I will burn this village down to save it

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.

We’re Different

An idea has been buzzing around in my head lately that I’m struggling with, and so I’m writing it out here because I think it needs discussion. I really want to hear your thoughts on this.During the civil rights movement of the middle of last century, there were two competing approaches. There was the Martin Luther King approach of integration and working with people of all races to improve the lives of black folks. And there was the Malcolm X school of thought that said that African-Americans needed to take their power and lift themselves up, that integrating would always mean subjugation in a white system, and so black systems needed to be created.

I’ve always been an MLK kind of activist, and have continued to be so in my cancer activism. I am grateful for the support of people with early stage cancer or no cancer at all who see that metastatic patients are getting the shaft in a cancer system that celebrates survivors and ignores the dying. I continue to believe that in activism, allies are essential. This idea bouncing around my head isn’t about excluding anyone from the movement to save the lives of patients with metastatic cancer. 

But I’ve started to think that metastatic breast cancer can’t be incorporated into traditional breast cancer programs, that it needs its own system. Metastatic patients are just fundamentally different from early stage patients. We aren’t part of the pink party narrative, and we’re never going to be. Trying to integrate us into the existing work of groups like Komen or Warriors in Pink just doesn’t make sense, because that’s not who we are.

So maybe what we really need is a Malcolm X approach: we need the Komens of the world to create new programs for metastatic breast cancer, instead of trying to integrate us into their existing programs. Let the 3-Day be about pink feather boas and funny hats–let the early stagers celebrate their NED status–but ALSO put on major fundraising events that are appropriate to metastatic disease, where the funds go directly to metastatic research and metastatic support programs. Create a new system for us.

We’re starting to see this in other programs, like Pfizer’s Story Half Told, which isn’t pink at all, and in metastatic patient conferences like Living Beyond Breast Cancer’s Thriving Together Conference. I go to a mets-only support group, because my needs are fundamentally different than the needs of early stage patients. If LBBC can do it, why not Komen?

Imagine if Race for the Cure was transformed into something that is truly about cure. Take all the pink off of it–get rid of the dogs in bras and replace them with pictures of those we have lost, and those who we’ll lose too soon unless more research happens. Guarantee that every dollar raised by the race will go to metastatic research, not marketing or “awareness,” so participants know that what they’re doing is actually going to save lives. Imagine how much more money they’d raise.

And, imagine if we extended this paradigm to other areas of cancer. Imagine if NCI had a dedicated metastasis research program, with metastatic patient advocates and doctors specializing in metastatic cancer treatment and bench researchers focused on understanding metastasis. Instead of trying to incorporate metastatic cancers into the existing organ-of-origin structures of cancer research, give us our own programs.

Or, more radically, maybe what needs to happen is that we just ignore the existing breast cancer world entirely and start a new one. Maybe groups like MET UP and METAvivor and MBCN have the right idea: building new systems of research funding and lobbying, outside the pink world, across organs of origin. Maybe it’s just that I’m tired of trying to fit into legacy breast cancer organizations’ existing framework, because that framework doesn’t work for us, and it never will, and I’m not seeing those frameworks changing dramatically in my lifetime. Maybe Komen is a lost cause.

Anyway, that’s what’s been bouncing around my head. Let me know what you think of all this in the comments!

An Open Letter to Vice President Biden

Dear Mr. Vice President,

I want to personally thank you for all you’re doing for cancer research right now. It’s so powerful how you’ve been able to take the indescribable grief of losing your son, and turn it into something that will hopefully spare other families from experiencing the loss your family has suffered. 

However, I have one major concern about how your Cancer Moonshot program is playing out: it doesn’t appear that you’re taking terminal patient voices into account in any formal way. I noticed when the Moonshot’s Blue Ribbon Panel was announced that there don’t appear to be any cancer patients on the panel who aren’t also researchers. I noticed one patient advocate listed–the only on the panel without an MD or PhD after their name–but no actual patients, and none of us who are dying from cancer. And, it’s playing out in a similar manner in the Moonshot Working Groups. Only a couple of the groups have anyone without a PhD or an MD after their name.

This is something that remains a serious problem in cancer land, despite recent advances in patient-researcher communication. We terminal cancer patients can be hard to coordinate with. We get sick, we have days where our fatigue overcomes us, and we can’t always travel to DC for high-level meetings with government and researchers because treatment gets in the way. And maybe that’s why advanced/metastatic patients aren’t usually involved in deciding what research questions get the bulk of the funding, and maybe that’s why funding for metastasis research is alarmingly low.

Many of us have horrifying stories about oncologists writing us off as soon as we’re diagnosed with an incurable cancer, sending us home to settle our affairs without even discussing the available treatment options. And a lot of times, cancer research feels like that. We’re out here dying, and we often feel that nobody is listening, because we rarely have a seat at the table. 

When the Moonshot was announced, I was so filled with hope. I sat crying with joy watching the State of the Union, knowing that someone who really gets what it’s like to lose a family member to terminal cancer was going to be spearheading the work. But seeing that no metastatic patients are part of deciding how to tackle the enormous challenge of saving lives made me cry in a different way. They were tears of anger and frustration and despair. 

I hope you’ll consider including metastatic patients as decision-makers in the Moonshot program. If you’d like, I’d be happy to send you a list of amazing patient-advocates with demonstrated track records of working collaboratively with researchers–people like Janet Freeman-Daily, who works on lung cancer issues, or CJ Cornelius,  who works on breast cancer issues. These patients can bring an important perspective to the Moonshot’s work, and their voices deserve to be heard. 

I look forward to your reply.


Beth Caldwell

Co-Founder, MET UP