Apologies to anyone who has looked for an update, and many thanks to everyone who has contacted me. I will still answer whatever I can.
It's only been a few months, but everything is going according to plan. My t-cells are still doing their thing. I couldn't be happier! I get lab work every 2 weeks. Last week was pretty funny, since it was at my local center and they weren't used to seeing a kit for research and everything involved. More entertaining to me was that it was barely half of what it had been.
Everything seems to be getting back to normal, if it can be called that. My days still have a sense of urgency to them, like I need to squeeze every moment out that I can. On days that I fall short, my night involves tossing & turning, stressing over wasted minutes. This feeling should start to subside, I've been here before. Physically, I feel good. Still. There's a caveat...I do feel different and I don't know at all how to describe it. There's the usual questions medical staff ask...are you having pain? I am not. It's impossible to know is this normal? What is this feeling?
Uh oh, this looks like it could be serious. Actual form at Drs office below.
Last week I stopped in at Juno to say hi. They were excited to meet me, I was more excited to meet them! Juno is the company who magically took my t-cells and turned them into cancer fighting BAs. They turn t-cells into Chuck Norris. I think I'm going back in the near future when they can be formally prepared for my arrival. They are just so nice, it continues to humble me to meet all of these people behind the scenes who are working to eradicate cancer. I left feeling like I had met true heroes and that I wish I was local so I could try to get a job there myself.
I think I was officially discharged yesterday. I got to go home. My clinic visit with the lead researcher Dr. Maloney was an emotional, joy filled experience. I am on cloud 9 and I can't stop thinking about how fortunate I am in so many ways. My journey into this trial and through it has been miraculous. I am not a bible thumping person in any way, but I can say I have seen God's hand at work during this and it has been awe inspiring. My doctors also bring me to tears. I'm not sick. The official time from treatment to my all-clear no cancer scan was 4 weeks.
A few things about CAR-T. T-cell therapy, CART19. This is NOT chemo or a drug. I guess it would be classified as immunotherapy. What happened was: 1) I had blood taken and t-cells from my own immune system seperated out. 2) My t-cells were genetically modified in a lab to attack cancer cells. They also attack the good immune cells, because what I have is a cancer of the immune system, lymphoma. 3) The new t-cells were given back to me. They multiplied on their own and wiped out any trace of cancer. This isn't perfect, I'm missing part of my immune system. However, some chemo drugs also have similar side effects.
Here's the thing. I may have been lucky enough to get into this, but it's NOT about me. This treatment is going to change the face of cancer. I can't stress that enough. When I was diagnosed, there was no "cure." That may be the official stance since this hasn't passed the test of time yet, YET. The face of CAR-T immunotherapy is changing and growing so rapidly. Right now, it's been used on blood cancers and a few others but the trials for solid tumor cancers are starting now if they haven't already. I pray that my participation moves this one more step forward to other forms of cancer.
I am optimistic, but only because I have every reason to be. I'm not a pollyanna by nature. I wish I could shout from the highest mountains for everyone how exciting this is for future patients facing cancer.
Please email questions to me personally, or find me on Facebook. I don't know all there is about CAR-T. Guess what, the doctors don't either. I will answer what I can or try to find out. I will be continuing my follow up with the same team. The only downside to my day yesterday was trying to deal locally to find a doctor who will work with Dr. Maloney to monitor my labs, etc. I'm trying not to take it personally.
Also, I apologize for the disorganization of the blog, blogging isn't my strong suit!
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.
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.
It's been a whole week without an update, and today's update is equally small. It's nothing but a waiting game now. It's challenging being away from home, but it's not too bad. Today's small amount of news is that my recent research blood work shows that the t-cells ARE doing what they should be doing. They're hanging in there, they are expanding, the other cells that should be making an appearance with them are also there. Good news! Bad news? It's too early to know anything for sure. I no longer have daily labs, I'm now on a 2x a week schedule. Everything is going well. The word "optimistic" was used multiple times today.
I have moments where I am hit by the very real possibility that this could all be behind me soon. Living a life without worrying about cancer seems within my grasp. I try to be prepared for any outcome, there are no guarantees. Yet CAR-T cells are so promising, I can't help but be overwhelmed at how fortunate I am to be on the ground floor of this treatment.
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.