I went to New Orleans for my regular 6 month check up with Dr. W. Here’s what happened there:
- I’m flushing a lot more than I thought. When we started talking I felt what I always wrote off as a blush, but he said it spread all the way down my chest which makes it a flush. He noted to the nurse who came in right after that it was a classic presentation of flushing how it spread and that while it’s commonly thought that carcinoid syndrome only happens with liver mets, that mets to the peritoneum (which I’ve had) can go systemic as well and cause symptoms. Since my serotonin levels are okay he thinks it may be histamine driven so we’re going to experiment with Pepcid and Benedryl to see if that helps.
- I’ve lost so much weight the system flagged me. My BMI is 18.8 and they consider 18.5 to be malnourished. I also have some reactive hypoglycemia going on so I need to be on a strict eating regime to gain some weight.
- Need to start Lanreotide (newer injection replacing Sandostatin/octreotide injection). At least it’s only every 4 weeks instead of 2 this time. Given my scans and symptoms he wants to see me in 3 months this time.
- It happened. I made it home (late) the same day too! This was probably the best my pain and nausea have been managed, but it came with some other side effects like dilated and blurry vision for a couple of days. I apologize to anyone I didn’t get back to… it’s probably because I couldn’t read. They removed my ovary and tube mostly laparoscopically… the main port ended up bigger than usual. These incisions are higher than some of my others which seems to help me not have as much pain walking.
- Good news – I haven’t had the shooting pain and tingling in my leg. It looks like the theory of this being the cause of the pain is holding water.
- Surgery was a week ago today and I saw the nurse today. I have a nice infection going on in my main incision that’s getting worse despite starting some heavy antibiotics over the weekend. I started a new one that leaves fun GI side effects for weeks to months after finishing the course. Hopefully it shows improvement by Thursday morning because I don’t want to find out what the next step is and F-bomb’s birthday party is Saturday!
- Pathology report is in. What was showing on scans was actually two benign cysts on my ovary. They also found some smaller neuroendocrine tumors on the paratubal soft tissue (the soft tissue that keeps the fallopian tube in place… don’t quote me on that though).
So my gut was right – the zebra’s back.