Sorry I haven’t posted anything in over six weeks; I started a new job on 5/26 and I’ve been very busy (but in a good way!) 😉
I joined Dave for his last cycle of CHOP on 5/20. At that time he said he was getting noticeably better each day, not just because he was recovering from his previous cycle, but also because of the choice to remove Rituxan from his protocol. For example, he said he could do three flights of stairs before getting winded, when before it was only one; he also said he could carry two bags of groceries now instead of one and he was able to carry his trash all the way to the dumpsters, a good block away.
He reported normal stool and continued runny nose on his 5/20 visit, and also that the Vincristine-induced neuropathy in his fingertips had gotten bad enough that it was starting to affect his typing; fat-fingering keys and getting a cramp once. I spoke with him yesterday as well, when he reported both the neuropathy and the runny nose were still bothering him, along with some “stickiness” on his skin. For me, it took a few months to recover from the neuropathy, so it’s not unexpected that Dave continues to have symptoms.
Dave completed his pulmonitis-related prednisone Rx recently, tapering down to 20mg over several weeks and then eliminating it entirely, but it took a while for his appetite to drop back down to normal. As a result, his weight is back up in the 190s. There’s been no evidence of adrenal insufficiency. He also reported his hair is starting to grow back, and that in spite of getting another Lupron treatment on 5/20, he had to shave his beard recently. (Come to think of it, that might have been related to the prednisone.)
Back to the 5/20 visit: LDH was 223 so it was continuing to drop (good), anemia was still there, BP was 110/66, heart rate was 85 bpm, pulse oximetry was 96-98, temperature was 98 F, and lungs were clear. He took a lap around the ward, and pulse oximetry only dropped to 95.
Dr. Patel recommended that Dave visit a physiatrist on Cherry Hill for physical therapy, probably to assess and track his neuropathy as much as anything else. He also continued his sulfamethasone therapy.
Dave will be getting a PET this coming Wednesday, July 8th at 6:45 AM. While I’m probably brave enough to join him at that time, I’m not feeling comfortable about taking a full day off work just yet, so instead I’ll just be meeting him for his visit with Dr. Patel later in the morning. Hopefully, preliminary scan results will be in and will have some good news to share.