Information kept coming in following our last Mayo visit. I’ve mentioned that I’m participating in a study that’s looking at the contrast solution used in PET scans in hopes of clearer detection of hepatocellular carcinoma (HCC), aka liver cancer. The PET scans involve being injected with a radioactive solution that the cancer sucks up, which “light up” when scanned. It’s a beefed up CT scan. I think. Since it’s a study, I don’t get any results of these scans in my patient portal, but the doctor who is overseeing the study sends me a message with some general thoughts. (Strangely, all of the images from the PET scan appear in my portal, but since it looks like a Rorschach flip book, it’s not useful to me.)
To recap, the scans at my last Mayo visit were following my first three cycles of immunotherapy infusions, and the take away was that I have no new lesions, but the known lesions in my peritoneum have increased in size, and there’s a lesion in my lung that I need biopsied, as it has also increased in size. “Oh.”
My Mayo oncologist Dr. Lionel talked about the possibility of “pseudoprogression,” which could make it look like the lesions had grown, when in fact they haven’t; Dr. Tran, who is overseeing the study, wrote to say that basically what was shown as growth on the CT scan was not lighting up on the PET scan, so she agrees with the pseudoprogression idea. I asked her if that lung nodule lit up; she said it had not. We’ll see what the biopsy shows, but this new information sounded a little more positive.
The PET scan study is testing how hepatocellular carcinoma responds to the radioactive tracer used in the detection of prostate cancer. I definitely feel like I’m participating in – and benefiting from – pretty incredible advances in cancer treatment.
I was referred to an integrative medicine doctor in the oncology department at Mayo. She advises on things like nutrition, stress mitigation, and alternative therapies. She’s a big proponent of mindful meditation. I explained that I really like Vicodin. She signed me up for an intro to mindfulness webinar, and did not give me Vicodin. She also sent me links to open and upcoming trials looking at psilocybin (magic mushrooms) and also MDMA (Ecstasy). There is increasing interest in how psychedelic drugs, combined with psychotherapy, can actually re-write neuropathways and improve PTSD, stress, despair, trauma, etc. Bob was particularly interested in an MDMA trial that administers the drug to both the cancer patient and the caregiver.
Mayo scheduled my intro to mindfulness webinar during a time that conflicted with my next immunotherapy infusion, but I kept the appointment, predicting that I’d be well settled and just sitting around absorbing drugs by that time. It would have worked perfectly, if my veins cooperated. I also thought the webinar would entail passive participation. Nope! At the time I needed to log in to the webinar, there were two nurses working on my arms, wrapping them in hot towels, trying to get a vein to pop up. Something would look good, then disappear, or would pull blood, but the saline injection test would make the tissue bubble up – fail. The webinar was full participation – it was the instructor, one other patient, and me. Breathing exercises while I was repeatedly stuck with needles. It was a circus.
I still have no side effects from the infusions – just lingering bruises on my hands and arms from the IV attempts. We headed to Washington DC the next day for a conference. Coming home today, we departed the plane and stopped in the restroom. When we were almost to the Uber pick up area, a woman walked up beside me, saying, “I don’t want to touch you, but your dress in all bunched up in the back.” Perfect. Just kind of wedged up in my leggings. Bob said, in his defense, that he had been walking in front of me the whole time, so couldn’t see the problem. It wasn’t actual bare ass, but not ideal.