previously received a second line HER2 antibody drug conjugate. If you aren't getting the answers you need from your team, it's always worth getting a second opinion, especially from a NIH Cancer Center.
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-zongertinib-non-squamous-nsclc-her2-tkd-activating-mutations

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@mil63, A new diagnosis like your husband's is often overwhelming. There is so much to learn, and many decisions to make. That's great that his tumors are responding to treatment!
There may be research that supports the oncologist's plan, but maybe the choice is squishier than that. It's certainly worth a conversation. Some stage IV cancer patients can go directly to a targeted therapy as fist line. I was one of those cases. I'm still on my first line inhibitor (for ALK positive NSCLC). Have you asked his oncologist what reason they have for continuing with the current treatment vs an inhibitor?

@sboes , I believe you are HER2, and were on enhertu at one point. What treatments are you doing now, if any?

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Thank you very much for this information.

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Profile picture for Lisa, Volunteer Mentor @lls8000

@mil63, A new diagnosis like your husband's is often overwhelming. There is so much to learn, and many decisions to make. That's great that his tumors are responding to treatment!
There may be research that supports the oncologist's plan, but maybe the choice is squishier than that. It's certainly worth a conversation. Some stage IV cancer patients can go directly to a targeted therapy as fist line. I was one of those cases. I'm still on my first line inhibitor (for ALK positive NSCLC). Have you asked his oncologist what reason they have for continuing with the current treatment vs an inhibitor?

@sboes , I believe you are HER2, and were on enhertu at one point. What treatments are you doing now, if any?

Jump to this post

@lls8000 thank you . We had a second opinion at Mayo when we started and they concurred 💯 with the first line treatment I mentioned in our local hospital .
It’s chemo carboplantin, alimta and additionally immunotherapy- keytruda.
The second line explained to us is :
Fam- Trastuzumab deruxtecan-nxki for HER 2 over expression in non small cell lung adenocarcinoma. (if we find first line not working)
It seems to be working at mid cycles but it feels like , are we wasting time? Can it be more successful do other ?
Obviously we are still getting educated and it is overwhelming. It’s a scary feeling to think we have to negotiate .

REPLY
Profile picture for Lisa, Volunteer Mentor @lls8000

@mil63, A new diagnosis like your husband's is often overwhelming. There is so much to learn, and many decisions to make. That's great that his tumors are responding to treatment!
There may be research that supports the oncologist's plan, but maybe the choice is squishier than that. It's certainly worth a conversation. Some stage IV cancer patients can go directly to a targeted therapy as fist line. I was one of those cases. I'm still on my first line inhibitor (for ALK positive NSCLC). Have you asked his oncologist what reason they have for continuing with the current treatment vs an inhibitor?

@sboes , I believe you are HER2, and were on enhertu at one point. What treatments are you doing now, if any?

Jump to this post

@lls8000 . Hello, what types of treatments did u receive that YOU are alive 5 years later?? chemo? radiation?
I'm waiting for final diagnosis for stage 4 lung cancer. NO word from my doctor yet, if I need biopsies of lung and lymph nodes. Also final results of thyroid scan. It metastized to my skin of right temple. That is why we found I had cancer w/out any signs and symptoms at all.
Thanks so much. I am scared about what I have read about immunotherapy meds!! very scary!

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My husband has only had his 4 cycles every 3 weeks . He was just diagnosed This June. I think my sentence is a little confusing.
He has done really well with chemo including the immunosuppressant. We were told the possible side effects and ways to reduce them and be more comfortable. For example- anti nausea medication. I wish you all the best! With a little preparation you can do this!

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Profile picture for rlf66 @rlf66attnet

@lls8000 . Hello, what types of treatments did u receive that YOU are alive 5 years later?? chemo? radiation?
I'm waiting for final diagnosis for stage 4 lung cancer. NO word from my doctor yet, if I need biopsies of lung and lymph nodes. Also final results of thyroid scan. It metastized to my skin of right temple. That is why we found I had cancer w/out any signs and symptoms at all.
Thanks so much. I am scared about what I have read about immunotherapy meds!! very scary!

Jump to this post

@rlf66attnet , Knowing the specific type of cancer is important. That allows our doctors to match a treatment to what may be driving the cancer. I have a specific mutation known as ALK positive lung cancer. I started taking a targeted therapy (pills) that is specific to that mutation. The therapy is called alectinib. I know that I am very fortunate to have found a treatment that has worked well for me. I hope you are able to find a treatment that is as effective for you too. My cancer was first identified through a biopsy of the lymph node, and then later refined to knowing that it was driven by the ALK mutation through a liquid/blood biopsy. Are you asking your doctor for biopsies? They can be helpful.

REPLY
Profile picture for mil63 @mil63

@lls8000 thank you . We had a second opinion at Mayo when we started and they concurred 💯 with the first line treatment I mentioned in our local hospital .
It’s chemo carboplantin, alimta and additionally immunotherapy- keytruda.
The second line explained to us is :
Fam- Trastuzumab deruxtecan-nxki for HER 2 over expression in non small cell lung adenocarcinoma. (if we find first line not working)
It seems to be working at mid cycles but it feels like , are we wasting time? Can it be more successful do other ?
Obviously we are still getting educated and it is overwhelming. It’s a scary feeling to think we have to negotiate .

Jump to this post

@mil63 , Knowing that you have a second opinion that agrees with the treatment is reassuring. I'm sure you want the best for your husband, that's obvious. Sometimes that may mean leaving another treatment that is known to be effective as a future step. Possibly, it's that the doctors want to 'save' that treatment for later. Knowing that there is another treatment available down the road is reassuring. As stage IV patients, we depend on knowing that there are options available, options that are proven to be successful, when our current treatments fail. That gives me hope. It makes it easier to go in for surveillance scans. I know when (not if) my cancer progresses, I have another treatment lined up and ready to go. We never want to be out of options. It's a difficult discussion, but it may be helpful to talk with his oncologist about this too.
I know his diagnosis is a lot to process and take in. Your head is likely spinning, and that's expected. You're trying to do your best to support him, and that's what great care partners do! He's fortunate to have you by his side. At his next appointment, can you ask about the order of treatments?

REPLY
Profile picture for Lisa, Volunteer Mentor @lls8000

@rlf66attnet , Knowing the specific type of cancer is important. That allows our doctors to match a treatment to what may be driving the cancer. I have a specific mutation known as ALK positive lung cancer. I started taking a targeted therapy (pills) that is specific to that mutation. The therapy is called alectinib. I know that I am very fortunate to have found a treatment that has worked well for me. I hope you are able to find a treatment that is as effective for you too. My cancer was first identified through a biopsy of the lymph node, and then later refined to knowing that it was driven by the ALK mutation through a liquid/blood biopsy. Are you asking your doctor for biopsies? They can be helpful.

Jump to this post

@lls8000 . I have NOT been able to speak to my onologist about any treatment plan yet she was to call me on Tuesday. But I think I will call and leave her a second message. Doctors get very busy an forget what they tell their numerous patients. I hope that I can find a suitable treatment plan which helps me stay around a bit longer on this planet. Thanks so much for sharing your cancer story with me.

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