Category Archives: Mbc Project

The Thing with Clinical Trials

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Yes, that’s me working on my computer in a quiet corner while my kids are at the pool. Talk about multitasking.

Having the kids home from school over the summer while I simultaneously started two new jobs made things a little hectic. Couple that with family travel and dealing with the loss of a friend to breast cancer and writing my first eulogy, I was pretty much in survival mode. Things got done, but mostly only the urgent things got done, and then only just before they absolutely had to. So this week I’ve been trying to catch up on things that got put on the back burner, and I’ve been trying to think about some things in a bigger context.

So for a day or so this week, I started wondering about the wisdom of accepting two jobs at the same time. I’ve wanted the position with the MBCproject at the Broad for over a year, it definitely falls into the dream job category, and I accepted the position at Cure Forward before I knew that the MBCproject was going to work out. It wasn’t something that I’d been looking for, but I loved the idea of a company valuing the patient voice enough to build a team of advocates. That’s a big thing, and I wanted to be a part of it. Still, I don’t want to feel like I’m selling out, offering to speak for anyone who will hire me. I wanted to be sure that both projects were a good fit for me.

But then today I was answering some interview questions for an upcoming feature on the Cure Forward blog. Because they match patients with clinical trials, the interviewer wanted to know what I thought about trials. Well, friends, they are super important. That’s how the FDA knows if a drug is safe and effective to treat disease. The problem with clinical trials in cancer is that only about 5% of cancer patients participate in a clinical trial. Now, to be clear, not all patients need to be treated on a clinical trial. Sometimes there just aren’t trials for that cancer. But there are a lot of people who could be on a trial but just don’t know about them. That’s so sad. It keeps a potentially good drug from a patient, and lower recruitment means it will take longer to figure out if a drug is good. I think we all agree that getting a good drug to patients faster is the best outcome. There are also a lot of people who would like to be on a trial that would treat their tumor, but a long list of exclusionary criteria keeps them out. All those exclusionary criteria keep the trial neat and tidy– it’s easier to analyze results that aren’t muddied with heavily pretreated patients or patients who have other health issues, too. But not including patients in the trial who will be ultimately treated if the drug is approved seems like a misstep. This is obviously a big thing to fix, and I’m so heartened that every time I hear Rick Pazdur speak (he’s the acting director for the Oncology Center of Excellence at the FDA), he talks about finding ways to fix this problem. Still, there are so many patients who will never be on a trial, either because they don’t qualify or they live too far from a center, or they just can’t find the trial that’s right for them, and their experiences are important, too. Finding a way to capture and analyze the real world experience of all treated patients would be a game changer.

More data is what drives science forward. So today it occurred to me that all my interests really are aligned. Cure Forward is trying to break down that first data barrier by helping patients find clinical trials that will work for them, and they make it easy on the patient to participate. The MBCproject is trying to move science forward on the back end– capturing all the clinical and genomic data after the fact, including every single metastatic breast cancer patient, not just those 5% that could participate in a trial. They make it easy for the patient to participate, too. Both these groups are moving the science of cancer research forward in an important way, and they are including patients in the process. So I’m on board. If someone is working hard to move the science of cancer research forward and they want to include a patient voice in the process, I don’t see a downside. It’s going to take a lot of different people working in lots of different ways to make an impact, and I hope that lending my experiences might help patients participate in moving science forward for us all.

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When I Grow Up

When I was in the third grade, I had to write an autobiography, closing with what I wanted to be when I grew up. I’m not sure how I decided that I wanted to be a scientist, or if I ever wanted to be anything else before then, but it never occurred to me to rethink the decision once I put it in writing in the third grade. Before I reached my teenage years, I had decided that I wanted to go to college in Boston– preferably MIT, but Harvard would also work– and I would play my violin with the Boston Pops. (Don’t you love the big dreams and confidence of an 11 year old?!) By my sophomore or junior year of high school, I had my sights set on a biochemistry degree, and while I was still hoping to head to the east coast, I had (quite wisely) abandoned the idea of playing my violin professionally while I was also in college. Even though I didn’t make it out east for college, I did end up in DC for graduate school at Georgetown University, so I figured I’d pretty much gotten the dream. It wasn’t until about halfway through graduate school that I realized that I didn’t really know what I wanted to be when I grew up, I really needed to know more than “scientist.” I knew that I loved science and wanted to use that to make a difference in the lives of breast cancer patients, but I didn’t see myself making a career in academic science. I enjoyed thinking about how science could inform the way patients are treated, and I was convinced of the importance of ensuring that patients and the public really understand the interaction between science and medicine. Unsure of how to turn those things into a career, but quite sure of how much I wanted to stay at home with my tiny new baby, I decided to revisit the “What I Want to be When I Grow Up” saga in a few years, and left the lab with my PhD after Emma Clare was born.

