Not eligible for Immunotherapy. Now what?

Posted by detroitmom23 @detroitmom23, Nov 14, 2023

I have stage 3/4 adenocarcinoma non small cell . I have tumors in upper and lower right lobes as well as several affected lymph nodes is the neck area. Diagnosed about a year ago. Went through 5 rounds of chemo and 30 radiation treatments. I was told early on that I’m not eligible for immunotherapy due to not having the markers (?) and a past history of Colitis. I just got my first 3 month post treatment scan. Not good news. One tumor in upper lobe shrank but tumor in lower lobe increased. All of the lymph nodes in neck area increased in size with notes in my portal saying probable metastasis. Obviously very discouraged at this point. Just numb. I don’t see oncologist until Friday so don’t know what will happen next. Knowing that I’m not eligible for immunotherapy my guess is more chemo. Has anyone else gone through “round two” of chemo because you couldn’t get immunotherapy? We’re other treatments offered to you?

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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

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@hlolson

Seek a second opinion. There is world renound Oncologist at City of Hope in Duarte, CA that does genetic testing and uses targeted therapy.

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Hi @hlolson, I'm glad you are doing well on your targeted therapy. I was also fortunate enough to have a gene mutation with a targeted therapy option (ALK+, 3.5 years).
Unfortunately, we need more research to improve treatments for those lung cancers that aren't driven by gene mutations. There are way too many people suffering with this disease, it's disheartening.
A second opinion can be very useful. I recently added another lung cancer specific oncologist and their fellow to my team. More eyes on my case can only help as we move forward. Best of luck to you, I'm glad that you found a good fit with your care team!

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@hlolson

Seek a second opinion. There is world renound Oncologist at City of Hope in Duarte, CA that does genetic testing and uses targeted therapy.

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Thank you for the feedback. My oncologist has recommended another round of chemo. The same combo of drugs I had 7-8 months ago.
I am in the process of getting a second opinion. I have an option through my insurance called Grand Rounds where a team of specialists will review my medical records and provide an opinion. I’m still at a loss about the immunotherapy and hoping this second opinion will enlighten me.

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Seek a second opinion. There is world renound Oncologist at City of Hope in Duarte, CA that does genetic testing and uses targeted therapy.

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@mrnootz

The large tumor in my left lung was cooked and killed with Ablation at the Mayo Clinic in Rochester as an experiment. I am now 100% lung cancer free.

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What was your stage?

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@detroitmom23, My heart breaks for you, I really wish you had better news, but I'm glad you updated us.
Your health care team knows that immunotherapy can cause severe adverse events for patients with a history of colitis. There are people here who have told stories of ending immunotherapy treatment due to colitis. There are many success stories too. Every treatment is not right for everyone.
How did your appointment go today? What was recommended?
Hugs to you, take care.

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Personally- I would RUN, RIN, RUN to somewhere else for a second opinion and treatment!!! Maybe you see the same ‘team’ we did, who said ‘there wasn’t other trt.’, when in turn there WAS. WAS! as was confirmed by TWO other well known facilities who trt cancer! R-U-N!!!

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The large tumor in my left lung was cooked and killed with Ablation at the Mayo Clinic in Rochester as an experiment. I am now 100% lung cancer free.

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Did they do next Gen testing for mutations? Maybe there is a targeted therapy?

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