Tag Archives: cart19

October--I'll backtrack a few months. I had another PET/CT scan which was totally negative, and also not a single detectable b-cell* in my lab work. My cancer killing cells are still working. It's a fantastic, couldn't-be-better report.  I was upgraded to NOT getting a PET scan every 3 months. Yay! Having scans so frequently is not great, because of repeated exposure to radiation. My doctors are very cognizant of trying to avoid it if possible. IF POSSIBLE. I'm sure by now I am well over the recommended lifetime exposure to scans, but the alternative is kind of the same. No bueno, it is what it is.

January. I'm flying for my appt. because who knows if the roads will be open. The flights from where I'm at to Seattle have been canceled. The airport is an hour away. 3am I'm up to go catch that flight. But who am I kidding, because I'm going to go have some tests done, basically learn my fate, so there was no sleeping anyway. As my husband is driving me to the airport, our vehicle malfunctions? I'd say breaks down, but this is a newer car that starts acting squirrely displaying all kinds of error messages. Return home for MY car--and let's just say I'm not very sensible for highway driving vehicles. I tend toward very small, impractical things with removable tops. It was an EXTREMELY COLD and slow trip. We were almost out of gas but there was NO TIME to stop. Somehow the plane arrives an hour late. Uber to the clinic, no idea how late I was for my 1st appt. This kind of thing stresses me to no end.

I wait for-ev-er for the appt. with the Dr. Somewhere in there I creep to the desk to see if maybe...perchance...there is an earlier gap in the schedule. There's a chance. I arrive 30 minutes before the gap and they take my right back for my vitals! 2 hours early, I'm elated and shocked! Then I'm sent back out to wait...my regular time rolls around and I'm summoned, then told don't worry, he's only running "a little" late. I'm the last spot of the day. Everyone is coating up & heading out. I'm worried I will miss my flight back. I insist on leaving the room door OPEN so I can glare at anyone who passes. Brush my hair, listen to show tunes, try not to have a meltdown and pace the room. Mentally recite the poem "If" by Rudyard Kipling, specifically dealing with Triumph and Disaster. I give myself a mental deadline to make it to the airport at boarding time. It comes & goes. Ask random person in the hall...how can I get there in rush hour traffic? Mentally calculate cost of missed flight vs. uber or taxi.

My appt is great. Everything is GREAT. I suspect that everything that has gone wrong was just so I could savor how sweet good news is. I've been feeling fantastic, and now even the scan is optional. As always, I inquire generally about the rest of the study. Progress? How are other patients doing? What a difficult, roller coaster job that must be. My doctor is thrilled with the successes, but I can see the turmoil over the patients who weren't a home run. He is so determined to unravel this process and improve it. It is a puzzle that has some of the most brilliant minds working on it. It overwhelms me still. There is no end to my gratitude to these medical professionals. I want to hug all the staff I know as I leave, but I don't.  The mental tab for my Uber to the airport doesn't phase me. I wait in the rain for a lost Uber driver who can't find the clinic and is not happy to go to the airport in rush hour.

I make it on time! The Uber driver is my hero! I give him a tip equal to the fare! Life is still great! Straight to security I realize my drivers license is nowhere on me. I lost it at the OTHER airport that morning. Meltdown Level 5 is approaching, but I meet with a TSA VIP and every document I have that identifies me and get through. Naturally the plane is late, my joy is unphased. Email from Uber...my driver isn't paid because my card is declined. Suspicious of fraud, my bank has protected me but marred my reputation as a decent Uber user. I refuse to get upset.

Broken down car. Lost my license (the thought of that ugly ass mugshot floating around annoys me, along with my info!). Still in the running for fantastic day award.

*b-cells are a natural part of the immune system. my cancer is a b-cell cancer. the treatment targeted ALL b-cells successfully, so part of my immune system is now missing.

 

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)

cart19 cure

A brief history:
Last week I arrived, officially for my participation in cart19. This treatment is so new and evolving rapidly so the forms I had signed a few months ago were no longer up to date. I had a meet and greet with everyone involved and even got a status update on how my t-cells are doing in the lab. They're doing great, thanks for asking. I will be having 1/3 less chemo, yay! I will be having significantly less t-cells also...hmmmm. Yay? The chemo is to suppress my existing immune system so my new fangled genetically engineered cancer killing t-cells can get in there and get to work!

Did I mention this is a clinical trial?! I can not cruise into Walgreens and buy some new t-cells. This is an experimental therapy. I want to make it clear that I'm not condoning or encouraging anyone to use my info as medical advice.

There is a fair amount of prep work that goes into this. My one week schedule of appointments is 7 pages long. I had my own t-cells collected months ago. Things like a CT scan, bone marrow biopsy, echocardiogram, etc are all needed to get a baseline. That good old bone marrow biopsy. Now, if you're reading this, you probably are familiar with the joy of one, or have at least heard about it. For some reason, I detest the bone marrow biopsy. I am enthusiastic about this trial though, and if that's what it takes, then sign me up! By sign me up, I mean I hesitantly agreed and then made 3 phone calls trying to plead my case to not have it done. Unsuccessfully.

Yesterday I had my first ever heart echo, which conjured up visions in my head of dye, wires, maybe lying on my back on a cold table. Wait, that may have been a movie about alien abductions. I'm happy to report it's actually nothing more than an ultrasound of the heart.

bee (1 of 1)One day closer.