I have been on Tafinlar for about 6 months, and in the past month have also been on Menkist. I thought I was failing again, so I literally ran to Dr. Pavlick’s office and my scalp mets (relatively new) look better on their photo, and even better, my LDH went down considerably. Have MRI scheduled for 2/12. My brain feels ok (no loss of speech, confusion, etc. that have accompanied prior mets.)
Dr. P told me about Pan-RAF yesterday, which is in a phase 1 clinical trial. I’ve been researching it, and found it on clinicaltrials.gov. The # is MLN2480.
Supposedly it’s for use in BRAF+ people…I THINK they either use it alone or might take away the Menkist and add the Pan-RAF drug. I also think it’s for MEK resistance???
I said to her “well, what happens if I fail with BRAF/MEK and PD1 is still not approved; will I miss out on this trial like I did at Sloan with PD1 phase1?” She said no, she thinks this will be around for a while.
Catherine and anyone else…anyone know anything about it?
Karen, here’s another PAN-RAF inhibitor: LY3009120 from Eli Lilly. The trial is currently recruiting (at least per clinicaltrials.gov) in Arizona, TX and Boston. I talked to the coordinator in Arizona, they’re definitely recruiting there. Per the coordinator the drug is currently for all mutation types, i.e., not restricted to having or not having a BRAF mutation.
There is so much work being done with different molecules etc, it is hard to keep up! But we can’t really comment on anything until it gets to a Phase II or III trial. It is an exciting time! Hope the Pan-raf pans out!
My oncologist’s first choice for me would be an immunotherapy trial, not the easiest thing to get into as you know (toxicity delays from dose escalation cohorts seem to be universal, delaying dose expansion). Next choice would be IPI reinduction. Or some new MEK combo trials accepting NRAS patients (e.g., MEK + AKT). I want to get enrolled soon, or else do IPI again and hope for few side effects the 2nd time as well. Otherwise more worried about progression in the meantime.
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