Morning appointment with a Dr. Tolga Tuncer—my new neuro-oncologist called himself a medical oncologist—left with a few new bits to chew on and ruminate here in the snow bright afternoon naps of the house hour. The scrapes of shovels next door sounded close as my own yard. Also, I’m watching for another box of Temodar after missing my first dose last night since I started back up in November due to some kind of human error, not mine!
For the first time in talking with Dr. Tuncer the recurrence/necrosis dichotomy collapsed into a possible, most likely combination between the two, which occurred over summer 2021, beginning as early as May when I first reported the symptom, an increasing deficit that’s left me with little to no function in my left hand. The shift that occurred is too little to be significantly (defined as an increase of 25%?) registered on MRI scans. The radiologists reading the scans have thus continued to speak in terms of “evolving post-treatment effect,” which seems more in keeping with Dr. Salacz’ end-of-2020 sense of this being radiation necrosis. After his move to New Jersey, he told me over the phone, however, we should expect to see that flare up and die down after a couple months, though he had seen it flare up over 22 years after initial treatment.
With that laid to rest and no improvement in my left hand, Dr. Tuncer agreed I am facing a permanent loss that no amount of Temodar is going to help with. He did, however, refer me to an occupational therapist in hopes of slowing down the muscle atrophy all along my left side: Noticed a clavicle popping out a couple weeks back, and the flab has been progressive, a stark right-left contrast in muscle tone. Mom thinks a back brace might help to straighten and uphold a spine that is after all constantly twisting and following the right hand as it reaches for things.
Long-term, Dr. Tuncer also holds that Temodar will not be a viable option, despite Dr. Abbasi’s having seen patients on it for years. Because Temodar depletes bone marrow, Tuncer would want to cap it off at two years max and corrected me for calling 100 mg a low dose. My neutrophils are already registering a hit, though not yet as cause for concern. Ultimately game plan will have to adapt as I make my way down the field. (And now I’m all out of breath on the inside, so I’d better go grab a nap while the getting’s good).