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?

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

@abob

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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I'm also confused by this. My oncologist works a lot with immunotherapies at UCSF and he's told me I'm still a candidate for Keytruda even though they couldn't find any biomarkers and there is no evidence of PD-L1. I can't find much information on the internet about being successfully treated with immunotherapy drugs if you don't have biomarkers.

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@dougmck

I'm also confused by this. My oncologist works a lot with immunotherapies at UCSF and he's told me I'm still a candidate for Keytruda even though they couldn't find any biomarkers and there is no evidence of PD-L1. I can't find much information on the internet about being successfully treated with immunotherapy drugs if you don't have biomarkers.

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I found situations when Keytruda can be used. Many do not mention PD-L1. I think the below applies to my husband.

“KEYTRUDA is a prescription medicine used to treat a kind of lung cancer called non–small cell lung cancer (NSCLC).
- It may be used with the chemotherapy medicines pemetrexed and a platinum as your first treatment when your lung cancer has spread (advanced NSCLC) and is a type called “nonsquamous” and your tumor does not have an abnormal “EGFR” or “ALK” gene. “

Here’s the link:
https://www.keytruda.com/keytruda-faq/

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@abob

I found situations when Keytruda can be used. Many do not mention PD-L1. I think the below applies to my husband.

“KEYTRUDA is a prescription medicine used to treat a kind of lung cancer called non–small cell lung cancer (NSCLC).
- It may be used with the chemotherapy medicines pemetrexed and a platinum as your first treatment when your lung cancer has spread (advanced NSCLC) and is a type called “nonsquamous” and your tumor does not have an abnormal “EGFR” or “ALK” gene. “

Here’s the link:
https://www.keytruda.com/keytruda-faq/

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Thanks for this, I had seen this on their website, but I'm still a little bit confused... does this mean it can only be used in conjunction with a platinum-based chemotherapy and not just by itself?

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@abob

I found situations when Keytruda can be used. Many do not mention PD-L1. I think the below applies to my husband.

“KEYTRUDA is a prescription medicine used to treat a kind of lung cancer called non–small cell lung cancer (NSCLC).
- It may be used with the chemotherapy medicines pemetrexed and a platinum as your first treatment when your lung cancer has spread (advanced NSCLC) and is a type called “nonsquamous” and your tumor does not have an abnormal “EGFR” or “ALK” gene. “

Here’s the link:
https://www.keytruda.com/keytruda-faq/

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Much is being learned as time goes on, that's a good thing! Research, and sometimes just trying something outside the traditional standard, can save lives.
Immunotherapies, like Keytruda, can be quite effective for some patients, but they are not able to treat all cancers. In general terms, immunotherapies treat cancer by training your own immune system to find and attack certain types of cancer cells.
One determiner of how well immunotherapy may work is a test called PDL-1. Generally, patients with a high PDL-1 will respond better to immunotherapy than those with a low PDL-1, because there is a good match between the type of cancer cells and the ability to train the immune systems to find those cells. The PDL-1 test would usually be performed when a biopsy is done.
Of course, like any treatment, immunotherapy can carry along with it some significant side effects.

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@dougmck

Thanks for this, I had seen this on their website, but I'm still a little bit confused... does this mean it can only be used in conjunction with a platinum-based chemotherapy and not just by itself?

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No, this seems to be the usage that matches my husband. The link shows many more usages .

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@dougmck

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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I would ask for a new pulmonary function test, five years is a long time. It will tell you what capacity you have lost with the treatments, etc. They are simple and not expensive. Fibrosis (scarring) can be caused by many things including radiation and lung does not repair itself. I attach an article from Mass General - note page 18 "Percutaneous Ablation of Lung Tumors"
Does your Oncologist discuss your case with a Tumor Board?

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@vic83

I would ask for a new pulmonary function test, five years is a long time. It will tell you what capacity you have lost with the treatments, etc. They are simple and not expensive. Fibrosis (scarring) can be caused by many things including radiation and lung does not repair itself. I attach an article from Mass General - note page 18 "Percutaneous Ablation of Lung Tumors"
Does your Oncologist discuss your case with a Tumor Board?

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My oncologist brought my case up to the tumor board and they concur with him. I also got a second opinion from another oncologist who's at Stanford, who also said he would treat me in the same manner as my oncologist. I'll ask my radiologist about scheduling another PFT... I really hate doing them, I have to consistently blow into a tube over and over again for 45 minutes until I start getting dizzy. Re: the attachment re: ablation, I'm not seeing an attachment. Do you possibly have a link to the paper? Thanks very much for all your info, by the way.

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@dougmck

My oncologist brought my case up to the tumor board and they concur with him. I also got a second opinion from another oncologist who's at Stanford, who also said he would treat me in the same manner as my oncologist. I'll ask my radiologist about scheduling another PFT... I really hate doing them, I have to consistently blow into a tube over and over again for 45 minutes until I start getting dizzy. Re: the attachment re: ablation, I'm not seeing an attachment. Do you possibly have a link to the paper? Thanks very much for all your info, by the way.

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I swore I attached the article! Anyway here is a link to another article that talks about ablation (always for people with interstitial disease -like me now). https://www.ajronline.org/doi/10.2214/AJR.23.30300#:~:text=Percutaneous%20ablation%20appears%20to%20be%20safe%20and%20effective%20for%20stage,)%20%5B1%2C%202%5D.
Regarding the pulmonary function test, I know they are boring - I have done five in the last year. But do you have a pulmonologist? My Radiation Oncologist righty says she is not a Pulmonologist. PFTs are not that easy to interpret
even if the report provides summary. They can indicate the difference between COPD and some other type of pulmonary disease. But if you go to the Pulmonary Fibrosis Foundation Internet page they have a document which explains PFTs.

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@vic83

I swore I attached the article! Anyway here is a link to another article that talks about ablation (always for people with interstitial disease -like me now). https://www.ajronline.org/doi/10.2214/AJR.23.30300#:~:text=Percutaneous%20ablation%20appears%20to%20be%20safe%20and%20effective%20for%20stage,)%20%5B1%2C%202%5D.
Regarding the pulmonary function test, I know they are boring - I have done five in the last year. But do you have a pulmonologist? My Radiation Oncologist righty says she is not a Pulmonologist. PFTs are not that easy to interpret
even if the report provides summary. They can indicate the difference between COPD and some other type of pulmonary disease. But if you go to the Pulmonary Fibrosis Foundation Internet page they have a document which explains PFTs.

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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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@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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Google for "CT guided ablation" also - one needs place where someone is trained to do it
Here is booklet that has explanation of pulmonary function tests. Based on your age and weight there is a predicted value and then you are measured on the percent you perform against the "predicted value". Key measures as far as I understand are FEV(or FEV1), DLCO and lung volume capacity
https://www.pulmonaryfibrosis.org/docs/default-source/programs/educational-materials/pf-information-guides/pf-info-guide.pdf

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