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 for your reply. So you were on an immunotherapy drug when you had the pneumonitis. and, if so, which one? My oncologist has told me his Keytruda patients have a higher risk of adverse effects if they've had previous radiation but seems to still want me to consider it as he's feeling like he doesn't know how to treat this anymore. I had a very large lung tumor in 2008 we defeated with radiation and chemo in 2008, and then in 2018 I started experiencing these malignant lung nodules. I'm getting ready to schedule SBRT for a fourth one which is now at 14mm. I'm a little freaked out about what to do.

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Sorry for the confusion. I have not yet been given an immunotherapy drug. My Multifocal lung cancer consists of multiple independent cancers in the lungs, usually slow growing. Maybe some are metastasis, but they are considered primary for now because not possible to know. When one is getting too big or in bad position, they threat it. I have had two VAT surgeries (one nodule each time, both stage 1 cancers) and one round of SBRT (for 2 nodules).
They mentioned immunotherapy at one point but then took it off the table after my episode of radiation-induced pneumonitis. But it may not always be off the table.
With my additional problem of pulmonary fibrosis, my risk is higher for pneumonitis episodes with various cancer treatments. I will start an antifibrotic drug for the pulmonary fibrosis.
While they need to do a lot of research, the interesting question is whether such drugs might help protect me against pneumonitis outbreaks from any cancer treatments I need. From that one could ask if such a drug could also be useful for "pure" cancer patients against pneumonitis.....of course the answer to that question has got to be a long way off

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@vic83

Sorry for the confusion. I have not yet been given an immunotherapy drug. My Multifocal lung cancer consists of multiple independent cancers in the lungs, usually slow growing. Maybe some are metastasis, but they are considered primary for now because not possible to know. When one is getting too big or in bad position, they threat it. I have had two VAT surgeries (one nodule each time, both stage 1 cancers) and one round of SBRT (for 2 nodules).
They mentioned immunotherapy at one point but then took it off the table after my episode of radiation-induced pneumonitis. But it may not always be off the table.
With my additional problem of pulmonary fibrosis, my risk is higher for pneumonitis episodes with various cancer treatments. I will start an antifibrotic drug for the pulmonary fibrosis.
While they need to do a lot of research, the interesting question is whether such drugs might help protect me against pneumonitis outbreaks from any cancer treatments I need. From that one could ask if such a drug could also be useful for "pure" cancer patients against pneumonitis.....of course the answer to that question has got to be a long way off

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Thanks for the clarification. I'm also diagnosed with multifocal LC. For some reason I have multiple nodules in both lungs and we're treating them with SBRT as one becomes more solid. So far I've had four instances since 2018. My radiologist is telling me we can't continue to keep radiating, and my oncologist is not wanting to do any surgery like wedge resections. So we're looking at Keytruda, although there isn't any real data yet on whether or not it's effective for nodules. He's also warned me about the risk of pneumonitis due to all the radiation I've had.

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Good Day all….
After going through two rounds of chemo and radiation I have found that my cancer is growing. The options that my oncologist gave me are:
1: try a new chemo of Taxotere and Ramucirumab
2: immunotherapy Ipilimumab and Nivolumab

Until now I was not considered a candidate for immunotherapy because my PDL is zero and also I had one bout of Colitis several years ago. Not sure why he feels this is an option for me now. I think he’s just throwing me a bone because nothing else has helped?
I have a little time to make a decision. Primary tumor shows slight growth but 5 new modules have showed up, I want to take my grandkids on one last vacation before I start any treatment again. Vacation planned for two weeks from now.
I’m in the fence about what to do, has anyone had experience with either of these options?
The chemo will for sure cause complete loss of hair, as trivial as that may seem it’s a big deal to me. I’ve been very private about having cancer and losing all my hair will be a big blow to me. As for the immunotherapy I wonder about that because I don’t have the markers and I’ve heard about some terrible side effects from immunotherapy drugs.
Any advice or experiences to share?

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@dougmck

Thanks for the clarification. I'm also diagnosed with multifocal LC. For some reason I have multiple nodules in both lungs and we're treating them with SBRT as one becomes more solid. So far I've had four instances since 2018. My radiologist is telling me we can't continue to keep radiating, and my oncologist is not wanting to do any surgery like wedge resections. So we're looking at Keytruda, although there isn't any real data yet on whether or not it's effective for nodules. He's also warned me about the risk of pneumonitis due to all the radiation I've had.

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I too have nodules in both lungs. That means we have bilateral multifocal adenocarcinoma. I had wedge resections RUL and LUL and then SBRT on RUL. I have smaller nodules in other lobes which are being watched.
They told me before the SBRT that radiation makes Swiss cheese out of the lung...I tell my doctors to think strategically because there is always another nodule. Why do they say surgery is not an option for you? How are your pulmonary function tests? As far as I know treatment options are surgery, radiation, immunotherapy, targeted therapy, chemotherapy and Ablation. Of course, treatment options depend on many factors including location. I am looking at ablation as a possibility in the future. With my pulmonary fibrosis now a factor, I know it is going to be complicated going forward. I really need multiple specialists to think it out.

