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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@dougmck

Thanks, I was able to read the ablation paper from the link. This makes me wonder why the procedure isn't used more often. I don't currently have a pulmonologist, I'll check out the PFT internet page.

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Here is another article on CT guided ablation with some PFT values
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9096293/
(key PFT measures FEV1, DLCO)

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@vic83

Here is another article on CT guided ablation with some PFT values
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9096293/
(key PFT measures FEV1, DLCO)

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Thanks for all these resources. I'm meeting with my oncologist tomorrow morning, I'm going to suggest this procedure rather than radiation.

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@dougmck

Thanks for all these resources. I'm meeting with my oncologist tomorrow morning, I'm going to suggest this procedure rather than radiation.

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Good luck, I am curious to hear what he says.
I had pneumonitis with just one round of SBRT (3 sessions) and the Radiation Oncologist did mention ablation as a possibility in the future.

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@vic83

Good luck, I am curious to hear what he says.
I had pneumonitis with just one round of SBRT (3 sessions) and the Radiation Oncologist did mention ablation as a possibility in the future.

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Hi. I spoke with my oncologist this morning, he's going to talk with my radiologist about the possibility of using ablation. He also stated that he didn't feel we were in a "danger zone" by treating the current 14mm nodule with radiation again, although he said it would be her call in the long run. We also discussed the possibility of using Keytruda in the future, and he clarified that although most of his patients who have the PD-L1 biomarker have seen more improvement with that immunotherapy drug, he's also seen improvement in patients that don't have it. So that was kind of encouraging.

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@dougmck

Hi. I spoke with my oncologist this morning, he's going to talk with my radiologist about the possibility of using ablation. He also stated that he didn't feel we were in a "danger zone" by treating the current 14mm nodule with radiation again, although he said it would be her call in the long run. We also discussed the possibility of using Keytruda in the future, and he clarified that although most of his patients who have the PD-L1 biomarker have seen more improvement with that immunotherapy drug, he's also seen improvement in patients that don't have it. So that was kind of encouraging.

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That will be interesting to hear feedback.
My work background provided me with a good skill in researching information. Paying attention can provide big benefit even with these Specialists. Example: I knew cardiac stent requires bllod thinning medication for min 6 months and one can't do any surgery. So, when I unexpectedly needed a stent - same time as I was scheduled to go to Mayo, I told local Cardiologist while I was on the angiogram table, and they medicated me instead of placing a stent. I then could do the lung cancer surgery which otherwise would have had to be postponed. ALSO, I then learned that one could not take the Covid anti-viral Paxlovid with Plavix required for the stent. And then I tested positive for Covid! I had already contacted a doctor at Mayo about monoclonal treatment as good as Paxlovid. He set me up so I got the treatment...locally they couldn't even give me an appointment in the required time frame for administration!
I too have an appt this week (to discuss best anti-fibrotic drug in my situation). But will send you any good info I find. I know there is more than one type of ablation (hot, cold, etc) and now they are even looking at going down the throat instead of piercing the lung. And if ablation conserves more lung tissue than radiation? I want my doctors to think ahead and not just the next nodule. Some treatments then prohibit other treatments so the sequence of treatment types would seem important to me.

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@vic83

That will be interesting to hear feedback.
My work background provided me with a good skill in researching information. Paying attention can provide big benefit even with these Specialists. Example: I knew cardiac stent requires bllod thinning medication for min 6 months and one can't do any surgery. So, when I unexpectedly needed a stent - same time as I was scheduled to go to Mayo, I told local Cardiologist while I was on the angiogram table, and they medicated me instead of placing a stent. I then could do the lung cancer surgery which otherwise would have had to be postponed. ALSO, I then learned that one could not take the Covid anti-viral Paxlovid with Plavix required for the stent. And then I tested positive for Covid! I had already contacted a doctor at Mayo about monoclonal treatment as good as Paxlovid. He set me up so I got the treatment...locally they couldn't even give me an appointment in the required time frame for administration!
I too have an appt this week (to discuss best anti-fibrotic drug in my situation). But will send you any good info I find. I know there is more than one type of ablation (hot, cold, etc) and now they are even looking at going down the throat instead of piercing the lung. And if ablation conserves more lung tissue than radiation? I want my doctors to think ahead and not just the next nodule. Some treatments then prohibit other treatments so the sequence of treatment types would seem important to me.

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You've been a great resource for me, thank you. If they can do ablation through the throat, that's probably a better option. You have much less of chance of a dealing with the possibility of a pneumothorax that way. Have doctors been able to tell how much of your lung tissue is fibrotic?

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@dougmck

You've been a great resource for me, thank you. If they can do ablation through the throat, that's probably a better option. You have much less of chance of a dealing with the possibility of a pneumothorax that way. Have doctors been able to tell how much of your lung tissue is fibrotic?

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The CT scans describe a lot but they are for nodules, and I don't know if that is the same amount of detail as the HRCT described for diagnosis...although they do set the machine to pick up small nodules. I will ask the Specialist I am going to see. My PFTs indicate alot!

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I asked my oncologist today just how many "multiple" nodules I have in both lungs and he explained that it's difficult to determine on a CT because they're all of so many different sizes... some could be less than a mm and they're difficult to spot. He said they tend to focus on the ones that are discernible and continue to grow in size instead. I'd really like to know how many I actually have, but I probably never will. I've always wished there was a way to they could actually go into my lungs with a camera and we could look around for awhile to see what they look like.

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