Author Archives: Jamie

Toxicity Troubles | The Aftermath of Cancer Treatment

GBCA BCP Retreat 2017

I had the pleasure of presenting to the Georgetown Breast Cancer Program on behalf of the Georgetown Breast Cancer Advocates a couple of weeks ago at their annual retreat. In my brief talk, I hoped to encourage them to engage patient advocates as part of their research team. I was sure to point out that as advocates, we try to represent more positions than just our own.

Anytime I have a forum to speak “on behalf of the patient voice,” I try to be sure to incorporate more voices than just mine. I don’t like the idea of a few elite patients doing all the talking when researchers, clinicians, and pharma decide to engage patients. And so, when I’m planning a talk, I try to ask for input.

Next week I will be part of a session at the Society of Toxicology shedding some light on the many toxicities that patients face as they undergo cancer treatment, and those that continue for years, or follow them for their entire life. But I need some help! Do you have any burning questions or things that you think need to be considered more than they are? What would you like researchers to address going forward? Please feel free to comment here, on Facebook, or email me– I really do want to be sure I address YOUR concerns!

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Updates | Exploring Clinical Trials and Interesting Analogies

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So I know I’ve been pretty quiet here lately. Between my two jobs, a few new volunteer positions (cancer, church, and mom related), and normal shuttling of children to all the places, I’ve been pretty slammed. But I have been writing a few things lately, anytime you’re interested, you can find my latest post on my contributor page on Cure Forward. So far, five of my pieces have been published, and they focus on the ideas of precision medicine and clinical trials.  If you’re interested in a cheat sheet– here they are:

Check them out, and as always, I’d love to hear what you think!

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Time Flies

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This morning Facebook told me that I had memories for the day, and I love looking back at old pictures of my sweet kiddos, so of course I clicked over to reminisce. Among all the fun fall pictures I’ve posted on this day through the years, I was surprised to see a photo of the Washington Monument captioned with “This morning’s run.” I very rarely run downtown, so it took me a minute to remember why I’d done a special run that day. I screwed up my brow and looked at the date. And then it hit me. I’d forgotten a very important day, one that I never thought I’d forget.

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My cancerversary. Four years ago, on October 5, my surgeon told me that I had breast cancer.That was definitely one of those days whose date really sticks with you. And yet, only four years later, I might have forgotten it completely without Facebook.

So this left me with some weird feelings. I mean, I hadn’t forgotten my best friend’s birthday. But I was disappointed in myself that I let such monumental day pass so unceremoniously. It’s not really a day to celebrate, it’s more like my own personal Memorial Day– a day to remember. In the past I’ve always gone for a good run or spent the day with friends. I was disappointed in myself, but then I decided I should congratulate myself– I may not be at the point where I can’t remember the date, but I should count it as progress that the date wasn’t looming over my head like a dark cloud.

I sometimes worry that I’ll never have a “cancer-free day” where I don’t think about cancer at all– it’s my job to think about cancer. But maybe when I’m really busy and have a lot of life going on around me, or maybe when enough time has passed, maybe it will be possible for me to have a day when I don’t think about my cancer at all.

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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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Precision Medicine and Coinstar Machines

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First of all, thanks for all the love on my last post. Being part of the MBCproject team has been an awesome experience even in the first few months, and I promise I’ll update on some of the details soon! But I also wanted to share another cool project that I’ve been a part of over the summer.

I started working with Cure Forward, which is basically a matching service to help cancer patients find clinical trials based on the DNA profiles of their tumors. Though I hadn’t heard about the company before I was approached to be part of their Precision Medicine Advocates team, I knew the patient advocate who would be leading the team, so I looked into it a bit more. It was one of the private companies specifically listed in Vice President Biden’s Cancer Moonshot to help make finding a clinical trial easier, and I love the fact that they are willing to work with patient advocates to make sure that everything they do remains focused on delivering the best care to patients in the easiest way possible.

I’ve written a few things for them, and my first post went live last week. As I tried to explore what precision medicine means to me– and why it’s exciting but not the silver bullet for all of the cancers ever (right now, at least!)– I was left with the image of a Coinstar Machine in my head. That’s sort of how we do cancer care now– dump all the patients in a sorting machine and they end up in categories that determine their treatment. Head on over to my post at Cure Forward if you want to see why I think Precision Medicine is an improvement on good-old coin counting!

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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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Cancer FOMO

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I was introduced to a new cancer friend last week– a friend of a friend of a few different friends of mine. They all pointed her towards me because she, too, has triple negative breast cancer, and she had some more specific questions about treatment of TNBC. She had consults set up with a few different oncologists and a pretty thorough list of questions to ask them. She asked me about my treatment and what she might expect when she talked to doctors.

