Hey all! I can't believe it's been so long since I updated this!! Sorry!!! Since quite a bit of time has gone by, I'll try to give you the abridged version. My last post left off before my second biopsy. I had that done, and it confirmed the relapse. The plan was to start treatment again, going back on Nivolumab since it worked pretty well before. They were also going to add Brentuximab back in again because the combo of the two drugs has been showing promise. I previously had Brent after my stem cell transplant back in 2015. It was also decided that since I was on Nivo for a year last time, that they would keep me on it for longer this time in hopes of a longer period of decreased activity. I had the first treatment done of both drugs in August with no issues. Nivo is given once a month, and Brent every 3 weeks, so my second treatment was just Brent. Well... apparently my body decided that it no longer likes that drug, because 15 minutes into my 30 minute infusion I started having difficulty breathing. My O2 SATs dropped down to 85, and I was put on oxygen and pumped full of benadryl and steroids. After talking to my doctor, we decided to try it again three weeks later, but with premeds on board to help prevent a reaction. Yeah... that didn't work, LOL. The exact same thing happened halfway though my infusion again, so as of that appointment I was told that we were just going to continue the Nivolumab on its own. I had a PET scan in Nov to assess how the cancer was responding to treatment, and for the first time that I can recall I had Complete Response (CR) to treatment. No activity was detected at all!! I'm not sure if it was the brief combo of the two drugs that did it or what, but woo-hoo!
I have continued with the Nivo once a month since then. The plan was to do a repeat scan in three months to see if things still looked good, and if they did then we were going to start scanning every six months instead of three. So... I just had a scan a couple of weeks ago and to my amazement, it's still clean! So I'm just going to keep trucking along getting my infusion once a month until we decide that it's been long enough, and hopefully things will remain quiet. Thanks again to everyone for your continued thoughts, well wishes and prayers. Sorry it's taken me forever to update... apparently life gets in the way sometimes! XOXO
