Tag Archives: car-t

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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.

 

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Like most cancer patients, scan time is anxiety-ridden. I've tried to explain it to my family that it's like visiting a probation officer every 3/6/9 months...whenever it is...to learn my fate. For example, I'd love to plan a vacation, but will I be having treatment? I'd love to adopt a dog...but if I'm spending large chunks of time away from home, who will care for him? Sometimes thoughts are more morbid. Should I buy this sundress? Will I live to wear it? When I was originally diagnosed, I received some excellent advice from a doctor. Live in the moment. Take it a day at a time. At the time, I thought "save that hallmark card crap for someone else, buddy." It took months for it to sink in. During a time of treatment, it's sometimes difficult to find solace in one day at a time, when days are filled with doctor appoints, blood draws and all the unpleasantries to which a cancer patient is subjected. More often I think "these people are working to save my life."

Thankfully for most people, these aren't thoughts that are considered daily. I was one of those people, even after my cancer diagnosis. I had a lengthy remission during which I happily adopted 2 dogs and took many vacations and purchased many sundresses! This morning before my scan, I did a body inventory. Despite being too nervous to get much sleep last night, I felt pretty good. I reminded myself that I DO feel good. No matter what the results are, I feel okay and I'll feel okay tomorrow too.

Since I am participating in a clinical trial, my scan was done in a new-to-me location. The procedure is the same, but the techs were different. I gave up trying to read the faces of my usual crew for clues or asking them to tell me the results (they won't) a long time ago. Until today, I couldn't help myself. I had schmoozed the tech or so I thought. Tried to be as charming and irresistible as possible. Casually ask "so how did it look?" which got "it takes awhile to process." Slippery. I said "So you can tell me as I leave?"

"I can't tell you anything. When do you see your doctor?"

I've had a complete response. 100% no metabolic activity. That IS my fight song, take back my life song. Prove I'm alright song. There have been many tears of joy today. My heart is full of gratitude.

 

 

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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

 

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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.

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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)