100% PDL-1

Posted by ta52 @ta52, Dec 18, 2020

Before starting immunotherapy my oncologist told me my PDL-1 rating was 100%. I've since read something that said 100% PDL-1 was impossible. If true I know this is really good news as it helps the immunotherapy greatly but I would like to know if anyone else was at 100%?

Good morning @ta52. I have never heard of PDL-1. Do you know what it means for you? Here is a short explanation hat I found:

What is pdl1 in lung cancer?
This test measures the amount of PDL1 on cancer cells. PDL1 is a protein that helps keep immune cells from attacking nonharmful cells in the body. Normally, the immune system fights foreign substances like viruses and bacteria, and not your own healthy cells. Some cancer cells have high amounts of PDL1. Jul 31, 2020 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6413136/)

It looks like a good score is very good, that you are a good candidate for immunotherapy. Are you having success with your immunotherapy? Sometimes numbers are very confusing. Do you have the actual lab report that gives you what these scores mean?

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Good morning!, are you newly diagnosed? Non-small cell? A high PDL1 can be a sign of a genetic mutation in the cancer. Have you had biomarker testing completed?
I have an ALK gene mutation, and I was showing a 95% PDL-1. Which would generally point oncologists to immunotherapy, but immunotherapy is ineffective in my type of lung cancer. I am treated with a targeted therapy, pills. Biomarker testing is an important step in finding the exact type of lung cancer.
Wishing you good news in the days to come.

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@lls800- Hi. No, not new, I've had lung cancer for 23+ years. I have multifocal adenocarcinoma. So far there isn't immunotherapy for this. My best bet, for now, is SRBT- is a very powerful, targeted type radiation using proton or photon radiation. The table and machine look like it's from another world! lol.

I have my 6 month CT scan today! How are you feeling?

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My PDL1 was 80% which I was told was very good if I needed immunotherapy which I did end up having last but I ended up being taken off as my arthritis was so bad I had no quality of life and I had a small stroke. 🥲

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@merpreb

@lls800- Hi. No, not new, I've had lung cancer for 23+ years. I have multifocal adenocarcinoma. So far there isn't immunotherapy for this. My best bet, for now, is SRBT- is a very powerful, targeted type radiation using proton or photon radiation. The table and machine look like it's from another world! lol.

I have my 6 month CT scan today! How are you feeling?

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Sorry, I was wondering if ta52 was newly diagnosed.
Good luck with you scans, stay strong!
I’m feeling really good. Thanks.

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@merpreb

Good morning @ta52. I have never heard of PDL-1. Do you know what it means for you? Here is a short explanation hat I found:

What is pdl1 in lung cancer?
This test measures the amount of PDL1 on cancer cells. PDL1 is a protein that helps keep immune cells from attacking nonharmful cells in the body. Normally, the immune system fights foreign substances like viruses and bacteria, and not your own healthy cells. Some cancer cells have high amounts of PDL1. Jul 31, 2020 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6413136/)

It looks like a good score is very good, that you are a good candidate for immunotherapy. Are you having success with your immunotherapy? Sometimes numbers are very confusing. Do you have the actual lab report that gives you what these scores mean?

Jump to this post

I will have infusion #4 on the 28th. Since my side effects are minimal they are going to do a CT to check for progress in mid-January and then, if need be, keep going with infusions every three weeks. I haven't been able to find anything online that explains PDL-1 percentages and how they equate to overall success levels and 100% just doesn't seem possible. Thanks @merpreb !

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@lls8000

Good morning!, are you newly diagnosed? Non-small cell? A high PDL1 can be a sign of a genetic mutation in the cancer. Have you had biomarker testing completed?
I have an ALK gene mutation, and I was showing a 95% PDL-1. Which would generally point oncologists to immunotherapy, but immunotherapy is ineffective in my type of lung cancer. I am treated with a targeted therapy, pills. Biomarker testing is an important step in finding the exact type of lung cancer.
Wishing you good news in the days to come.

Jump to this post

@lls8000 My biomarker was KRAS but not a type that qualified me for targeted therapy so I am in immunotherapy (three of four initial sessions completed).

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My wife was 99 percent pd-L1 and her therapy has been going very well.

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@michaelw9dy

My wife was 99 percent pd-L1 and her therapy has been going very well.

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As has mine. Wish her continued success. After my first four infusions I had a 75-85% reduction in tumors and now I am on maintenance therapy for another three rounds. Your wife's success should be just as good if not better.

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