Progress Report

February 11, 2019 By

Dear All:

Here’s the latest news keeping you up to date on my quest to cure my terminal cancer. Saturday, I returned home from a quick trip to San Diego where I received the second of three injections (spaced three weeks apart) of a personalized neoantigen cancer vaccine. My first injection was on January 15th, my second was on February 8th, and my final inoculation is scheduled for March 4th. We won’t really know anything about the effect of the treatment until late March, following my next PET/CT scan in San Diego. At that point, we should find out what’s going on with my cancer… Is it regressing, staying the same, or spreading/growing? Even then, we won’t really know how effective the vaccine is, since it can take up to 12 weeks from the initial injection for there to be any measurable effect. That varies a great deal from individual to individual.

Unfortunately, when I returned home from my first injection in January, I came down with a case of bronchitis. The bronchial infection could have arisen from damage done to my lung tissue when I slipped on the ice here in Vermont a few days before leaving on my trip. Just like a cartoon of someone slipping on a banana peel, I went straight up in the air and came down flat on my back. I was able to avoid hitting my head, but unfortunately, I wasn’t able to avoid breaking a rib or two. Ouch!

The combination of bronchitis and the broken ribs made sleeping on my left side impossible, which would have been OK, except that several days after receiving the vaccine and getting back home, I also developed what my local oncologist interpreted as bacterial cellulitis at the injection site on my upper right arm. My arm swelled up like a balloon, and became quite painful. The treatment was a course of antibiotics, and until the swelling went down I couldn’t comfortably sleep on either side. I was reduced to fitfully dozing on my back. Actually, there is some uncertainty about whether the arm swelling was truly bacterial cellulitis or an immunological reaction to the peptide vaccine… We can’t be certain, but we’re carefully watching how I respond to the second inoculation, and if the area on my upper left arm that received the injection starts to swell, I’ll restart antibiotics right away. And while it’s too early to tell what is happening on that score, I can say that the second injection has definitely caused an immunological reaction. I immediately came down with mild flu-like symptoms – achy joints and muscles, mild fever, night sweats, and a general crummy feeling. This is probably good news, but again, no one knows for sure…

Overall, I’m encouraged by the course my treatment seems to be taking. First of all, I am incredibly grateful to have made it this far, and to be in such good health generally speaking. I have not had any symptoms of disease since I arrived back from Spain at the beginning of June 2017 – which is amazing! Second, I’m very pleased with my overall strategy and believe the “learn first, fight later” approach suggested by Sun Tzu in “The Art of War” has proved itself to be a wise course of action. The decision to forego additional FOLFOX infusions back in July of 2017 allowed me to discover that Pembrolizumab was effective in holding my cancer at bay. While on Pembro, closely monitoring my disease by regularly tracking my CEA and CA 19-9 blood markers allowed me to discover additional effective responses to disease progression. For example, I was able to see the impact that fasting had on my disease, and I now know that fasting creates a tough environment for my cancer … my blood markers go down when I fast, and I can safely combine fasting with other treatments if needed. The goal has been to learn about as many effective treatments as I can, and to be able to use them in combination when needed. So far, that approach seems to be yielding positive results… I now know with some real confidence that FOLFOX, Pembro, and periodic fasting all have measureable impacts toward reducing my blood markers. I also have learned that they can be safely combined. I view my neoantigen vaccine as another treatment that can be combined with others… I’m now waiting to see how effective it is. But even if it doesn’t have any effect, I have other promising options in the wings, and I feel positive and empowered as a consequence, and much looking forward to what’s ahead. Another sugaring season will be starting up this coming weekend, then Deborah, Mia and I will be journeying back to California for my final inoculation, then a return trip to California late in March – both to take the measure of the vaccine treatment, and to visit old friends in the Bay area – then a two week family vacation in Westport in June with lots of golf, fishing, and extended family fun on the beach! Can’t wait…!!! Thanks for all your continued support and please remember us in your prayers!

image credit: pixabay