Immunotherapy

I don't know the answer to that. Hopefully someone on here will have an answer for you. Have a good day.

I'm on a couple of Keytruda groups on Facebook and several members have stated their PD-L1 count was 0 and yet they've still had great results with the immunotherapy drug. I've had recurrent lung nodules and my oncologist is looking at starting me on Keytruda (there's been a clinical trial at M.D. Anderson using it with nodules, also with some good results). I also have just learned from a biopsy that I'm PD-L1 negative, which was disappointing. I've heard that the first thing insurance companies look at when doctors recommend immunotherapy is the patient's PD-L1 status. If that's correct, I doubt I'll be able to try this drug out because I can't the ridiculous costs of paying for it out of pocket. Maybe other members can comment on this.

Hi @autumnwarriorsr, Sorry to hear that your PD-L1 test came back 'negative'. That generally means that your tumor cells don't have enough of the PD-L1 protein for immunotherapy to be effective. But as dougmck noted, the rules don't seem to apply in every situation. In most medical scenarios there are cases that prove the experts wrong.
(https://medlineplus.gov/lab-tests/pdl1-immunotherapy-tests/)
Hoping that you find an effective treatment.

My PDL1 is less than 1 but my oncologist has me on Keytruda because it has worked for people with PDL1 of 0.

And yes each is different. Some with a PDL1 of close to 100 have no response with those of a level less than 1 have a tremendous response.

Check out this link re pd-l1 and immunotherapy
https://www.gene.com/stories/understanding-pd-l1

What kind of results have you seen so far?

yes they say very faint light up on pet scan told may be scar tissue they have another ct scan for feb

I've only had a single infusion. I won't have a CT till after #3. This is my second lung cancer. The 1st was 14 years ago. It's a completely different primary rather than progression.

That said, I've met many at patient education conferences who have been on this protocol who did respond. Consider joining us at this years Lungevity Hope Summit.