I’ve had 2 rounds of chemo, and had forgotten much that does to my body. Chills, night sweats, aching joints, more fatigue, loss of appetite; I get something different each day. Ugh.
Day +304: Wow, long time between updates. Here’s what’s happened: the first attempt at growing CAR T-cells failed. They had me out to do the process a second time; that failed. So the UNC clinical trial is not an option.
Day +242: Nothing much happening these days as far as my Hodgkins. We’re in the waiting period between harvesting my T cells and getting the ‘supercharged’ CAR-T cells infused back into me. Some pain in my right hip, not sure the cause. Fatigue is the one constant.
Day +213: Drove out to UNC Wednesday to meet the clinical trial team. Long day, but worthwhile. I get my T cells extracted on Monday through apheresis, which is like dialysis. They’ll be ‘supercharged’ and then returned to me as cancer fighting CAR-T cells later this spring.
We got Lutron automated blinds installed this week in our TV room. Apple HomeKit compatible and programmable. Works with Siri.👍 All 6 shades adjusted how I want, with spoken commands.
After the 6-week wait, I’ll receive the cells and must stay there for 3-4 weeks for daily checks (no hospital stay). This is better than radiation because it’s whole-body (systemic) like Hodgkins, whereas the radiation targets only one small spot.
Day +199: By chance, my name just came up on a clinical trial waitlist after 2 years. So instead of radiation, I’ll be getting CAR-T cell treatments through UNC. Two quick trips out there, then a 6-week wait while they “manufacture” the supercharged T cells that fight lymphoma.
Day +189: Feeling really good yesterday & today. They are tapering down 2 of my meds. I was once 31 pills/day, now 7/day. I get a bone biopsy of the spot in my femur Thursday. Will have news about it next week.
Day +182: Got PET scan results. Not “all clear” unfortunately. Found a small spot in my femur, not sure it’s Hodgkins. Will biopsy it next week. I’ll get targeted radiation to eliminate the spot. My oncologist is setting up radiation regimen now — # of treatments, frequency, etc.
Day +181: Had my PET scan this morning. Results tomorrow, and will determine my trajectory. If "all clear", as it was at the 90-day PET scan, the recovery continues and we're all overjoyed. If not...
Day +171: I’ve had abdominal issues for the past 2 weeks Consequently, got a CT scan today and will have more testing next week to determine the cause, and figure out a ‘fix’. I generally feel OK, though fatigue continues daily.
Day +155: Getting my trifusion out today. Very minor procedure. They snip a couple stitches, then literally pull the tubing out from under my skin. Sounds icky; I can feel it when they’re pulling the tubing out, but it’ll be nice to be free of it. No more shower covers! 😁