Here’s the latest on my cancer adventure.
Highlights
- The problem is, my bile ducts are blocked due to my liver being inflamed.
- Chemo is suspended until I get my key liver marker down to a workable level.
- The solution to that is serious doses of steroids.
It’s been a year since I was diagnosed with metastatic head & neck cancer, met my oncologist Prof Nick Pavlakis, had several CT, Xray and PET scans, biopsies, had my portacath installed, and started my first chemo. I won’t take you through the ups and downs of the past 12 months, just to say that I’m still standing and mostly feeling fine, though my adventure is far from over.
A couple of weeks ago (Aug 6), the day before my scheduled third Paclitaxel chemo cycle was meant to start, the clinic called to say it was off. My blood test from the day before showed a high level of a liver product called bilirubin. (Yes, it’s’ pronounced Billy Ruben but, like all medical terms, it’s Latin: “red bile”.) I took another blood test the following week and the level had jumped dramatically. Clearly no chemo that week either. Plus my skin was starting to go a jaundiced yellow, a sure sign that my liver was in trouble. Nick wanted me in hospital for diagnosis and monitoring, so off we went to Royal North Shore Private Hospital.
Daily tests there showed the bilirubin level continued to rise. The liver produces bilirubin as a result of killing off old red blood cells. It normally passes out of the liver through the bile ducts into the digestive system but my bile ducts were blocked so the bilirubin was escaping into my bloodstream. Very nasty results at high levels, which I was approaching.
Think of the bile ducts as a branching tree, with two big trunks at the exit fed by a bunch of progressively smaller ducts right down to the microscopic level: I’ll call the tiny ones ductlings.
Scans showed that the blockage was happening at the ductling level: nothing was visible involving the larger ducts. Nick initially thought that cancer cells in my liver were compressing the ducts. To his credit, he brought in a gastroenterologist, a liver specialist Dr Neomal Sandanayake (“call me Neems”). He considered other possible reasons for bile duct blockage and started me on a course of steroids. Almost immediately my bilirubin levels began to drop. Neems’ theory is that the immunotherapy I had up until April had caused my immune system to attack and inflame my liver, squeezing the bile ducts[1].
Nick visited the following day, reporting further bilirubin drops. He has seen immunotherapy inflame the liver but he has never seen it appear four months after stopping the therapy. “Is there a paper in this for you?” I asked, partly joking. (He is, after all, Prof Pavlakis.) He grinned. “Of course: ‘A case of delayed onset immunotherapy-induced hepatitis’. The community should know about this.”
So after six nights in hospital with progressively dropping bilirubin levels, I was sent home with a complicated program of meds, including more steroids.
A week later, thanks to the ‘roids, I’m feeling almost normal. Most of my appetite and energy are back, and I no longer have the chills all the time. Of course, steroids are not a long-term solution.
Well this week (Aug 28) was our big consult day with Nick at the clinic and it sure was an eventful one.
The big news is that my bilirubin level, after dropping in hospital, has stayed pretty much stable in spite of my regimen of home steroids -- too high to consider restarting chemo. Meanwhile, Nick had texted his liver specialist colleague (Neems) with the news. Neems was the guy who set up the steroids program in the first place, so Nick is kind of working under his guidance right now.
Within half an hour – we were still at the clinic -- Neems had returned Nick’s text with a new program: higher doses of steroids! So we've been in for two consecutive days for drips of more steroids to supercharge the anti-inflammatory response. And I'll continue taking steroids at home, plus I'll be doubling up on the drug that suppresses my immune system. (It's my immune system that's causing the liver inflammation.) The focus is getting my bilirubin count down to an acceptable level as soon as possible so we can consider my cancer treatment options.
With this fast response to my situation, we headed home much happier. It's one thing to get not-great news and another to get a revised plan to fix it. Let's hope this solves the problem.
Thanks to my renewed vigour I have been able to return to my Sunday evening Marine Rescue Communications Centre shift – at least for the first few busy hours. It’s great to be back in the saddle and it’s a wonderful, supportive organisation.
Once again I am forever grateful that Dianne is in my corner as we navigate the rocks and reefs of this particular voyage.
Thanks to you, too, for all your support. It’s great to hear from you. Please keep sending your positive thoughts.
See you all in my next post. You can read my earlier posts on this page.