Wednesday, I went in for my scheduled treatment and went in to get all my labs done before they give you the go ahead to head to infusion. I felt great heading in, just intense nerve pain in my neck. Otherwise just a bit tired. For some reason my port wouldn't give us blood but would flush. I guess this just means the fibers built up like a clot but only blocked one way. This made it so my numbers weren't ready once my doctors appointment started. We talked about things and how the past 3 weeks have been and going forward and then the numbers finally came out. Once they checked my numbers it was obvious something wasn't right and it definitely wasn't right. Turns out my liver was in toxicity. The high/normal that the liver enzymes should be is 40 and 60, mine were 1206 and 1214 (respectively) so I got to be admitted to hotel Huntsman for observation and to get an intense steroid regimen in place and started. They also discontinued all of the meds that had the potential for raising the liver enzymes and one of those is my nerve pain meds. Lets just say I was not happy and the pain started to rise instantly. They did their best to control it but it was finally decided (with a lot of input from me and a doctor friend) that I could have it back. Just missing a day and a half of it really put me behind and I am still catching up. After the first night my numbers began to trend in the right direction, ~700 and ~1100. They needed to keep me to make sure they were continuing to trend down - Which they did and I was home Friday afternoon. Like I said I didn't have any real symptoms or pain from my liver, just from my neck.
Because I reached toxicity (considered auto-immune hepatitis) I am no longer allowed to continue on this treatment. I said a bad word and my doctor said to not get upset just yet. His explanation was that he just returned from a major oncology conference where the 5 year data points have been released for this treatment. Following people who dropped out for toxicity, etc vs. people who completed the full treatment regimen, it showed the people who reached toxicity lived an extra 10%. Also we are most likely adding radiation to the mix which will accelerate the response in my neck while the drugs are still in my system. There are still options, we will just have to figure out the best one and where to go from here. Not the end of the line.
I have appointments this week to go over all the next steps and I'll keep you posted on those. For now I am just getting the nerves to calm the crap down and getting used to a very high dose of steroids - hopefully not for long!
Day one - not how I wanted to spend my days!
I was able to leave my room a lot and actually enjoy the view from the floor
New lucky charm
Home was a good goal for the stay!
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