I had a CT scan last week and things are looking "unremarkable" which is good news. During my follow-up with my oncologist I asked about my tumor testing and lots came out of the conversation. She was hesitant to discuss it.
Basically, my tumor tested negative for the KIT mutation which my oral chemo is targeted to work on. BUT my pathology post-surgery showed "significant drug effectiveness". The doctors are really scratching their heads about this. She was afraid if I knew the result that I would ask to be taken off the oral chemo. She wants to keep me on it forever and it's not like I love taking it, but I'm not willing to risk coming off of it either. She said, "obviously, Gary was very concerned about tumor spillage during the surgery so we just feel it's the best course."
They are considering sending the rest of my tissue sample to NIH to test the SDH mutation. My insurance won't approve the test and so it will be part of study.
Anyway, we also had a long talk about no possibility for having kids in the future. It's something I knew, but still sucks to hear it. My case was so emergent in the beginning that there wasn't even talk about taking eggs and now I've been on this drug that they have no real long term knowledge about. And I'd have to go off the drug to be pregnant and what's the point of having a baby when your cancer might return off the drug and then your baby has no parent? It all SUCKS, but that's life sometimes. Also, I'm not really expecting to get married so the baby thing was pretty far out of reach anyway.
Life, man. . .
Just happy to be alive at this point. . .like the medal that hangs in my bedroom says.