I'm shocked to see how long it's been since I posted an update here. There are a number of reasons for that including the pressure I manufactured for myself to write lengthy, analytic pieces. I do still want to, of course, but there's no reason every update needs to be a literary occasion. Sometimes you just have some news to share. Or, in this case, several successive pieces of news.
First, I had my first set of post-chemo scans back in June. I had gotten well into the routine of attending my weekly infusion sessions (often with one of my lovely and supportive friends for company) and was even adjusting to the idea that I had to bid my hair farewell and wear a wig during the hottest part of the summer. My scans were, however, a highly mixed bag.
Before I launch what they showed, though, maybe I should recap for you where all my cancer is. Because I have so. much. cancer. I know that the term "metastatic" may not immediately convey that to everyone since it sounds so clinical and impersonal and honestly just means that the cancer moved beyond its initial site. It could have moved very little or very much. Mine had already moved a lot and got worse during the period between diagnosis and treatment when I was writing the most here. The original site is a large (like, egg-sized) tumor in my left breast. There's one lymph node next to it that is also affected (though only one). There are two spinal tumors at the L4 vertebra and SI joint and they've made an incursion on the bones themselves (so much so that I gave myself a small compression fracture by running on pavement...but that's another story that I choose to tell as "that time I went to work with a broken back"). The lungs were affected, with at least four measurable tumors and several smaller suspected spots. They were all very unsure about the liver. One very large mass that had been there since 2016 was ruled non-cancerous but then in March they saw two more nodes that might be. So honestly no one knows whether it's there or not but it might be.
So, for your Rebecca vs. Cancer Scorecard we have:
- Original breast tumor
- Lymph node (1)
- Lung tumors (4+)
- Spinal tumors (2)
- Liver (2?)
Ok, so back to my June scan results showing how chemo did at clearing out these cancer-weeds. The one very positive thing they showed was that the chemo worked really well on the tumors in my lungs. Only two were still visible and they were much smaller! Great news, especially since the lungs were the scariest thing to have affected. But the rest wasn't great. Two tumors--the original one and one on the liver--actually got BIGGER while I was on chemo. The others didn't seem to get much worse (ok news) and they didn't find it anywhere new in my body (positive news).
But you can see why, coming out of that, I felt disappointed and angry. I didn't feel much like posting because, despite the fact that I know that beating cancer isn't an assignment that I can be a good, straight-A student about I did feel like I'd failed. Or that my body had. Or that medicine had. The point was, SOMEONE had failed and I didn't feel like I could publicly tell everyone that without some better news to add to the mix.
Luckily, though, I was eligible to join a really promising clinical trial that had a branch at Penn. My oncologist in Princeton contacted a friend there and fast-tracked me onto it. Only, it turns out, the fast track is also slow so it took nearly 3 weeks to enroll. More on the study another time but the short version is that it uses PARP inhibitors. PARP inhibitors are super clever drugs that essentially disrupt the repair of the DNA in cancer cells. They are highly effective and work on people who have the BRCA mutations and are already in use for anyone who inherited those. The study is testing whether they will work in the same way on people who have BRCA mutations in the tumor only. (This is "somatic" BRCA; the other is "germline" BRCA.) I have a BRCA2 mutation in my tumor, though not my regular cells, making me the perfect demographic for it. I also have triple-negative breast cancer (TNBC) which is the area in which these are most promising since so many other options are closed off to those of us who don't have other receptors (estrogen, progesterone, or HER2). Some people from the earlier, germline BRCA studies of PARP inhibitors have been on them for years, keeping their cancer in check and turning into something more like a chronic condition. It's not a promise, of course, but it's all very promising and gives reason for cautious optimism.
Joining the PARP study at Penn took a lot of driving to Philly and some tests and scans including a painful research biopsy where they took 14 core samples--a TON--because I just can't stop myself from donating tissue to any study that asks (never say I'm not a true believer in research medicine!). But on July 5th I became an official participant! Then on July 8th I flew to the Netherlands for a weeklong conference that I had been looking forward to (and holding out as a treat for myself) for months. I only just got back but went immediately for a check-in and additional CT and PET scans.
I actually agreed to join a related study about whether a new tracer will be able to predict the effectiveness of PARP inhibitors by showing the relative uptake on CT/PET. I got initial findings from my first set of scans (on July 3rd) and they showed two extremely positive things. First, their nuclear medicine specialist didn't see anything to report in my lungs!! This isn't an "official" clinical finding but the doctor running the study said that if she hadn't had my history she wouldn't have known the lungs were affected. THIS IS EXCITING NEWS!!! Sure, there are probably still cancer cells there, but given that back in February I was short of breath thanks to lung tumors this is huge! Second, my scans showed really high uptake especially at the sites of the spinal tumors. What that means is that they are very sensitive to PARP and, therefore, inhibiting it should affect them more strongly. They were also uncertain about the liver, saying that while the other sites had elevated uptake it was only baseline and therefore indeterminate for cancer.
Returning to that scorecard for a second we now (tentatively, with the knowledge that cancer cells are clever and can always find ways to sneak around treatment again later) have:
- Original breast tumor - PARP sensitive
- Lymph node (1) - PARP sensitive
- Lung tumors (NONE visible) ✅
- Spinal tumors (2) - very PARP sensitive (their days are numbered)
- Liver (2?) - PARP baseline (indeterminate for cancer)
In the meantime, I'm living a very busy life with another conference coming up next week, plenty to do at work, and lots of time with friends (who are traveling to hot, humid NJ just to see me). My great annoyance is that I am STILL (impossibly) shedding hair from chemo six weeks later; I worry that I'll end up needing that wig after all. But, honestly, I've been fortunate so far in that I get to continue to do the things that make me feel most like myself that I know it's a trivial thing to care about.
And that's where I've been! Thanks to everyone who's continuing to reach out and especially to my local Princeton friends who have been ready with rides and company even at ungodly hours of the morning and to the friends making special visits and not minding that they include visits to hospitals. I continue to be so fortunate in all of you.
Much love,
Rebecca
