Toxicity Troubles | The Aftermath of Cancer Treatment

March 7, 2017August 26, 2018 ~ Jamie ~ Leave a comment

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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!

Research Advocacy at the University of Illinois

May 7, 2016August 26, 2018 ~ Jamie ~ Leave a comment

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.

They 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.

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.

A Run Down Memory Lane

April 23, 2016August 26, 2018 ~ Jamie ~ 1 Comment

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.

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!)

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.

Green 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!

Summer Writing | AACR “How To” Series

September 24, 2015 ~ Jamie ~ Leave a comment

I saw a friend over the weekend who told me she was so happy I’m posting on the blog again. (Hi, Julie!) I have to admit to being a bit of a blog slacker this summer. Somehow, I’d think an eight year old and an eleven year old would be easier than toddlers– they can do so much on their own now, it seems like there should be less for me to do, no? I know all of you parents just a few years ahead of me already know this, but the activities ramped up like crazy this summer and I felt like I was going from one thing to another all summer long! Things like thinking and writing (and showering– the pool counts, right?) kind of took a backseat.

I know that I didn’t post here over the summer, but that’s not to say that I wasn’t doing anything. The bookends to my summer were grant review sessions, one of which required quite a bit more prep than the Department of Defense Breast Cancer Research Program study sections I’ve done before. I spent some time chatting with an early career researcher who has some super exciting ideas, and I’m getting a little closer to figuring out what I want to be when I grow up and how to get there.

One of the writing projects I worked on was for part of a how-to series that the American Association for Cancer Research has on their Advocacy page. I was invited to write a “How To Share Your Story” post for them, and it was such an honor to have my writing featured by such a prestigious organization. For me, seeing my story featured on their advocacy page felt a bit like how I imagine a Broadway star feels seeing their name in lights! I explained a bit about why I started this blog and how it’s changed in the almost three years (gracious, time flies!) since I was first diagnosed with breast cancer. As it’s a how-to series, I also gave a few pointers to anyone interested in sharing their own story. The quick summary: if you don’t want to go the GoDaddy route and pay for a site, there are a lot of free options with varying privacy settings and they’re all pretty easy. Think about your audience when you write, and be yourself. If you want the more detailed version, head over and read the whole thing on the AACR site.

And stay tuned, as my other summer projects go live, I’ll be sure to fill you in! Happy fall, all!

AACR Annual Meeting Report #2: The Poster Session

May 5, 2015 ~ Jamie ~ Leave a comment

IMG_2462.2015-04-20_133455 While a very few people are asked to give talks at AACR each year, the vast majority of the science presented at the conference is done by the person who actually does all the work– the graduate student or post doc– at a poster session. It’s kind of like a grown-up science fair, but without all the baking soda and vinegar volcanoes. Literally thousands of people put up a poster on a board for four hours, talk to other scientists about their work, and then take it down so several more thousand people can start all over again in the afternoon. What makes a poster session so great is that you have the opportunity to actually talk to the investigator, to interact, ask questions, make connections. These are great opportunities for beginning collaborations between scientists. During two of these sessions, the advocates had a row to put up our own posters. I would love to see us be able to mix in more with the scientific posters to perhaps get a little better traffic, but it was still a tremendous opportunity to present a poster at such a big meeting.

The poster I presented was a true collaborative effort, put together from ideas from the other ladies in the group at Georgetown. In truth, I was hoping to have an audience of scientists, to sell them on the virtues of including advocates in the research process. Thus, our poster described the credentials and the diversity of our group. The youngest in our group are in their mid-thirties, and we also have members in their seventies, and our members represent many different professions. I’m the most recent diagnosis, but we also have one (never diagnosed) high risk woman and a couple of ladies who are over twenty years out from their diagnosis. The women in our group have worked very hard to learn an incredible amount about breast cancer; many have attended the National Breast Cancer Coalition’s Project LEAD as well as other smaller educational activities. I wanted to emphasize that not only were were diverse and passionate, but that we are a group of educated advocates. But I knew that there was one thing that would be even more important to scientists than education: funding. In fact, quite a few in our group have served as full voting members as consumer reviewers for the Department of Defense Breast Cancer Research Program, and others have also reviewed for Komen, NCI, and state programs in Texas and New York. No one was too interested in reading our publication history, but they were all very impressed to see that members of our group have served on ASCO guideline review panels as well. Not only are we capable of understanding some of the science and representing a broader patient population, we have done it in some pretty high profile places!

Let me tell you friends, if you have to present a poster for four hours, this is the kind you want to have. Everyone who stopped by listened intently and was thoroughly impressed by the group that Ayesha, our fearless leader and scientific adviser, has built. Many advocates wanted to know how to start such a program in their community, and, as I’d hoped, the scientists were impressed (surprised, though impressed!) by the credentials our members possess.