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@detroitmom23

Good Day all….
After going through two rounds of chemo and radiation I have found that my cancer is growing. The options that my oncologist gave me are:
1: try a new chemo of Taxotere and Ramucirumab
2: immunotherapy Ipilimumab and Nivolumab

Until now I was not considered a candidate for immunotherapy because my PDL is zero and also I had one bout of Colitis several years ago. Not sure why he feels this is an option for me now. I think he’s just throwing me a bone because nothing else has helped?
I have a little time to make a decision. Primary tumor shows slight growth but 5 new modules have showed up, I want to take my grandkids on one last vacation before I start any treatment again. Vacation planned for two weeks from now.
I’m in the fence about what to do, has anyone had experience with either of these options?
The chemo will for sure cause complete loss of hair, as trivial as that may seem it’s a big deal to me. I’ve been very private about having cancer and losing all my hair will be a big blow to me. As for the immunotherapy I wonder about that because I don’t have the markers and I’ve heard about some terrible side effects from immunotherapy drugs.
Any advice or experiences to share?

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@detroitmom23, I'm so sorry to hear this news. I wish the treatments would have been more effective for you.
Possibly Cynde @loula can comment on experience with Taxotere.
I'm glad that you are taking some time to take your grandchildren on a trip. That's great therapy for all of you! I'm sure they love you so much and treasure the time they spend with you.
The potential for hair loss isn't trivial. Many of us are able to go through life not looking like a typical cancer patient (whatever that means today). Did your doctor mention any steps to reduce the hair loss, if possible? Some people try cold capping, but it may not always be effective and can extend your time in the infusion center. I think it depends on the person and the strength of the chemo.
(https://connect.mayoclinic.org/discussion/wigs-1/
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/mayo-clinic-q-and-a-cold-cap-therapy-can-reduce-hair-loss-caused-by-chemotherapy-1/)
The options presented to you should be rooted in science, your doctor should be explaining why they believe the treatments might be effective, and safe for you. Many of us will face these difficult decisions, but we're not doctors or scientists. It's difficult to understand the options, and even more difficult to feel that we're making educated decisions. Do you think another opinion might be helpful?

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Would you consider a second opinion? If you're not at Henry Dord Detroit I would see Dr Shireesh Gadgeel. Otherwise, U Mich-Dr Kalemkarian.

Either would be a good option to talk to about clinical trials as well.

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@detroitmom23

Good Day all….
After going through two rounds of chemo and radiation I have found that my cancer is growing. The options that my oncologist gave me are:
1: try a new chemo of Taxotere and Ramucirumab
2: immunotherapy Ipilimumab and Nivolumab

Until now I was not considered a candidate for immunotherapy because my PDL is zero and also I had one bout of Colitis several years ago. Not sure why he feels this is an option for me now. I think he’s just throwing me a bone because nothing else has helped?
I have a little time to make a decision. Primary tumor shows slight growth but 5 new modules have showed up, I want to take my grandkids on one last vacation before I start any treatment again. Vacation planned for two weeks from now.
I’m in the fence about what to do, has anyone had experience with either of these options?
The chemo will for sure cause complete loss of hair, as trivial as that may seem it’s a big deal to me. I’ve been very private about having cancer and losing all my hair will be a big blow to me. As for the immunotherapy I wonder about that because I don’t have the markers and I’ve heard about some terrible side effects from immunotherapy drugs.
Any advice or experiences to share?

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What markers do you need to have in order to receive immunotherapy? Thx

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@abob

What markers do you need to have in order to receive immunotherapy? Thx

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To be honest I’m not completely sure. I know it’s referred to as PDL and mine is zero.

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@detroitmom23

To be honest I’m not completely sure. I know it’s referred to as PDL and mine is zero.

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This is what I’ve just found:

“A PD-L1 test uses a sample of cancerous tumor tissue to measure how much of a protein called PD-L1 is found on the cancer cells. If you have certain types of cancer, PD-L1 testing can check whether you may benefit from a type of cancer treatment called immunotherapy.”

So it seems that immunotherapy only works if you have/had PD-L1 in your cancer cells?

I don’t know if my husband’s original LC tumor had PD-L1 cells. And altho the mass on his adrenal glad thought to be LC metastasis, the biopsy sample did not report cancerous cells. So I do not know if he qualifies for immunotherapy.

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@vic83

I too have nodules in both lungs. That means we have bilateral multifocal adenocarcinoma. I had wedge resections RUL and LUL and then SBRT on RUL. I have smaller nodules in other lobes which are being watched.
They told me before the SBRT that radiation makes Swiss cheese out of the lung...I tell my doctors to think strategically because there is always another nodule. Why do they say surgery is not an option for you? How are your pulmonary function tests? As far as I know treatment options are surgery, radiation, immunotherapy, targeted therapy, chemotherapy and Ablation. Of course, treatment options depend on many factors including location. I am looking at ablation as a possibility in the future. With my pulmonary fibrosis now a factor, I know it is going to be complicated going forward. I really need multiple specialists to think it out.

Jump to this post

My oncologist doesn't seem to want any surgery performed because he says it will create "too much tissue loss," I'm assuming because I've had extensive radiation in the past and they're concerned also about fibrosis as a result of that. I've never gotten a clear answer. I had a pulmonary finction test about five years ago and the results showed some slight COPD (yes, I was a previous smoker), but I'm on the ellipticals at the gym for 25 minutes 3 days a week with no difficulty. We have talked about ablation, but my radiologist has said that they've seen mixed results with it. I'm meeting with my oncologist on Wednesday morning, I'm going to try and get more information.

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