I was diagnosed Stage 4 in 9/17. A 1/18 scan after 6 Keytruda treatments showed considerable disease progression, so I began Taf Mek 2/18. A scan done after 8 weeks showed great response – no new tumors, some small lung lesions disappeared, most tumors shrank, several were stable.
A PET/CT scan done 2 weeks ago again showed no new tumors, and all tumors that were shrinking in April continue to shrink. However, one of those tumors shows uptake of 12.5, which my Onco says means it’s rarin’ to take off. Tumors that were stable in April all show activity, one with an uptake of 26.2! Onco says we’re in the last days for Taf Mek.
The original plan had been to start Keytruda again, while staying on Taf Mek, thinking that by the time Taf Mek lost effectiveness, the Keytruda might be working (There were slight hints of response after my prior 4 mos. on Keytruda and Dr. thinks I could be a late responder). We’ve lost the luxury of time now, however, and Dr. is recommending a Phase 2 LN-144 trial. Interestingly, the tumor that’s going nuts is the first and only one I’ve had that’s resectable; the trial would get rid of that tumor via surgery, yielding a source for cells to harvest and genetic info that could inform future treatment decisions. All good, right?Onco says prior TIL + IL-2 has shown promise and, often, quick results. LN-144 has been fast-tracked by the FDA.
This sounds like a good course of action to me, given the need to get rid of the super-aggressive tumor and to get a fairly quick response for the other now-active tumors. I have no tumors that are accessible for injection, thus ruling out trials examining that methodology, and immunotherapy trials, my Dr. thinks, would likely generate a late response as with the Keytruda.
I’d welcome comments and suggestions. Not thrilled about IL-2, but will do what’s needed to slay this beast!
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