A full day at UCSF has confirmed my apparent continued good health and NED status. When I asked about another round of scans to get a glimpse inside the mystery that is our body, my oncologist affirmed that he sees no reason to undergo another round of PET and MRI scans. The high radiation is a risk in itself and 2 years 4 months after the end of my last Hyper CVAD round, I remain asymptomatic - no drenching night sweats, no debilitating fatigue, no bone pain, NO vision issues, and NO HEADACHES; I remain highly sensitive to my months of horrific migraine-esque torture. Believe me, if I were ever to get even the slightest twinge along my trigeminal nerve, I would be immediately attentive and have PTSD flashes. So watchful waiting continues.
Today also welcomed another member to my team: Infectious Diseases. I have warm feelings about this specialty since it was VCU Infectious Diseases that actually first raised lymphoma and ordered tests that ultimately led me to diagnosis, pain relief, and successful (to date) treatment. Our current task is focused on shingles. We are trying to weigh continued daily Acyclovir to suppress shingles versus the drug's possible role in elevating my liver enzymes. Do I discontinue Acyclovir and risk the shingles vaccine and its rare but severe side effects? The vaccine would boost my arsenal of ammo in case of a lymphoma relapse. However I could stay on Acyclovir for life on orders of my oncologist and infectious disease specialist and against the recommendation of the liver specialists. Furthermore, can I stop Acyclovir in order to clear my system before receiving the live virus shingles vaccine? Last time we tried that, I broke out in shingles within a few weeks. Three UCSF departments need to weigh in and make a further recommendation. Despite long conversations with me, nothing was resolved today. This debate is up in the air and not set in stone. As for now, I am not jaundiced, popping Acyclovir, and happily shingles- free.