As I sent baby #2 off to kindergarten, I apprehensively decided it was time to think about what I wanted to be when I grew up. Or maybe I should give myself a few months, and then it would be time. Instead, during those few months I was taking to get the kids settled in school– procrastinating, I know– I was diagnosed with breast cancer. After chemo and surgery and with no evidence of disease, I once again struck out to find my grown up job, though this time with a bit more hope and purpose. I’d wanted to work with breast cancer advocates before but was unsure how to transition from being a scientist among scientists to being a scientist among advocates. Now as a survivor, I had gained automatic entry into the advocate’s world. I talked to several people who declared me a unique trifecta of researcher-patient-advocate, and offered to help me get the job I wanted. All I had to do was tell them what I wanted. Which meant I needed to know what I wanted.

So I’ve spent the last three years saying, “Yes.” I went to every meeting I could, met all the people, did all the twitter chats. I blogged on my own site and wrote for anyone else who would have me. I did live and recorded interviews, gave talks big and small. Though I’ve been paid for a few small projects, it’s pretty much been like a three year internship. But I figured if I talked to enough people and did enough different things, I’d surely figure out exactly what it was that I actually wanted. It took two long years of saying “yes” to figure out what I wanted to do, and another year of saying “yes” to actually make it happen, but I finally figured out what I want to be when I grow up, and I’m starting my first real grown up job today! Just in the nick of time, too. Forty is knocking on my door, and it seems like it’s high time that I consider myself a proper grown up.

After two years of saying, “yes,” I ended up sitting next to an interesting young woman at a dinner at AACR in Philadelphia. Corrie was a scientist about my age, had two young kids, and she was a cancer survivor, too. I think we talked a little about her job at the Broad Institute where she was able to combine some patient advocacy and outreach with her scientific position, but mostly we talked about kids and cancer and the plight of young scientists pursuing a career in academic research. I came home from AACR with a stack of cards, contacts who I thought might eventually help me land a job, and a new cancer friend, Corrie.

I wasn’t surprised when I saw her name on the announcement for a twitter chat coming up a few months later to talk about the new, still unreleased Metastatic Breast Cancer Project at the Broad Institute. The surprise came from my response to the project. As the minutes of the twitter chat ticked by and I learned more about the project, I found myself becoming increasingly excited at its promise, truly believing that this team was uniquely positioned to make huge advances in breast cancer research and the way breast cancer patients will be treated in the future. (I won’t rehash it here, but read what I wrote about the MBC Project after it launched in October.) I signed off the chat that night realizing that I might have figured out what I wanted to do when I grew up, or at the very least, I’d found the place I wanted to do it. I felt a little uncomfortable, but figured it would cost me nothing, so I got in touch with Corrie. After reminding her what a charming dinner companion I’d been in Philadelphia, I gushed unabashedly about the project and told her that if she had a place on her team for a scientist/advocate in Washington, DC, I hoped she’d consider me. They were still a few months from the official launch and couldn’t really grow the staff at that point, but we talked for nearly an hour about the project and how I might ultimately contribute to the team. After another year of saying “yes” to most anyone and staying in contact with Corrie, the MBC Project has grown by leaps and bounds, and I’ll be joining the team! Technically, I think my job title is “patient advocate,” I’ll be doing outreach and education with patients and the MBC Project advocacy partners. We have a lot of ideas about exactly what I’ll be doing, but hopefully I’ll start by interacting with patients– those who are already part of the project and those who want to know more before they say “Count me in.” Corrie and Nick, the oncologist who had the remarkable vision of a research project that directly engages patients, have built a great patient community.  I hope to be a resource for those men and women, not only answering their questions, but equipping those with ideas to grow the MBC Project among their communities. I hope to interact with the advocacy groups who have partnered with the MBC Project and to form new partnerships that will broaden the diversity of MBC Project participants.  And lots more things! It’s a part-time position, and I can work from home. I will do a little bit of travel, and I’ll probably go up to Boston every month or two.

Wait. Did I forget to mention that the Broad Institute is in Boston? So maybe I should also mention that its official name is the Eli and Edythe L. Broad Institute of MIT and Harvard. Yup. I didn’t get to go to school at MIT, but now they’re paying me. Pretty stinking cool. Maybe that 11 year old wasn’t so naive after all. (But sorry Mom, I’m not going to be busting out the violin anytime soon, I don’t think the Boston Pops have a place for a DC based violin player who hasn’t played the violin in a very long time.)

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