Ned Henry February 4, 2021 · nedhenry.medium.com
It’s 2 PM — In an hour I have a zoom meeting with the oncologist. Still need to do some prep, really just organizing my thoughts. It’s a pretty important meeting about my treatment. This drug, Vincristine, is the one I am reactingVincristineVincristine, also known as leurocristine and marketed under the brand name Oncovin among others, is a chemotherapy…en.wikipedia.org
to pretty severely. It’s an important part of R-CHOP. Not sure what Dr. Allen is going to say today. Got a lot done this morning. Well alot considering I can’t move. Got a load of laundry in and made a batch of smoothies that will last a few days. Took a long shower Clean clothes and all that. Simple things take a lot longer when you can’t walk with out a cane and everything is just so slow.
Here’s today’s selfie. I must admit I’m not looking too good. This Vincristine is really taking a toll. I’m numb, I hurt, I can’t walk and balance. Not sure where we go from here. I want to explore cellular therapies with the Oncologist, but I’m not sure Winship is doing an cellular therapies for DLBCL. We’ll see. Gotta go prep for this call. More later.
3:15 PM — Call with Doctor Allen Notes:
Dropping Vincristine from chemo. Will reduce efficacy of treatment a little bit but Vincristine is the least important R-CHOP drug. Reducing it instead of eliminating it creates a possibility of long term disability. As it is, I need to improve to eliminate that possibility of long term disability. I run that risk now if I don’t improve with the neuropathy therapies I am on.
Neuropathy treatment — Continue with Lyrica and Gabapentin. Monitor for a week, look for improvement and adjust treatment as needed with Cymbalta or other pharmaceuticals.
Cellular therapy is not an option at this point. If R-CHOP fails to cure the cancer after 6 cycles, then I would move to CAR-T cellular therapy. It is not FDA approved outside of some small trials where is is given after 2 rounds of R-CHOP. Not an option for me to join these trials at this point and Winship is not a place these trials are being done.
Access to Dr. Allen. As simple as asking to speak with her on the portal. Dr. Allen with follow up with Priya to find out why my neuropathy problem was not escalated and instead went to Palliative care instead to Dr. Allen.
ACIM — Lesson — God is in everything I see.
9 PM — Look what David found in an old box. Thanks for sending it to me. This is Jane, David and me at Karme Choling. Great experience and one that changed everything related to money for me. I forgot we wore ties to that last banquet. I sure look better here than I do in the photo from today. Also got a book today from Rich Harris. Testimony by Robbie Robertson.
10:30 PM — Not sure what to say. My foot is numb and my legs hurt. I don’t know where all this is going. Glad that Vincristine is no longer part of my future. Concerned about the neuropathy I am experiencing. Work on chronic pain. That’s all for today. I’m tired.