I spent two days in Seattle last week, the first day to get a current PET scan (29 days after the last one!) and meet with the people who will be seeing me through the CAR-T procedure. The Immunotherapy floor is divided into three teams and I think it's serendipitous that I was put onto the Ruby Team since that is my birthstone!
The second day was spent trying to absorb a not-so-trivial amount of information regarding my chemo pill (acalabrutinib), the procedure, and side effects, along with signing another mountain of consents for both the CAR-T and the Clinical study. Eleven vials of blood were collected and a COVID swab was done, which will be done weekly until I am discharged from services in a few months.
I also had a "vein check" to determine if my veins are large enough for leukephoresis, the process that extracts my blood and separates out my T cells to be re-engineered in a lab in California. I passed with flying colors (phew!) so I will not have to have a catheter inserted into my neck for blood retrieval. Instead, I will have an IV in each arm, one that collects my blood before it travels through the apheresis machine (also called the cell separator--duh!), and one that accepts my blood back into my body after it has already been separated.
The process will take 3-6 hours, depending on how I respond to the rate at which my blood is extracted, how thin my blood is when it travels through the machine (thin blood makes for faster extraction), and if I develop any side effects. The most common is temporary numbness or tingling in the jaw, fingers, or lips, which means low calcium due to the extraction of blood one cup at a time. In the Facebook group I'm in for people who have already had this procedure, I have been warned that my body may begin to "buzz" all over for the same reason. The easy solution is to administer calcium through one of my IV's.
The hardest part, I've been told by the apheresis nurse, is having both arms "occupied" with IV's, so when I need to use the bathroom, I will need to use a commode since I cannot be taken off the machine and the machine does not fit into the bathrooms! I will also need help since my arms will not be very useful. Oy.
The repeat PET scan was done for two reasons: in compliance with the Clinical Trial, a current PET had to be done within 4 weeks of beginning the chemo pill, and we missed that date by two days! Second, because Recurrent Diffuse Large B-Cell Lymphoma is typically unstable, it can proliferate at any moment. Thankfully, although new areas lit up on the scan, they remain small. The original site next to my trachea has grown about .05 cm. while another site on my right chest has grown .02 cm, but has an uptake rating that has gone from 1.9 to 8.29, which means that its strength has increased by a lot. Not good.
At the same time, it is interesting that my LDH has been the very best it has ever been at 152. A normal reading is anything under 199, so I probably have a better reading than many of you reading this, though I don't understand why that is and I forgot to ask the MD. LDH is the marker that determines lymphoma, so why it can be "normal" while I have active cancer sites is mind-boggling.
Although I'm on a chemo pill, its use is not to shrink any of my cancer, but to (hopefully) lessen the possible harsh side effects of the CAR-T. Since the Clinical Trial is studying the efficacy of this pill, it is free to me and to my insurance company, and if I do well on it, I will be expected to take it for at least a year. It has already proven to be a promising drug in shrinking leukemia, so it will be interesting to note how I respond.
The reason I am not on the chemo pill specifically to shrink any tumors is because these sites are resistant to chemo. I have already had several sessions and cancer still returned, so giving me anymore is no longer beneficial. Hence, the CAR-T, which is currently a "third-line" of treatment, which means that participants have to "fail" two previous treatments. Technically, I have "failed" three: chemo, radiation, and immunotherapy. Because CAR-T has become such a promising treatment in recent years, however, it is quickly becoming a 2nd and 1st line of treatment.
Good news, indeed.
I've been on the pill (acalabrutinib) since Thursday night and I have to take it with copious amounts of water and wash my hands afterwards. Hmmm, makes me wonder what hellish kind of poison I'm taking. I woke up with a low-grade headache Friday morning that lasted pretty much the whole day and into Saturday, but yesterday and today I feel fine. I have also had itchy, watery eyes for months so allergies could be causing a headache, too. Today (Monday), I do not have a headache but the unmistakable smell of chemo is a stench I have not been able to shake since I started the pill four days ago.
That's right, I can smell chemo.
It's something I was able to detect when I was going through both chemotherapy and immunotherapy. I cannot explain it other than to describe it as smelling something that resembles poison, though I have no idea where I would've smelled poison for comparison.
It boggles my mind that I am the gal who is fastidious about using essential oils, organic foods, and homeopathic capsules, but I am also the gal who is putting poison into her body...willingly, and again. What the hell kind of madness is this?
It just doesn't make sense on so many levels, and yet...it does.
Science, research, and humans have all collaborated for decades about what works and what doesn't to eradicate cancer, and so far, I've followed their recommendations while using all of my homeopathic remedies. One method offered a 20-month remission, one gave me nothing but pain and a failed outcome, and this upcoming procedure has had very promising results. Sadly, sometimes it takes the right cocktail to create a long-lasting remission and I am aware of many people who have had to attempt several treatments before finding their "right cure" (or not).
But I also know that living like this, on the edge of life, is not very fun. I am missing out on so much (though it's hard to tell what's due to cancer or to COVID these days) while building my life around treatments, appointments, and how I'm feeling. It's been a big nuisance and annoyance. And while I'm grateful for this new option that may be my miracle, I'm not sure if I'd subject myself to this again if CAR-T does not become my "right cure."
It's all so exhausting. And I'm ready to rejoin humanity without having to worry about my cancer status.
So within the month, I will be undergoing my next attempt to reclaim my life. And because I'm a girl who expects miracles, I have high hopes that this will be my "next one and done."