Part Eleven: In front of the eight ball

So, it’s been a ridiculously long time since I posted and for that, I am sorry. I meant to update in May as a one-year anniversary of my first round of treatment and I was still slogging through some side effects. If you remember from the last time, I posted about my third round of treatment being a doozy. It was, and maybe, still is. Let me explain.

The double whammy

In November of 2016, I switched from Sandostatin to Lanreotide as part of my monthly treatment. Since Sando had slowed down effectiveness for me, my team thought Lanreotide was the way to go. Unfortunately, it went badly. First, I got massive welts from the injection site that were not just “bad injections.” They were literally as large as a softball and itched like hellfire. It would take two weeks for them to dissipate. Also, my flushing was extremely severe. I began to realize it was more of a systemic allergic reaction than flushing. In any case, I took Lanreotide for four months and then switched back to Sando. Guess what? No more welts, no more flushing symptoms. Oh well, I tried. It was the first part that set me back in my post-treatment recovery.

The second part was a resurgence of neuropathy. Back in 2013, I did a round with Afinitor. It went poorly. Many people benefit from this drug and I hoped I would be one, but, I reacted terribly to it. One of the long-term results of it was a nasty case of neuropathy. It flared up badly the summer of 2013, and subsided until my next surgery in 2015. It lasted for about six months and seemed to mellow out. So, my neuropathy was more of a side effect of Afinitor, and ebbs and flows throughout my treatments.

After round three of PRRT, neuropathy reared its ugly head, again. I guess I shouldn’t have been surprised. My hands and feets would be flaming hot at night. It was so uncomfortable, I wished I could peel my skin off. It kept me from getting a decent night’s rest. I felt like I was on fire…even in January. I finally resorted to trying medications for it.

What worked for my neuropathy treatment

My doctor placed me on Cymbalta and gabapentin to help treat it. While it helped bat back the neuropathy, it also made me extremely fatigued. I felt like I was persistently underwater, just barely able to come to the surface for oxygen. After scaling back and moving my meds around, I was finally able to strike on a combination that works for me. I now take gabapentin in the evening and a very low dose of Ritalin in the morning and mid-day to help with my fatigue. It’s made a world of difference for me. So much so, that I have just restarted going back to work at a 40 hour week again. It’s been 21 months since my last surgery and my round of PRRT last year since I have worked full days. Hopefully, this will continue to work for me.

In terms of the actual PRRT treatment, I think I am doing well. Last January, I had an MRI in Iowa City that showed that my largest tumor was showing shrinkage to about half of its size pre-PRRT treatment. Many of my smaller lesions were not seen. PRRT will still make changes for up to a year after the last round, so, I anticipate shrinkage (or at least stability) will still be the trend for me.

In August, I go to Iowa City again for follow up with doctors O’Dorisio and Howe. My local oncologist, John Seng has been amazing through this whole process, working closely with Iowa and Switzerland. My palliative doctor, at Virginia Piper Cancer Institute, Kathleen Regan, has been great to help me manage pain and fatigue and works closely with Dr. Seng.  I really couldn’t ask for a better team.

Go Northwest, young lady

I like each of my posts to reflect the reality of my disease and the fact that while sometimes it sucks, I live a full, oftentimes fun, and complete life. Every day as soon as my feet hit the floor, I am constructing the best life I can for myself. In June, Mom and I took a vacation. Mom had that plane ticket for Switzerland that she wasn’t able to use from last year when she hurt her back, then, her knee. (Coincidentally, she is undergoing a full knee replacement this week.) Anyhow, we visited Alaska for summer solstice. It was breathtakingly beautiful, and so nice to just go on a trip somewhere that was not for medical reasons. So, rather that wax poetically about Alaska, because, believe me, I could, I will leave you with a few photos to inspire you to keep engaged in your own journey with NETS. While it is massively important to be your own advocate and follow your instincts, it is also important to just live! I will post more next month after my visit to Iowa City.