So here is a quick update. I received some really good news on Friday—my biopsy results came back showing a specific protein in my liver, which allows for more treatment options. Additionally, my insurance company approved the non FDA approved drugs, so I can finally start treatment! Specifically, Brentuximab vedotin. (Click here for info on this drug: https://en.wikipedia.org/wiki/Brentuximab_vedotin). There have been more successful trials using this drug with advanced stage disease than the Nivolumab drug
(click here for more info on this drug: https://en.wikipedia.org/wiki/Nivolumab)
-so my doctors wanted to start with this one. Memtally, I’m way more hopeful. In a perfect world, this drug could totally work for me, and I could just live the rest of my life having this drug every 3 weeks. I was set to have 2 rounds of this drug, then scan to see where we were at. After the scan, if the tumors were still there or they were worse, we would switch to the Nivolumab drug. Unfortunately, today’s lab visit put a kink in that plan…
My liver enzymes, which were close to normal on Friday when I received the drug, were all elevated today. No good. It doesn’t necessarily mean that the Brentuximab treatment isn’t working, just that it’s not working quickly enough. So, beginning this Thursday and Friday, I will be getting one chemo drug, cytrabine, (click here for more info on this drug: https://en.wikipedia.org/wiki/Cytarabine), with the hope that it will jumpstart the Brentuximab into working. This drug will weaken my immune system, so please stay away if you’re sick, friends and family!
even though I received some not-so-good news today, overall, I’m feeling hopeful for the first time since my relapse, and am in a much better state of mind now that at least there is a plan in place!
Special thank you to everyone for the kind words, dinners, cards etc. Additionally thank you a million times over for those of you who have donated money on our giveforward website. It takes a lot of the stress away for us. We so appreciate it. This time of the year sucks ass for us, but I think there will be some good things on the horizon!!