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June 26, 2012 at 8:42 pm #20404WendyPamParticipant
After reading many different post and articles on Anti-pd1 and pd1L I am wondering how to get your tumor tested for this? Are there private companies doing this type of tumor testing? Also is it smart to do any genetic tumor testing to see what my Mom might better respond to? My Mom is Braf and C-kit negative with mucosal melanoma.
My Mom is currently taking Carbo/Abraxane until we can get into an Anti-pd1 trial. Our clinic is starting an Anti-pd1L trial in Aug. I asked our Dr today again if we could have her tumor tested for the Anti-pd1L and this was his answer, “I’m still trying to figure that out”
From what he was telling me if she was to do this trial they would test her during the trial. I would rather see her tested before even if we have to pay out of pocket. I rather see if she would respond then to participate in a trial that won’t help and figure out another plan of action.
After reading so much and talking with other I asked about adding Avastin into her treatment. He said that it’s hard to get approval from the insurance company. I said we’ll pay for it! He said the Dr’s in Southern California have gotten away with it. He was totally open to it. He then had mixed opinions of it. We have one more treatment to this cycle and might add it to cycle #2. My Mom does now have organ involvement, but her tumor burden is still on the lower side I think. Our biggest concern right now is the spleen.
If anyone knows of a lab that can test for the Anti-pdL1 that would be great. Also, if the gene testing is a smart move to see what mutations she might harbor. So far everything we have tested for has been against us. Braf(-) C-Kit(-),hla002, NYE???( i forgot this one).
Thank you so much for you input!
WendyJune 26, 2012 at 9:07 pm #55021patiParticipant
I had my tumor tested for PD1 and PDL1 expression at a research lab, so I do not know of anyone who could do this “commercially” – But I would encourage you to find out if one of the current LABs in the US might be interested in collecting tumors for research in exchange of you getting this information…Maybe Catherine could find out through scientific board
PatiJune 27, 2012 at 5:24 pm #55022Catherine PooleKeymaster
I’ve asked my Scientific Board and they were all pretty negative about this, here is one of the longer responses: “There is no routine test, the current assay on paraffin embedded tissue based on Lieping Chen’s antibody is tricky, we are not yet certain based on those small numbers that you need expression to respond, and even if a test was available and positive, there aren’t enough slots for trials right now.
Genentech has an internal assay but not available to patients.
This is not a good idea just yet
“June 28, 2012 at 4:33 am #55023LynnLucParticipant Obviously the test exists..BMS is requesting all of us at Moffitt doing anti pd-1 (about 110) to sign releases so they can can have tumor slides to test for PDL1. They think if you have it you will respond and if you don’t, you won’t…I can see why it wold be important to have this test…
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