Results of DH’s Tuesday CT scan

The new q 4wk adm schedule for nivo may indeed serve DH well.  The ability to atttain a PD-L1 expression report is limited as not many labs do them.  In fact, most melanoma Big Dogs like Weber and others have noted that despite limited PD-L1 levels, many patients can gain a response anyway.  Dr. Daud has noted, "There isn't a level below which no responses were seen.  In other words, PD-L1 alone should not be used to deny immunotherapy with anti-PD-1 antibodies.  Conversely, even at the very highest levels of expression, there are patients who do not respond."   

In fact, others have asked about this very thing on the forum:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/pd-l1-expression-level-and#comment-113243

You can click that link to read it all, but here is part of my response in that discussion:

Re:  PD-L1 and effectiveness of immunotherapy ~ It's complicated!  Isn't that always the case with melanoma?  As I said in this post, a picture is sometimes better than explaining things with words.  Look at the picture I put in this link in the section "immunotherapy":  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  There you can see that if you don't have PD-L1 expression on your tumor, you could argue that t-cells wouldn't be attaching themselves to it and therefore failing to kill your tumor, so you wouldn't need ANTI-PD-1 to come in and bind to that switch on the t-cell.

However, as you can see from this discussion….it it not that straight forward:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html 

There, two melanoma experts discuss many things…but state specifically:

"Folks with tumors that are positive for PD-L1 respond better to anti-PD1 products.   However, many problems remain with the clarity of the test, availability of the test, consistency of results, etc.  Therefore, it is a useful…though not a predictive…marker."

"In PD-L1 positive patients: those in the combo had a 58% overall response vs 18% ORR to ipi alone.  PD-L1 negative patients: had an ORR of 55% to the combo vs 4% ORR to ipi alone."

"However, when looking at PD-L1 staining:  When positive, the difference between PFS with the ipi/nivo combo vs nivo alone is negligible. So the argument may be made to go with nivo alone…since the difference in response is minimal, but side effects are much less.  However, more definitive studies are needed."

So there is the issue of the test being valid…as well as knowing exactly what the test means.  I am not sure the data supports the decision to NOT to take anti-PD-1 (Keytruda and Opdivo) when a melanoma tumor is NOT positive for PD-L1.  Melanoma itself, and certainly its interaction in our body, is multi-faceted and one test (unfortunately) does not give us a clear cut answer.

There is more on the link..if you're interested.  Hang in there.  I think DH will find some good workable options.  Celeste

I agree, that is why I only support using PD-L1 to inform whether to do Nivo alone or Nivo + Ipi at the extremes of expression. A person with PD-L1 > 80% has a pretty darn solid shot of responding meaningfully to Nivo. A person with < 20% expression has a very decent shot, but perhaps the added potential toxicity of Ipilimumab is more likely to be "worth it" for this person. But of course, this is very subjective. The much more important part is the recognition of monthly dosing of Nivolumab and how advantageous it could be for a person in just this situation. You make excellent points, though, and many experts would agree with you. 

Majahops, where are you coming up with these #'s in Pd-L1+ % of 80 and 20, there is no data from clinical trials in Melanoma to support such comments in fact most Melanoma experts don't even look at the Pd-L1 status in making decision of choosing Ipi/nivo vs either Pd-1 drugs as a monotherapy. If medical treatment is not close by for the patient, why in the world would anyone go on a combination that is known to have a 50% grade 3-4 IRAE's with 30% having to stop treatment. It might be better in complicated situation like this one to let the medical professional give advice and stick to being supportive and not play doctor.

Clearly, I share your concerns, Ed.  I fear some folks may let their desired role in life roll over into advice shared on this forum.  No matter…but yes, the only time I have seen those numbers…and, if I remember properly they were found in only one study… it was related to NSCLC, not melanoma.

Sorry your thread was co-opted in this way, Old wife.  (Gosh…I don't like calling you that!  HA!!  We old wives don't get 'old'…we just gain grace, patience, and expertise…regarding our "old" husbands!  HA!  I've been married to my dude for over 20 years!  YIKES!!)  I think you are going to find workable options and a good treatment plan for DH!!!  Hang in there!  Celeste