Tag Archives: chimeric antigen receptor

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My worldwide media blitz is coming to an end. I completed a slightly uncomfortable interview with Univision in Bogota, Colombia. Columbia? Colombia? Wherever Bogota is. Uncomfortable because I speak nada of Spanish. Uncomfortable because this was the interview where I began to realize a trend throwing some "gotcha!" question in there like "how much does something like this cost?" I have no idea. I have insurance. That's not to say I didn't have out of pocket costs, of course I do.

My fun takeaways from the TIME interview:

  1. my family also thought that was an unflattering pic and publicly apologized on social media for my sour puss face (time insisted no smiling.)
  2. I was asked for my autograph! Hilarious.
  3. I won a $50 bet because not a single person ever recognized me after what some family members REALLY believed was going to be a huge recognizable thing. REALLY happy to win that.
  4. This is the BIG one. I did NOT NOT NOT have high dose chemo to prep for CAR-T! I don't know how or why there was confusion over that, but it's wrong!

I was asked how I wasn't ANGRY. Repeatedly during interviews I hear the term "guinea pig." I'm not going to get on a soap box on how "angry" that phrase makes me. I guess that's one way to look at it, maybe it never occurred to me because I've never felt like I'm living a practice life. This isn't my dress rehearsal. I've been my own guinea pig my whole life.

I did a local newspaper interview which the AP picked up...my grandma totes that around and tells anyone who will listen that the Fred Hutch drs are the "new specialists" in my little burg. No Grandma, not quite.

I will apologize for being so generic, but my own personal results continue to be ridiculously normal. I don't know the status of every patient in the study but I know I'm not the only one who has had continued complete success. It makes me so happy!

If you're just joining me, this blog is pertaining to my participation in a CAR-T immunotherapy clinical trial. CAR=Chimeric Antigen Receptor. T=T cells. The re-engineered t-cells target malignant (and non malignant) cancerous b-cells of my non-hodgkin lymphoma.

The light rail goes all the way to UW now!

Gratuitous pretty Seattle shot. This city really is great.
Gratuitous Seattle shot I took on my last visit a few weeks ago. This city really is great.

For me the bigger news than my PICC line is that it is a mere 7 days, ONE WEEK until I get my new t-cells. That is pretty unbelievable. All over town people are bemoaning the heat, which is right now 84º. Back at home, it's already over 100º.

For me, it was PICC line day and a temporary respite from hopping from hotel room to room.  The nurses who  took care of me during the procedure were top notch. My new PICC line will be put through the paces tomorrow during a lengthy infusion session at the clinic. Only one day of my chemo is this time consuming. As I mentioned, the 4 days of chemotherapy will suppress my existing t-cells so the re-engineered t-cells have more room to come in and take over.

Daily I have to try to keep in check that I am at the beginning of this treatment. There are not many people ahead of mecart19 blog (4 of 1). Today I did hear of a patient ahead of me, and it is totally humbling. If you don't have time to watch the video, here are the cliff notes. First adult patient to get cart19, was given a less than 5% chance of survival, is also an oncologist, AND is now in remission. It's a short video and for me was a tear-jerker. Thank you Dr. Eaton! And thank you to the doctors who treated him. He is careful not to use the word "cure" as many doctors are.

<--that's me showing off my new hardware.

Nerd alert: One thing that I have been pondering is the response time of this treatment, and how long my new t-cells will stick around in my system. The response is typically swift. Sometimes the t-cells stay and circulate in the bloodstream. For some, they do their work and then check out. I will have blood work regularly to see if they are still hanging around. If the number of t-cells starts to drop or disappears completely, doctors worry that I will be at risk of relapse. My type of lymphoma is a b-cell cancer and the t-cells will wipe out my b-cells pretty much completely provided they do their job. That also means I will be at an increased risk of infection. The tried & true method of "curing" my cancer up until this point is an allogenic stem cell transplant, but that's a post for another day. We've (me & many doctors) have talked about it and I'm lucky enough that it is an option for me should I need it. One step at a time though.

cart19 blog (5 of 1)cart19 blog (6 of 1)