This was originally an email written to my family and friends on the date above. I decided to make these public in the event they may be helpful to someone in the future who is embarking on a similar journey to mine.
After a long battle to get into the clinical trial, I finally got my first infusion on Dec 19th. The treatment cycle is a little different than originally planned. I will have an infusion once a week for 2 weeks, then take the 3rd week off. This is preferable to the twice-a-week infusion schedule I was originally slated for.
The first infusion went well. I had a little nausea towards the end of the infusion and experienced a little fatigue in the week after, but overall the side effects seemed pretty manageable.
The schedule for infusion days follows a pretty basic pattern:
1. get blood drawn
2. about an hour later, meet with doctor/PA/nurse to discuss how things are going and make sure there aren’t any red flags in the bloodwork results
3. go for infusion
Step 2 has always been a formality for me – my bloodwork has come back without issues for the last two years. Unfortunately, when I went in for the 2nd infusion on December 26th there was a spike in one of the tests they do to make sure the liver is functioning well. Because of this, I couldn’t get the infusion.
The doctor’s hunch was that this spike was actually due to a blocked bile duct. Apparently this isn’t uncommon and the solution is to insert a stent into the bile duct to open it up. A CT would be taken to confirm the diagnosis before the procedure, then the procedure done, then over the next few days the number would return to normal (and I could get the infusion and get back on schedule with the trial).
That’s where things get complicated. When you’re on a clinical trial you can only stay on the trial while it is being effective for you. Normally a CT scan is done to measure effectiveness 2-3 months from the start of the trial to give the trial drug time to work. If I had a CT scan after just one treatment, it’s very likely that it would show some indication of “progression of disease” (which would force me out of the trial). So we didn’t want to do a CT scan.
Instead, I went in on Monday the 29th for an ultrasound. The tech who was doing the ultrasound and reading the results thought that she saw a blood clot (a portal vein thrombosis) rather than a blocked bile duct – which freaked everyone out. Again we didn’t want to do a CT scan to confirm or disprove the reading because of the clinical trial. Towards the end of the day after a lot of back and forth they decided to send me home with some blood thinners. I went to pick them up and just before I left the pharmacy with them my doctor found me.
He had just come from radiology where he’d asked another tech he trusted to read the ultrasound. This tech did *not* see a blood clot. We decided to skip the blood thinners for the time being and do an MRI of my liver the next day to get a better view of what was going on (but not see so much as to kick me out of the trial). I’d never had an MRI before and I’ll be happy if I never have one again. So loud and claustrophobic. I really struggled with it. Anyway, the MRI confirmed no blood clot and that the stent in the bile duct was the next step.
Unfortunately, this pushed us right up against New Year’s Eve. I didn’t hear from scheduling on the 31st, the 1st was a holiday and when I did hear from them on the 2nd it was too late to get the procedure done that day. I currently have an appointment on the 8th for the stent procedure, but I’m hoping to get that moved up.
Once the stent is installed it will take a few days for that number to come back down, and ultimately that is the gating factor to getting me back on the clinical trial; and I need to get back on the clinical trial ASAP to let the trial drug do its thing. The doctor seems really positive about the trial producing results.
It’s been a frustrating week.
Aside from the trial/medical-related frustration, we had a really nice holiday. I enjoyed visits from friends. My parents visited the week leading up to Christmas and Heather’s parents were in town as well. Caitlin had a blast opening her presents – everything from legos to books to stuffed animals to craft supplies to junior make-up. She’s had two weeks off from school, I think she’ll be excited to go back next week.
For New Year’s Eve we hosted our traditional fondue night with friends. We may have watched the ball drop in a different time zone. I wouldn’t know, I peeled off early.
This post is part of the thread: Cancer – an ongoing story on this site. View the thread timeline for more context on this post.