As some of you are aware, I embarked upon an oncologist directed experiment of one (1) person (me) about three (3) months ago when we added Kisquali (a/k/a ribociclib, a CDK4/6 inhibitor) to targeted therapy, Piqray (a/k/a Alpelisib), along with Faslodex (a/k/a Fulvestrant) and a rather lengthy list of medications to address side effects and supplements, etc. If that sounds like a lot, it is. I’m still on the highest dose of both targeted therapies, which has been a lot on my body. However, we had to do something different since the PET three (3) months ago showed that all of my mets (and I have many many bone mets) were becoming significantly more metabolically active, a harbinger of progression to come. My doctor didn’t want to let go of Piqray as my second line of treatment because I have its target, the PIK3CA mutation.
Well, my first PET since starting this regimen was the 8th of June and the results are pretty freaking amazing. The report includes phrases like …
- interval resolution
- multiple lesions … most of which do not demonstrate … abnormal uptake
- significant interval improvement
- mild residual metabolically active metastatic disease
- no evidence of new metastatic osseous lesions
- no evidence of soft tissue metastatic disease
Frankly, three years into this experience with Stage IV metastatic breast cancer, this is the best scan I’ve ever had. Many of my last tests included phrases like “innumerable lesions” and “high risk for fracture” and “pathological fractures” and “compression fractures” and “increased metabolic activity” and “new metastatic lesions.” I watched for stability, at the measure of metabolic activity, the SUV values, to inch lower. Every report, I pored over, finding some measure of comfort in the phrasing and parsing out the meaning of each word.
This is NOT a good idea as different radiologists with different styles used different language and it drove me nuts trying to figure out if I should read between the lines. Please don’t do that to yourself, I would make myself a little crazy each time. My doc kept telling me to keep my wordsmithing out of the medical reports, that I wasn’t reading a legal brief.
Many doctors use the phrases No Evidence of Disease (NED) or, mostly for those of us with lots of bone mets that show some activity while dying and healing, No Evidence of Active Disease (NEAD). When I asked my doctor if I qualify for either of these labels, she told me not yet … and then added, but you are the closest you’ve ever been. That’s the first time she’s told me that. I could hear the broad grin in her voice, another first.
It has taken a lot to get here, a lot of blood, sweat and tears, not all of them mine. I haven’t been alone in getting to this point, it has taken a gigantic team of medical professionals, friends and family. This victory is theirs as much as mine and I know that I don’t always remember to acknowledge that. I would not be here outside of my village and you, my readers, are part of that village in your own unique way.
We celebrate today, knowing that in a month, we could be back to progression and new lesions. Friends got good news this week and friends got very bad news this week. The rollercoaster of this experience is constantly teaching me that today is what we have, today is what we need to focus on and today is what matters.