Remember the movie Primary Colors? I’m sure a lot of folks have been thinking about it this election season, since it was based on Bill Clinton’s 1992 campaign–but don’t worry, this isn’t a political post. I’m thinking of the scene where Kathy Bates’ character tells the candidate and his wife that if they try to expose their opponent’s dirty secrets, she’ll expose theirs. And then she says, “Yes–I will burn this village down to save it.” Because that’s what I’m about to do to my cancer.
My latest brain MRI results are finally in, and I’m up to 7 teensy brain mets, from the 2 on the last scan. They’re still super tiny so #bestdocever is cool with us going on the vacation we’ve been planning forever, and rescanning when I get back. In other exciting news, my PET last week also showed progression–liver tumor growing, iliac tumor lighting up again, arm tumor lighting up brighter, and a lymph gland that briefly caused a scare that it might be a pulmonary embolism but thank goodness it’s just more cancer.
So, goodbye Afinitor/Exemestane, and thank you for the giant mouth sores, the mood swings from hell, and the 5 lbs I gained in 7 weeks. At least you didn’t make my toenails fall off and give me extreme fatigue? Now it’s time to get serious. I’m going nuclear on this cancer shit.
The plan is to biopsy a tumor, send it off for both genomic and proteomic testing, and then we go on our 3-week vacation, while taking something to tide me over until I get back (#bestdocever is still figuring out which drug that’ll be, but he promised it’ll be a gentle one so I can enjoy the vacation). Then I go see some doctors in Sioux Falls and they tell me what kind of craaaaaaazy ass combination therapy to take. They like to combine 3-4 different kinds of drugs, like a CDK 4/6 inhibitor and an immunotherapy drug and an mTOR inhibitor and chemo, like, all at once. The idea is that you have to target multiple pathways all at once, because if you just target one, it uses other pathways to just go right on growing. But if you target different pathways all at once, the cancer can’t figure out how to keep growing and it dies. This is how Hodgkins went from death sentence to usually cured–combination therapy, motherfuckers!
Then I fly home, and #bestdocever gives me the drugs and I feel like crap for several months, in the hopes that I’m one of the 93% of heavily-pretreated MBC patients who respond to this crazy badass insanity combination therapy in their ongoing study. Yes you read that right, only 7% of patients, all of whom were heavily pretreated, progressed while on the full combination therapy. Because I’m done with going from drug to drug to drug watching each one fail me in a matter of weeks or months. That leads to a 33 month median survival, which is some straight up bullshit. The standard of care isn’t working, so it’s time to abandon it and try something else.
I’m expecting this to be a pretty toxic regimen. The patients in those initial Hodgkins trials got horribly sick on the VAMP protocol. People asked Vince DeVita if his patients even spoke to him after he put them through that. But you know what he says now? “Yes, they do–and they send me pictures of their grandchildren.”
Oh yes, I will burn this village down to save it.
6 thoughts on “I will burn this village down to save it”
OMG, please keep us updated on what happens with this combination therapy. 93 percent is amazing! I’m sick of going drug to drug too, liver tumors growing, just ticking away the months. Good luck, you’re in my prayers.
I’ve been following you for a few months & am awed by your continued & overwhelming drive to battle this ridiculously cruel and nasty disease. I wish you a wonderful vacation with your family and a truly miraculous response to your upcoming combo treatment. You give us all hope & courage to find new treatments and support and DEMAND more for MBC research & treatment.
Beth, hearing about this progression sucks, but I love the fire that has been lit under you (as if there weren’t one already!) and am so intrigued by this combination therapy approach. Are there specific articles or books you read about how Hodgkins disease because largely curable?
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Absolutely! I’d highly recommend The Death of Cancer, by Vince DeVita. It seriously blew my mind.
Beth, I am excited for this hope and high percentage of success. Thank you for sharing this, so others can learn of this treatment strategy.
Have a great vacation and positive thoughts, good juju, and everything possible I can send. Plus a huge hug!
Go Beth!!! Burn it down! I just read his book and I am impressed with DeVita. What commitment to the patients, what forward-thinking optimism to reach beyond standard of care and actually try to improve treatment options. I hope the Moonshot people read it and take notes.
Good luck and I hope your vacation is great too.
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