Of course, I told her what I’ve said thousands of time– I’m not a doctor. But I told her about the treatments that I’d had– dose dense AC followed by T. It was standard of care at the time, and it gave me the best results that one could expect– a pathological complete response (pCR). They knew where the cancer was before I was treated, and when I had surgery, the pathologist couldn’t find any cancer cells left. They were all dead. There is still debate whether pCR is a good surrogate for overall survival (OS)– whether having a pCR means anything about whether the cancer will come back and how long you will live– but it’s still taken as a good sign.

As I wrote to my new friend, I told her she might ask about the addition of a platinum to her chemo regimen. Since I’ve finished chemo, studies have been published revealing that more patients have a pCR if they receive a platinum in addition to ddAC-T, so I’d want that if I were her. I have another TNBC friend who didn’t have a pCR, so she is now on capecitabine (Xeloda) as a sort of preventative agent against a potential recurrence, so that might be a consideration for my new friend, too.

Let’s be clear, even without a platinum, I had a pCR, which is what those studies were going after anyway. And with a pCR, there was no reason for me to have any further treatment with potentially undesirable short term side effects and even more concerning, potential long term side effects. Yet I was left sitting there with a terrible case of #FOMO. Fear Of Missing Out. In the 3+ years since my diagnosis, there are different treatments. We all want the latest iPhone, the newest features on a car, and to eat at the hot, new restaurant. So of course, I want the best, newest cancer treatment. As awful as more chemo is (infusion or oral), part of me wants more.  The evidence based part of me knows that I’ve done everything that has been demonstrated to be beneficial to me, and 3+ years out, I have a pretty good prognosis. But thinking about the way my treatment would be different today leaves me with some serious #cancerFOMO. Maybe it’s because I worry that one more thing might be all that’s standing between me and the gold standard of all clinical trials: OS. Overall survival is really what I’m after, because regardless what I think about cancer treatments, I know that I have major #lifeFOMO. I don’t want to miss a second.

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ASCO Clinical Guidelines | Patient Perspective on Breast Cancer Treatment

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As a scientist, publications are everything. Whoever coined the phrase “publish or perish” was not joking. Publishing a first author paper was a requirement of my graduate program, and once you get on the career path in academia, publishing papers is the way to get a grant which is the way to get tenure, which is the way to keep your job. Publications are everything.

(A little background on the publication process: In science, the order of authorship is very important, but this convention is different in other disciplines. The first author is the one who did all the work, or at least most of it, and did the bulk of the writing. That’s who really gets the credit for the publication. The other names are listed in decreasing level of contribution until the last author. The last name is the senior author– usually the one in whose lab the work was done. Scientific publications are peer reviewed, meaning experts in the field are asked to review the paper, give feedback, and decide if the study is worth of publication.)

I got the required publication in graduate school, and I quickly accepted that my days as a published author were over when I decided to leave the lab after my defense. Of course, after my cancer diagnosis, I began writing, though few things were actually “published,” at lease anywhere besides my own blog! And it turns out that self-publishing is a lot less stringent than the peer review process…

But a few weeks ago, I got to add a new line to the “peer reviewed publications” section of my CV! The FDA approves drugs for specific indications, but leaves it to oncologists to decide exactly how they are used in practice. The American Society of Clinical Oncologists (ASCO) publishes clinical guidelines for practice that inform oncologists the best practices and protocols for the treatment of cancer. I was the patient representative on one of these panels where we were reviewing the guidelines that a Canadian group had just released on the best ways to treat early breast cancer patients after their surgery. (Adjuvant therapy is the treatment that follows surgery.) You don’t have to read it– it gets a little heavy, it was meant to be read by oncologists, after all– but I was honored to be included to represent the patient voice as the oncologists in the group discussed the evidence for the best ways to treat breast cancer patients. It was a pretty straightforward discussion since the Canadian group had just reviewed all the pertinent literature. We discussed recent findings and minor clinical differences between the US and Canada, and my comments and opinions were well regarded, even solicited.

Being a part of such a prestigious group is a distinct honor. As a patient advocate, representing the patient voice in such an important forum is a responsibility I don’t take lightly. But as a scientist, having another peer reviewed publication is super cool. I mean, I’m one step closer to tenure! ::fighting the urge to insert winky-face emoji here!::

If you want to check out the publication, start with the abstract. The full text is a little heavier, but available here.

