Sorry for my absence. Been thinking about you all a lot. It's been a pretty busy month... a lot has happened. I'm not sure where I left off but here's an update...
Well,exactly one month ago I had my CT scan and two days later I found out that IL-2 was unfortunately not my magic bullet. But, I like to think that since it didn't work on me, I've raised the odds for it working on someone else. So that's good. They did say I may have partially responded due to the slight softness and shrinking I felt on my chest and back, but those ones don't really matter and it's not enough to call for another round. So.. since then...
During that appointment, my doctor had mentioned "adoptive cell therapy" clinical trials, a therapy they offer in Bethesda MD at the National Institute of Health to qualified patients, it was actually the first thing he mentioned months ago but I didn't qualify because my brain lesion, but since then, that's been cleared up, and with 3 months of clear brain MRI (which they require), I might be a good candidate. So him and I made some calls, set up an appointment, and I flew to Washington DC. I got to the NIH, went through security, checked in, got my badge, did all my necessary blood work, urinalysis, chest scan, EKG, all the loops and hoops over the course of the day, and finally met with my possible team of doctors. I was supposed to go home and they'd call me in a week to see if they'd even accept me, but, miraculously, they accepted me then and there, and asked me to stay two extra nights to do a surgery and remove the mass from my back. The next day they wheeled me to the OR, put me to sleep, and I woke up feeling great having that thing off my back. Finally.
By the way, a brief summary of adoptive cell therapy: They remove a tumor or piece of a tumor to extract some natural t-killer cells from it. Then in a lab they see if they can harvest the cells. Usually they can, sometimes they can't. If they see they're growing, they continue to harvest, possibly for many weeks, until they have about 6 billion of them. Then there's a three week procedure where they give them back to you. And then you wait, hope and pray that these t-cells are abundant enough, strong enough and smart enough to recognize the bad stuff and go to town on it.
So back to the update. Less than two weeks after the surgery they called me to tell me that cells were growing. Big relief because if they don't grow.. well then there's no cells. They said they'd call when there were enough for me to come back. And again, miraculously, I got a call two days later saying that my cells are growing phenomely fast (faster than they'd ever seen.) and that looks like I'll be starting the therapy a lot sooner then expected. So I flew back out the next day for prep work, another brain MRI an abdomen MRI and a CT scan of my chest along with more blood work and a long morning of phresis where they took a bunch of white blood cells for 4 hours. Then I flew home with an appointment to come back this Sunday/Monday and start my 3 week therapy on Tuesday.
Tuesday, unfortunately will consist of me starting a week of traditional chemo, not to target the tumors but to kill my immune system, they want it gone so it doesn't effect or "water down" my new immune system. Then on the second Tuesday, they give me my cells back with a week of IL-2, just like IL-2, one bag every 8 hours as long as tolerable. Then the third week is recovery week, getting me back to normal so hopefully I can be home before Christmas. Then as I said, I just wait hope and pray until they call me back and scan me.
So that's that. It's been a long and busy month.
I'll have to browse the past posts and see how you all are doing, but I Hope everyone is doing good, staying positive and enjoying the day off today, hopefully with some good company.
Talk to you soon. -Kevin