I met with my oncologist today, who is also the head of the CAR-T study. I've seen him for years now, and he's an amazing human being. As smart as they come but personable and humble. I digress. When I saw him last, my latest blood work for the trial wasn't done yet. The research labs are much more complex than normal blood work and also much more time consuming and costly. Last week though, I was told that these labs were kind of the big ones. Not even kind of, they were. These were the results that would show whether the CAR-T19 cells were going to multiply on their own and circulate in my body instead of just going away.
Today I am thrilled to report that they have multiplied like crazy!
I would be remiss if I didn't clarify that just their mere presence does NOT mean they have wiped out all the cancer. It is possible that they're in there...multiplying like rabbits and taking a nap. Killing no cancer, drinking beer and watching football, who knows. Anything is possible. This was one more step to my success with this treatment though, and my doctor was VERY happy with how well those critters are growing. Yay, t-cells!
One of my new favorite people, maybe one day I can meet this man.
Last but not least, today I also learned that the paperwork is finished for a newer version of this trial starting roughly in 6 months. I think there is already a newer version starting at Memorial Sloan Kettering, and this is NOT the same thing. That trial at MSK is being called "armored CAR." Catchy! I would try to explain it, but chances are I would get too many details wrong so I'll save that for later. Also, I don't think it's a secret since it was shared with yours truly, but it's also not front page news and it's not really mine to share. It sounds very exciting though. The second I come across legitimate information that's released, I will share.
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.
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.
My last day of chemo wrapped up uneventfully. It was "well-tolerated" as the clinic would say. I had some great nurses over the 4 days, and met a patient who I bonded with immediately.
Today was my last clinic visit before my infusion Thursday. They've warned me that it will be anti-climatic even though it's a big deal. In response, I bought deluxe party hats & tiaras for everyone to wear, and it's not negotiable. The team knows they need to be camera ready and my doctor thinks he can escape it.
I'm planning to enjoy my day free of appointments and blood work by being a tourist a little, taking photos, and then going to ikea! Joy!
Halfway through my 4 days of chemo and today was rough. Yesterday was a long day, but today my old friend nausea came to visit and wouldn't leave. It was bad enough that I missed some of medications I'm supposed to take. One of them I knew would make me feel even worse. I can be a worrier, so when my blood work results came back normal I was not happy. This chemo is to suppress my immune system, to lower my counts. It's not happening. The infusion today was short though, so I had extra time being out in the city. Some days I really love it here.
I've tried to get back to everyone so far who has messaged me, and I apologize for not being prompt with some of you. I'll try to do better! Thank you all for your encouragement & well wishes.
My bone marrow was free of disease, which is good for a number of reasons. Some patients with bone marrow involvement have "neurological toxicities." It's possible I could still have that, but less likely and that side effect was one of my bigger concerns. It was good enough that they've decided not to put me on anti-seizure medication. It's coming up so fast, it's still hard to believe. In one week it will be the 4th of July, and I will have had my new killer t-cells for 2 whole days. My life is changing in a big way and my blessings are too many to count.
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 me. 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.
The tools of the trade for the bone marrow biopsy. The nurse did a great job. It may actually be the best one ever. While I was waiting to begin I read some disturbing statistics though.
Only 3% of cancer patients participate in a clinical trial. WHAT?! Women and minorities participate even less. I can't even count how many trials I've participated in up to now. One was as simple as monitoring mouth sores. (I had none.)
Here's a link to a New York Times article about this. Get in a trial people! I respect everyone's choice and right to decide the course of their medical care. I don't understand this though. Granted, trials are not for everyone. That being said, participating in cutting edge treatments with some of the foremost experts in a particular disease with extra attention paid to medical care sounds okay to me. A trial like I'm doing now is a big deal. Every patient shouldn't rush out to get on this bandwagon. The cancer center in my hometown isn't equipped to do clinical trials. Many patients do not want to take the lead in their treatment, and just want to hand it over to their doctor. I've met many patients who do not even know their diagnosis. I'm not saying there is anything wrong with that, sometimes learning too much can be overwhelming. If your doctor is an expert in your disease and you're comfortable with them driving your bus then that can work great. My original oncologist saw all types of cancer patients though. His work load would not allow him to be an expert for all of us. I realized early on if I wasn't seeing an expert, then the onus was on me to learn as much as possible. Who else has more of an interest in keeping me alive?
Back to this article. How did we ever move past a bag of leeches and drilling holes in heads to let the demons out with only 3%? This is a troubling and disappointing statistic.
I would love to talk to other patients going through this, I know they're out there. I was told by a coordinator other patients have said the same. With HIPAA policies though, the clinic is not allowed to match us up for play dates. I'm thinking of wearing a sign around my neck to advertise my status. My family is split on whether this is a good idea, but said family member also didn't think me panhandling at WalMart to offset medical expenses was a good idea either.
A pic of an actual t-cell killing a cancer cell. Amazing!
Recently there was a blood cancer conference in Switzerland. Like within the last week. Naturally, I have a lot of reading and studies to pour over.
My family members just love sentences that start with "Listen to this data!" The most recent article I'm geeked up about is linked here: For science nerds like me. Long story short, the very limited data in this study is extremely encouraging.
Tomorrow I will be getting a PICC line put in for my 4 days of chemo and blood draws over the next month. I'm one day closer!
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.