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January 30, 2014 at 2:54 am #21774zephyr66Participant
OK… the doctor of UC Irvine called us back regarding the PDL1 trial, and Catherine you were correct. They are only accepting participants for occular melanoma. I specifically told the intake woman on the phone what type of melanoma Amy had but regardless, glad I double checked with the doctor before we went up there and paid $800 for an appointment that would have been pointless. But, when I spoke with him he quickly said, “Oh, I have something better than PD1 for her”… and he said it was the drug Pazopanib (which is already brand named as Votrient and approved for Kidney cancer) and it was a trial that combined Pazopanib with low dose chemotherapy. He said for melanoma patients he is seeing a “90% response rate” and again, quickly and confidently said it was better than PD1 for melanoma. Of course, the skeptical side of me is wondering, “If it’s so great, why haven’t I heard about it”. So, this is my first question… has anyone heard of this trial with this drug combo?
Secondly, at UCLA Amy may be able to get into the PLX3397 trial. I know it’s a fairly new trial, but does anyone have any information about what this trial is, how it works, response rates, etc?
Such a scary time and we have to make a choice and move in some direction soon, but right now trying to find out all we can.January 30, 2014 at 9:44 am #63448dhrahnParticipant
I’m new on this site but wanted to tell you about a trial my husband is starting this next week at The Angeles Clinic. It is a new study drug msb0010445 + up to 3 areas of stereotactic body radiosurgery and biopsy. It’s all still very complicated to explain but something like The study drug is ” an immunocytokine consisting of a genetically modified , human monoclonal antibody fused to a genetically modified interleukin-2 (iL-2)” and the theory behind it is how the immune system will target tumors that have become necrotic post radiation better than say chemo. We were unable to get on the pd1 trial originally because my husband developed a brain met we had to deal with and now as you all know they are closed. The first visit will be a few days up in LA for bx, radiation and infusion and then every three weeks just for infusion. I have not been able to research much about this buy our neurosurgeon seemed pretty hyped about it as well as Dr. Hamid.
If anybody has anything to add or any knowledge please share. My husband has been battling since July 2012. He has been on Zelboraf and Yervoy. Thanks for all being here and sharing!
HollyJanuary 30, 2014 at 1:57 pm #63449lindamgParticipant
I found some info on pazopanib and paclitaxel (chemo) here:
which had a small number of subjects, with all patients treatment naive and with involvement from UC Irvine.
NCT01107665 for clinical trial perhaps? Not sure if that is the correct one, or if it is the one described to you.
These are such difficult decisions – hang in there.
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