I am now 4 days past my car-t cell infusion. The toxicities with this treatment are called Cytokine Release Syndrome or CRS, they also call it the "Cytokine Storm." I like that better, it sounds like a ride at a theme park. The Cytokine Storm can be an indicator that the new t-cells are in there doing their thing. However, some people have no signs. I asked every possible question I could think of as to how the side effects relate to results. I'm an over-achiever like that. The side effects include fever, low blood pressure, neurological difficulties, and a few others. If I run a consistent fever above a certain threshold I will be admitted to the hospital to rule out infection. If any of the side effects are extreme it's the hospital. I don't like spending time in the hospital, but my reaction was sign me up. Get me a room, I'll take a few days with a side of cancer curing.
Imagine my disappointment when I had no fever. My reaction was to take my temp again a few dozen times. No fever. Day 2 I had some dizziness. I was thrilled...but I wanted that fever. Yesterday I noticed a barely perceptible heat. It crept up. My temperature, like my blood pressure, already runs low normal. For me, I was over 1.5 degrees above my normal, and --best of all-- officially I had a fever. It lasted at least 5 hours, long enough for me to start feeling sick.
As I sit here, thermometer in mouth again, I'd like to say thank you t-cells! You be good to me, and I'll be good to you. Alas, I'm back to normal.
It seems like I have so much going on and yet it's almost embarrassingly easy. The clinic was running on a skeleton crew today for the holiday, my research kit was misplaced. One diligent tech would not let it go, when everyone else--including me--was going to give up. I think she literally questioned every single person in the lab and finally found the paperwork for my research kit blood work. I'm glad, and yet I wonder how many T-cells they just took out in that extra 5 vials, 2 jumbo size.
I met another car-t patient today and we talked for almost 2 hours. When I say met, I mean I had a gut feeling, chased them to the elevator and asked if they were also a car-t patient. YES! When they started speaking tech to me, including nearly the exact same diagnosis I was beyond excited. It was very, very exciting for me to compare notes and experiences so far.
This video linked below has been brought to my attention by 2 different people, and I am honestly thrilled that the word "cure" is beginning to be used more by doctors. When I was diagnosed years ago, I was told this was incurable. A year later, I remember nearly whispering to my oncologist "they say they can cure this at MD Anderson..." The word cure is used very sparingly when it comes to cancer. We really are at the edge of an entire new era of treatment. It is encouraging to hear the doctor in this video say cure as opposed to turning cancer into a chronic or manageable condition. That isn't terrible, clearly it beats many treatment options even now, but I prefer CURE. This isn't just for blood cancers, they're talking about many types.
Cure is on the horizon
It's only half an hour until I'm scheduled to get my re-engineered t-cells. The excitement is off the charts. I've had all my research blood labs drawn, been given another once over and Houston, we are ready for lift off. I have my pager, and now just wait to be called to the room for infusion.
One of the lab techs commented how nonchalant the whole thing seems. The small vial of my cells, the half hour it takes. It's no big deal, it's just a cure for cancer.