After recovering from surgery #3 in September, my list of remaining problems was pretty small and relatively manageable:
- It wasn’t clear if the parathyroidectomy I had in September worked, as my calcium and PTH weren’t that much lower post-op then they were pre-op. It can take awhile for the labs to settle down, though, and it turned out that was the case with me. If there is one thing my body really likes to do, consistently, it is generate unclear and unhelpful labs! But, slowly and surely, both my calcium and PTH kept dropping. Six months post-op, my calcium was 9.4 and my PTH was 38. SUCCESS!!
- I had a weird looking MRI of my sacrum that had elicited a wide range of opinions that someone needed to explain to me and some back pain in the same area. The back problems and pain I will come back and talk about in another post. But the good news is that the weird looking spots on the MRI have now been interpreted as benign. The consensus now appears to be that my chronic pain is coming from some disc degeneration and it might be fixable with the craziest PT I have ever heard of but have nevertheless committed to completing. Given all the crap that has gone on, it is hard to be totally comfortable with waving off any sort of unusual lump or spot on a scan these days, but as you will see in some future posts, I will be able to keep an eye on it anyway, and that makes me a little more comfortable.
- I continue to have “flushing lite” and GI problems that never went away after surgery. As you might recall from earlier posts, I had a thymectomy in June of last year. Prior to the thymectomy, I suffered from non-stop coughing and wheezing, and I frequently had very angry looking flushing, typically with a purple focal point in the middle of my chest and red blotchy flushing up my chest and neck. The flushing started around December 2014 and the coughing starting in February 2015. I had GI problems throughout this period too. It seems I stopped digesting my food around October 2014 and by March 2015, I started having episodes of very watery diarrhea. I luckily was able to see Gandalf and have surgery in June 2015. After surgery, the coughing stopped completely and the angry purple flushing midchest disappeared. What I was left with was a lighter, diffuse flushing and the GI problems.
The rest of this post is about the quest to figure out the rest of the GI problems and flushing. This investigation started in October of 2015. Spoiler alert: we still don’t have an answer, but I do think we are making progress. Gandalf referred me to a GI doctor that he likes and, having seen this doctor now for six months, I can see why. I am going to call him Sherlock Holmes because he strikes me as a careful thinker who really likes mysteries. He has spent much of this time systematically ruling out everything else this could be besides a NET. The reason he is doing so is that he doesn’t want us to get fixated on a NET and ignore other potential explanations for my problems (although in my mind I am screaming OF COURSE IT HAS TO BE A NET!). He is also running NET tests, but NET labs have always come back negative and, frustratingly, continue to do so.
The reason we are not 100% fixated on a NET is because, as you may remember, I had a positive Octreoscan before the thymectomy, I got way better after my thymectomy, but the pathologist didn’t find a tumor in my thymus! This was a very frustrating development, because without positive pathology there was no plan at all for follow-up or treatment for what could very likely be an aggressive type of tumor.
You might be saying to yourself at this point – big deal, you get a red neck and chest and have diarrhea once in awhile. Just go live your life! That’s not debilitating. Just live with it! That’s a reasonable reaction. And I am living my life and living with the symptoms for now. I am lucky – I am not struggling for air, exhausted, or trapped in the bathroom like a lot of patients I know that do have a NET. But this is exactly why I can’t just forget about it. If this is a NET (and I don’t think it can be anything else, given what’s happened so far), then it is going to continue to grow and get worse. Ideally, if we can find it and remove it now, I have a decent shot of catching it before it spreads (or spreads too far).
So far, we have ruled out mast cell disorders, celiac disease, Crohn’s, IBS, you name it. And we figured out something interesting. Pre-thymectomy, I discovered (through a patient support group for NET patients on Facebook!) that antihistamines helped control carcinoid syndrome symptoms for some patients. So I tried it and it worked! If I took histamine, I stopped coughing and wheezing could have a decent day. After my thymectomy, I stopped taking the anti-histamines, as I figured I didn’t need them anymore. In January 2016, Sherlock Holmes asked me to start taking H1 and H2 blockers daily to see whether they would help eliminate my remaining symptoms. And to my surprise, over the course of the next six weeks, my GI symptoms slowed down and then disappeared! Completely! I hadn’t seen things look this normal in 18 months and was amazed. I was still flushing, but it wasn’t getting any worse at least. But the GI stuff completely resolved.
Then the meds stopped working.