The title of this post is misleading, because usually my Cocktails with the Cult posts are about actual drinks that you can have. But this edition is about the drug cocktail I’m on, and an explanation of why.
So, two weeks ago, I finally had that PET scan that my former insurance company refused to pay for last year. At this point, I’d like to give a shout-out to the federal employee Blue Cross/Blue Shield plan for being the expensive but very comprehensive plan that I need. I read their policy like 14 times to make sure that it actual said that diagnostic imaging didn’t require preauthorization, and that PET scans were a covered procedure, because a lot of insurance plans are refusing to cover PET scans these days, or only approving them after other scans are inconclusive. I will save my rant about that for another day. Suffice it to say, if you’re a federal employee and looking for the Cadillac of insurance plans, rather than a low-cost-I-don’t-expect-to-get-seriously-ill plan, go with Blue Cross/Blue Shield over GEHA.
Anyway, the PET gave us mixed news. The good news was that the hip and sternum tumors didn’t light up, which means at this point the PET found no cancer there anymore. Thank you, chemo and radiation from last spring! In addition, we saw nothing in the chest area where my breast used to be.
The bad news is, I have new tumors, one each on two of my vertebrae. And the bone marrow in my right humerus lit up as well. In addition, the lymph gland near my heart that lit up on the first PET lit up again, like it did on the first PET, and it’s gotten a bit bigger. This means my disease has progressed.
This is by no means cause for panic (I keep thinking of that Monty Python sketch–“Bring out your dead!” “I’m not dead!”), but it’s definitely not good news. My oncologist (who my readers will, by now, realize that I trust 100%) and I agree that sitting on our laurels would be a really dumb idea. He’s not ready to jump into chemo right away, and I saucily told him “Yeah, I’ve got a book launch to do, chemo now would be inconvenient.” Instead, we’re adding a new drug to my cocktail, which I am naming The Hormonal Sunset. Because the goal is to sunset all that pesky estrogen that my cancer likes to eat so much.
So, here’s the recipe for my cocktail that you can’t have. I bring you The Hormonal Sunset:
1 part anastrozole, taken in pill form every day
1 part leuprolide, taken as a shot every 3 months
1 part fulvestrant (the new addition), taken as a shot every month, but with a loading dose at the beginning requiring a shot every 2 weeks for the first month
1 part denosumab, taken as a shot every month to help strengthen the bones my cancer is trying to eat
1 part gabapentin, taken as a pill every night for hot flashes
2 parts calcium with vitamin D, one pill taken in the AM and one in the PM, to keep my bones strong in the face of menopause
We might be adding palbociclib, which is a drug that literally JUST got approved by the FDA this month, to my cocktail if Blue Cross/Blue Shield agrees to pay for it (see how I said such nice things about them earlier? I’m trying to be their new favorite patient so they’ll keep paying for everything I need) and/or if I end up in a trial for it. (I’ll be writing a post on clinical trials in the coming weeks–stay tuned.)
You’re probably wondering how I’m doing with this news. Am I freaking the fuck out? Not really. Because the other thing my oncologist and I talked about is where we’re going with this whole treatment thing. I asked him if getting to no evidence of disease (NED for short) is the goal, and if so, if that’s a realistic goal. And he was like “Yes and yes.” He feels like we can get there with the addition of fulvestrant, but even if that turns out not to work, we’ve still got chemo in our back pocket. It worked so well last spring–remember how the big ass tumor in my breast was just scattered cells in scar tissue when I had my mastectomy?–that we’re hopeful my cancer will respond as well if we need to try it again. That NED is on the table as a realistic possibility, and not just some pipe dream, means I’m not going anywhere anytime soon. And that’s very good news indeed.
Which again brings me back to my shameless sucking up to Blue Cross/Blue Shield, because I’m going to need another PET in 3 months to see how the cancer is responding to The Hormonal Sunset. That would put us in May. I promise to keep you all posted about how that goes.
I’d say cheers like I usually do in my Cocktail posts, but I really don’t want any of you to have to take this cocktail, ever. Seriously.