Possible progress, peripheral neuropathy, pills, and Penn's patient portal

I had fun with using "p" so often but it is all about my last couple of weeks...

I had my 4th R-CHOP treatment a few weeks ago, with a reduced dose of vincristine as am having some numbness in fingertips and bottom of feet, and more recently the left side of my chin and lower lip.  I figured it had to be a branch of the trigeminal nerve, a cranial nerve that was causing the numbness on my face. Dr Porter was not so sure, he checked my other cranial nerves and they were OK and because I had a sore inside my lip where I accidently bit it, he thought it could instead be viral, ie recurrent herpes. But I am on a prophylactic antiviral so that should not happen and I had no real "cold sore" looking lesions on my lip. So once again I seem to get the unusual results, see this excerpt from a medical article on vincristine-induced peripheral neuropathy:

Cranial neuropathy (including extraocular muscles, laryngeal neuropathy, and optic neuropathy) has been reported but is considered rare (Toker et al 2004).

Just like with getting febrile neutropenia despite Neulasta (see older post) only 1% of the time is that seen, based on clinical trial results. Dr.Porter was worried enough about these symptoms that he ordered a brain MRI to rule out lymphomatous meningitis. He doubted that but wanted to be sure and told me not to worry. Ordinarily I would run to my medical texts and online resources and look that up, but I decided this time why make myself crazy, why not wait until you hear the MRI results, which thankfully were negative...

My counts are good post-treatment except for the inevitable neutropenia even with Neulasta shot; at least this go-around I did not have a fever and have to be admitted for IV antibiotics. The node under my left jaw continues to remain small, so the lymphoma/transformation seems to be under control.  I love the patient portal they have at Penn Medicine, you can email your provider, check on appointment times and get your lab results, and it can graph the results over time. Below is a graph of my LDH (which is elevated in Richter's syndrome), showing how  it comes down nicely after treatment but after the last treatment it did go up to 300, normal range at Penn being 98-192. The general trend is down, though, and my highest value was in early March when it was 408.

I posted the following photo on Facebook this week to show how many pills I have to take, not unusual for someone with a chronic disease I guess. I need a lot of supportive medication, mostly for infection prevention.....here are my morning and evening weekly day-by-day pill boxes....I joke that what with the expensive monoclonal antibodies, I am singlehandedly supporting pharma. Some of these are generics thankfully but voriconazole is close to $1000 a month (but "only" $50 copay). I am so grateful to be able to continue to work and to have good health insurance...