So it seems that I am once again back to the drawing board and looking for what might be next—we have been through plan A, B, C, D (and then some)….and need a new one so I am hoping some of your keen minds may have some insight to throw at it. I have been doing this (stage IV) for nearly 9 years with an on again, off again success rate and thankfully, am still here and very much alive and kicking. However, I have not managed to kick this crappy disease out of the ole' ballpark yet and really need to do so.
So it seems that I am once again back to the drawing board and looking for what might be next—we have been through plan A, B, C, D (and then some)….and need a new one so I am hoping some of your keen minds may have some insight to throw at it. I have been doing this (stage IV) for nearly 9 years with an on again, off again success rate and thankfully, am still here and very much alive and kicking. However, I have not managed to kick this crappy disease out of the ole' ballpark yet and really need to do so.
I have done bio-chemo, years of IL-2 maintenance, more surgeries than I have fingers, a PLX trial and Ip bui; I started this battle with lung/bone mets and plenty of other sub q bumps but have managed to whittle it down to pesky lumps that keep appearing either in nodes or muscles, arms/torso/axila. I completed Ipi in Aug. and it "worked" on a deep pectoral mass that we have been dealing with for awhile but another small focal appeared in a bicep. It was surgically removed and we were hoping all was well but another lesion has appeared in my shoulder—damn. So, now what? We are trying for reinduction with Ipi but it is uncertain that insurace will approve it. Ipi was very easy for me with little to no side effects, and I seemed to have some response so hoping a repeated dose may get my immune system in gear. I have had very strong immune responses to IL-2 so it was thought I may be a good Ipi responder but docs feel that 10 mg. would be a much better situation for my case but clearly isn't available. They are also suggesting a return to PLX as some are having a secondary positive response—I responded the first time, quickly, but had horrific side effects and am not enthusiastic about a repeat performance and don't see it as a path to cure.
Any other trials out there that are encouraging and open to those of us that have been around the treatment block so to speak? Northern California based so looking as local as possible first but open to whatever it takes. Appreciate any input and creative thinking here!
All be well and keep fighting!
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