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Research Advocacy at the University of Illinois

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I definitely enjoyed being back on campus at the University of Illinois, seeing all the familiar sites and eating Papa Del’s pizza, reliving my glory days! But of course, that wasn’t the reason for the trip. Zeynep and Erik Nelson are undertaking the task of starting a research advocacy group as part of the Cancer Community @ Illinois, and I was thrilled not only with their enthusiasm, but with the support they are getting from director of the Cancer Community, Rohit Bhargava.  It was a pleasure to spend time with them, learning about their hopes for the new Cancer Community that will be a part of the new medical school on the UIUC campus.

imageThey had a full trip planned for me, starting with an informal graduate student and post doc seminar where I talked a little about myself and what I do as a research advocate. Mostly, though, they asked questions. Most of them weren’t familiar with the concept of research advocacy,  and so they had lots of questions about how they could incorporate the perspective a research advocate into their projects.

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Probably the best exercise for me was the talk that I gave after lunch to a group of faculty. When Zeynep said that she’d like me to give a 40-45 minute talk, I initially panicked, not sure what I would have to say to fill that much time! Yet I took a deep breath, did my wonderwoman pose, and started planning a talk. I figured once I had it planned, I could bulk it up to fill the time. And yet, when I was done, I found that it was actually a few minutes too long! So I made it a little more concise and smooth and finished it in 42 minutes– perfect.  Part of what made me a little apprehensive, though, was not so much the length– I can always find something to talk about! I’ve given a lot of thought to what a research advocate should do and why an investigator should include them as part of the team, but planning this talk forced me to really organize my thoughts into a concise delivery. Before I had even realized it, I had a polished presentation explaining what a research advocate does, what we don’t do (just as important!), where to find a research advocate, and how to work together as part of a mutually beneficial team. I also got to spend time with some of the key stakeholders in what will become the new Cancer Research Advocacy Group, and sat in on a graduate level class. Zeynep asked her students to explain their research in a way that would be understandable to an advocate– training that few scientists ever receive! They did great, and I enjoyed the discussions that resulted after their presentations.

It was such a fun trip on so many levels. But most of all, it was such a privilege to be involved in the earliest stages of the formation of a group that I think will be such an asset to the research community in a place that is so near and dear to my heart. I can’t wait to see what kinds of ideas will result from the collaboration of biologists, research advocates, and the brilliant engineering minds for which the University of Illinois is known.

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A Run Down Memory Lane

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I just got back from the coolest trip. I met Zeynep Madak-Erdogan on twitter a year or so ago (thank you #bcsm!), and when I saw that she was a breast cancer researcher at the University of Illinois, we quickly bonded as I told her about my time there. In the months since, she has asked me to work with her on a few different projects, and she even invited me to come to campus as the Cancer Community @ Illinois starts a new cancer research advocacy group!

I’m going to get some of the “official photos” soon and I’ll share a little of the more science-y stuff I did there, but until then, the fun stuff! Zeynep and the rest of the cancer working group set up a great itinerary for me, but she was sure to ask if I wanted her to arrange any specific meetings. My only request was dinner at Papa Del’s, which apparently made me one of the cooler campus visitors and showed my UIUCroots to anyone who hadn’t already heard I was an alum. We drove around campus, and seeing the buildup of research park on the south farms where there used to be nothing but sheep was probably the biggest change. Fortunately (or unfortunately?) there are still some farms on the other side of First Street, so I immediately recognized the familiar smell of spring on the South Farms.

My other request was a slightly later start on the second day so that I could get in a run to visit some of my old haunts. Of course, as a student, I wasn’t a runner, so roller blading or taking the Red bus would have been more accurately nostalgic way to get around campus, but I enjoyed taking my new habit to my old stomping grounds.

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Of course I had to snap a quick picture with the Alma Mater and on the Quad, which like the Union and much of campus, were as I remembered them. (My apologies if this one is upside down. WordPress and I can not agree on how to make it right side up on all devices. Agh!) At one point, we were noticing all the new hipster food trucks near the Beckman Institute and I commented that the only food truck in my day was the weird smelling silver truck outside Noyes Lab. When we walked past that spot moments later, Derald’s Catering Truck was still there, as if it had never moved, save to get a snazzy new paint job on one side!)

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This is the entrance to one of the new buildings on campus– the Carl Woese Institute of Genomic Biology. Besides the cutting edge science that goes on inside the building, the art of science is prominently featured throughout the building with temporary themed exhibits. These three sculptures outside the building show tRNA at three different stages.

imageGreen Street looked different, too, with many high rise buildings towering up over the familiar streetfront stores and restaurants. But IGB is probably one of the shortest new buildings on campus, built only a few stories high because of its proximity to the Morrow Plots– the oldest continuously planted experimental cornfield in the United States. And as all my fellow Illini friends know, you can’t throw shade on the corn! (OK, it’s a long video, but gives you the whole story of the Morrow Plots and why the Undergrad Library is underground. The song starts at around 8:30.)

I had a great visit and especially enjoyed my run down memory lane. Stay tuned for some pictures of me dressed like a grown up and being all professional and everything to find out why I was actually there!

 

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