Not eligible for Immunotherapy. Now what?

I just saw your post on here and I had just sent you a message. I'm hoping you're getting those messages on this site, I just don't know sometimes. It almost looks like I'm sending it to myself. Anyway, I just read this post and I'm not happy to hear about this news. I Don't really understand why they wouldn't try immunotherapy if it could possibly help. How do they know it's not going to help? I mean I would want them to try everything. So I understand that. Have you seen the doctor at all since you posted this? Or talk to anyone? I sent you a private message so just respond there. I'm thinking about you.
Angela

I was diagnosed with stage 3c adenocarcinoma Non small cell in December 2022, I was not eligible for surgery because the cancer had spread to lymph nodes in my clavicle area. I underwent 5 rounds of chemo and 30 radiation treatments. About 6 months later I went through it all again. 5 more rounds of chemo and 15 radiation treatments. I just finished those second rounds 3 months ago and have another scan scheduled in about 10 days. I’m terrified because I haven’t been feeling well; increase in pain as well as coughing, I’m wondering how many times they would advise additional chemo and radiation when I’ve already been through it twice? Will they continue trying or tell me there’s nothing more they can do? I’m not eligible for immunotherapy. I don’t have the markers for it. Has anyone been through chemo and radiation more than twice?

Not me but others I've met through Lungevity and Go2 Foundation.

You mentioned earlier that your oncologist participated in a Grand Rounds program that sounds a bit like a tumor board. Please still consult a second opinion doctor. I saw Dr Shireesh Gadgeel at Henry Ford. They hired him away from UM to be new head of Thoracic Oncology. My 20 minute new patient consult lasted an hour and he told me more about my cancer than I had heard from my oncologist in 8 years.

It's my understanding that Keytruda has been approved for all levels of pd 1 or pdl 1 including negative. Please check with your oncologist.

The presence or absence of PD-L1 tells whether or not immunotherapy will work. I have PD-L1 with strong expression, but I'm still not a candidate for immunotherapy because I have the EGFR Exon 19 mutation. If an Oncologist tells someone they are not a candidate for immunotherapy, it means it won't work. 85% of lung cancer cases are non-small cell, so that's no help. She needs to ask her doctor what else he knows besides non-small cell adenocarcinoma. Nowadays, they're able to identify a lot of different subtypes, each with their own treatment recommendations.

We still have an awful lot to learn about lung cancer and cancer in general, but we are past the point of "try it and see if it works." At least for the most part. There are always exceptions.

Hi @detroitmom23, It's great to hear from you, but we all wish you were feeling better. Possibly you are still experiencing side effects from the treatments. Your body has been through so much. I know this isn't easy, but until I actually have the scan reports, I try to focus on the current day, and not speculate too much. Without knowing what's happening, it's hard to know what treatments may be available. I do hope you have access to the Grand Rounds again or a second opinion. Additional feedback for your case is a good idea.

I've seen Dr. Gadgeel give talks specific to ALK lung cancer, he seems amazing! I'm glad he's your doc. Exciting.

He gives does talks on an array of cancers. Lots of different adenocarcinoma mutations in addition to small cell. He's an advisor at CancerGRACE.org and regularly presents at ASCO.

He is my second opinion doctor and if need be I'll try back. I see Dr Winegarden at StJoes Trinity in Ann Arbor. If someone in my region can't get to Mayo, I recommend him next.

Thank you to all who replied to my post. It’s kind of weird how little I really know about my cancer compared to others who are highly aware of mutations, subtypes etc. I believe it’s my own fault that I don’t know. Most of it was discussed early in my diagnosis and my husband remembers things that I don’t. For example, he recalls the dr telling me that immunotherapy would only be less than 5% effective for me and that the side effects may not be worth the benefits. I also had one bout of ulcerative colitis about 8-10 years ago and apparently that can be a risk with immunotherapy.
What I do know is that I have adenocarcinoma non small cell and up until now it’s been regional with metatasis to clavicle lymph nodes. One thing that still makes me wonder is when my records were sent through Grand Rounds (an insurance benefit where I can have a team of doctors give a second opinion) one of the drs felt I had two types of cancer - adenocarcinoma as well as squamous cell. My own dr didn’t seem to agree with that at least not to the point where he would change treatment plans. I do believe it’s time to get yet another opinion and learn more about my cancer and potential options. I appreciate the input as well as referrals.

Ask about target therapy they have it for ur type, sorry ur unable to do the other therapy.