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.
I hesitate to say I'm having a bad day, but I am crabby. Not about anything going on with me.
This morning I learned of a loss of a young woman and it's breaking my heart. I wish I could do something or anything to ease the grief of her family. I'm in a bit of a mood, and then I went down a rabbit hole that leads me to the following.
Anyone who gets diagnosed with cancer is going to meet a lot of new people. It's pretty much impossible to avoid. Some casual acquaintances wind up being extremely close and invaluable. Some "close" friends and family don't know how to deal with it and drift away. Then there are some people like the following jackass I'll name "JJ" to protect his privacy. JJ doesn't have much experience, but that's irrelevant. He knows people. His oncologist is practically his BFF, and he's on speed dial and email 24/7 with him. No matter what you're doing, chances are it's wrong and JJ is going to tell you about it. He's an expert. It leaves me scratching my head how JJ hasn't single handedly eradicated cancer because he's just that good. He's going to tell you what treatment you shouldbe having and where. The jackass I'm referring to is single-handedly the reason I was hesitant to even share my own experience with this trial. He's also the reason that I'm not going to get into a lot of specifics. Luckily for him, he's already an expert in everything to do with my treatment, not that he's having it or anything else. I avoid JJ's as much as possible, and I encourage anyone else to do the same. Arm chair quarterback internet experts like this are in no way qualified, even with all their connections.
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.