(Spoiler Alert: This has nothing to do with Star Wars. Sorry.)
For those of you who don’t follow me on Facebook (good for you), I’m happy to announce that I had another clean PET scan!
Even though the term “remission” isn’t generally used with stage four cancer diagnoses, I’ve decided that I’m going to go ahead and use it anyway. Because whether the cancer comes back or not—there’s an 84% chance it does, aka 16% chance that it doesn’t—for now, I am cancer free.
So, rules be damned… I’m in remission!
A clean PET scan wasn’t the only good news we received at our appointment with our elegant, dewy-skinned oncologist, Dr. Huang.
A mere two weeks before our appointment, a study was published about an oral chemotherapy drug called Ibrance and its ability to delay cancer progression in HER2+ breast cancer patients.
On my current regimen of immunotherapy drugs (Herceptin and Perjeta), I shouldn’t see any disease progression for 29 months. Adding Ibrance may increase this delay to 44 months.
Before the doctor was even done speaking, I was like, “Yeah, let’s do it!”
Classic Sam.
Jordan waited until she was finished and then asked a couple thoughtful questions.
Classic Jordan.
One question Jordan asked astutely was if I might have an even better since I didn’t have any active disease to begin with. In other words, if the drug is supposed to delay progression of the disease, and I currently don’t have any disease, how can it progress?
It’s hard to explain how life-changing this question turned out to be. Because it was the first time I realized, perhaps naively, that not everyone gets a clean PET scan.
In other words, I thought that my getting a clean PET scan was remarkable because it only took four rounds of chemo. I didn’t realize getting a clean PET scan was remarkable period. I had no idea that only a quarter of patients ever get this great news, no matter the amount of chemotherapy.
Only 26% of patients with my diagnosis get a clean PET scan. Ever.
I recognize this is just a statistic. Cancer is more complicated than the averages these statistics present. For better or worse, there are outliers and other factors at play.
But as someone who got a 4 on their AP Calculus test, I like numbers. And this number brought hopeful order to a world of chaos. It gave me more hope than my first clean scan did three months ago.
Thank God I married a man who asks questions.
In response to his question, Dr. Huang said that the Ibrance study didn’t distinguish between how much disease people have after the first line of therapy. It examined all HER2+ breast cancer who have gone undergone standard first line therapy (chemo and immunotherapy). Thus, among broad spectrum of patients, whether they did or did not have a full chemo response, Ibrance delayed progression for about four and a half years.
The second and more obvious question Jordan asked was about side effects.
“If Ibrance is a chemotherapy drug, will Sam have the same health problems she did during her infusions?”
Dr. Huang’s frustrating answer was “maybe.”
Ibrance is an immunosuppressant (as all chemo drugs are), but oral chemo is not as potent as infusion chemo. If it was, no one could take it for years on end.
But for someone like me, with borderline white blood cell counts and two daycare-going petri dishes, taking Ibrance might cause some… unpleasantness.
And the side effects, of course, aren’t just immunity related. There’s also fatigue, nausea, and the lesser talked about symptom of toxic bodily fluids…
I’d forgotten about this last side effect until two days after our appointment when I got a call from a pharmacist to discuss Ibrance in more detail.
The robotic but still human pharmacist asked, “Do you have any children?”
I HATE when medical professionals ask this question. Because it means that whatever we’re about to discuss might, in some way, harm my children.
I replied, “Yes.”
The pharmacist continued indifferently. “Okay, well your bodily fluids will be toxic so just be sure to close the toilet before you flush every time you go to the bathroom.”
“Just be sure…” Him using the word “just” made me want to pop his eyeballs.
On paper, closing the lid before you flush is as easy as the word “just” implies. But the remembering part is not as easy. And ironically, remembering to cover my toxic fluids would be hardest to remember when I’m around my kids, the same ones I’m supposed to be protecting. Whenever I sneak to the bathroom when I’m watching the boys, I pee like I’m trying to set the record for world’s fastest pee, hoping to avert any potential crisis. In these moments, I can barely get my pants up after setting the record of fastest pee ever, let alone remember closing (and child-locking!) the toilet seat before I flush.
Going over the side effects with Dr. Huang and the pharmacist felt like déjà vu. Like I was back at square one again despite having just beat cancer.
Am I really starting chemo again, even though I don’t technically have cancer?
Yes. Yes, I am.
Because fighting cancer is a gamble. You have to play the odds. Especially if you have a family to live for.
And who knows. Maybe the side effects will be tolerable. I’m going to start on a lower dose and hopefully that will keep me from feeling too awful. We’ll see.
And if the side effects are that bad, then I won’t take it. And I’ll continue playing the odds I have now. And so far, luck has been in my favor.
I had a one in four shot of getting a clean scan. And now I have a one in six shot of the cancer never coming back.
A one in six shot is not a miracle. That’s just guessing a dice roll correctly.
I’ll end on another hopeful note. Only seven months after getting diagnosed, the treatment for HER2+ breast cancer has improved with this new study. Progress like this gives all of us with breast cancer hope. Tangible, non-hypothetical hope.
And hope is medicine. Medicine that doesn’t give you toxic poo.
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