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Since the conference was nearby in Philadelphia, I was lucky enough to have some of the ladies from the Georgetown group join me for the poster session. There were definitely times when we had more than one discussion going, so it was good to have extra people on hand to chat.But frankly, having five of us there was even a more impressive display of our commitment to learning about cancer and becoming more effective research advocates. And selfishly, I loved having the opportunity to get to know the ladies better– two hours a month in a meeting with a full agenda is not the quickest way to build a relationship!

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And since we’re talking relationships, it’s worth mentioning that we were lucky enough to have a few VIP scientists stop by our poster. Robert Clarke, PhD, DSc, is the Co-Director of the Breast Cancer Program at Lombardi, and Ayesha Shajahan-Haq, PhD is the Georgetown faculty member who first dreamed of a group like ours at Georgetown and then worked tirelessly to make it happen. She established the group four years ago, and we owe her a tremendous debt of gratitude. And perhaps even more exciting than presenting my poster in the advocate row at AACR is the fact that it now hangs proudly in the hall of The Research Building (such a fancy name for a place where people do research, no?) just outside of Robert Clarke’s lab. Perhaps hanging there, our poster will finally get a good audience of scientists, after all.

I was privileged to participate in AACR as a part of the Scientist <-> Survivor Program. Read about my SSP experience here.

AACR Annual Meeting Report #1: The Fun Stuff

April 30, 2015 ~ Jamie ~ 1 Comment

I have to say that heading back to AACR (the annual meeting for the American Association for Cancer Research) after all these years was a bit surreal. In the past, I always went with a group from Georgetown– students from other labs and of course at least a person or two from my own lab. Of course, we all had different priorities for the science we wanted to see, but I had a built in group for dinner or someone to sit with at the big plenary lectures. I’m good at being independent, but five days without built in friends was a little daunting.

And here is just part of the beauty of the Scientist <-> Survivor program run by the AACR: built in friends, and since they provided most of the meals, someone to eat with. There were roughly thirty cancer survivors or patient advocates in the program, and there were also a handful of scientists or oncologists who served as mentors to help guide us through the sheer volume of the conference.

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They divided us into smaller groups to work on a specific project, and I was thrilled to already “know” two of my fellow group members, as I’d bumped into them on the #bcsm twitter chats. (And the win goes to social media!) Each group was assigned an advocate mentor who’s been through the program before (this was the program’s seventeenth year!) and a scientist mentor who can explain any science-y questions and help group members find the sessions that are the most interesting for their point of view.

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They took super good care of us. As I mentioned, they fed us very well had lots of sessions set up just for the SSP program. Some of the ladies from the advocacy group at Georgetown came for a couple of days, and the lovely Karen, who took such great care of all the SSP participants, invited them to join a few of the sessions. Their absolute highlight was Dr. Carolyn Compton, who presented Cancer Mini Medical School. Not only did Dr. Compton teach them a lot about cancer, but she did it with such enthusiasm that no one even noticed she’d been presenting to us for over three hours and straight through dinner! (Except for maybe Dr. Ann Barker, who started the program seventeen years ago, and kept a watchful eye on the clock!)

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Besides Dr. Compton’s presentation, they had scientists lined up to speak to us in some of the most exciting areas of cancer research. Not only were these scientists brilliant, they were excellent communicators and were thrilled to share their passion with the advocates. We learned from the experts about circulating tumor cells and the possible future of liquid biopsies, big data– the accumulation of petabytes (I don’t know, it’s a LOT) of data from the sequencing of tumor genomes, and harnessing the immune system to fight cancer.

As a scientist, I went to these conferences and attended lots of sessions, talking to lots of scientists about their work. As an advocate with the SSP program, I quickly found myself torn between a speaker or potentially interesting poster and a special SSP session or working group meeting. Carlos Arteaga won out over the first hour of mini med school (I do have a cancer degree, after all) but I’m still a little disappointed I missed hearing Bert Vogelstein’s talk. Yet, I realized that most scientists are really looking at everyone else’s science for a new way to look at their own research. Maybe they’re looking for the technique that will get them over the impasse they’ve encountered, or they’re looking for a new collaboration. I wasn’t looking for a new technique, but a collaboration? Maybe. So I made sure to invest my time in relationships this year at AACR.

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And so I met a lot of people for coffee, which means I drank a LOT of coffee. (Which, given the 7am sessions and the receptions lasting until ten or later, I needed!) I was thrilled to find that the Reading Terminal Market was just across the street from the convention center. I had more than a couple cups of coffee (brewed on site!) and hand made caramel doughnuts while I chatted with friends, old and new. I got to know the ladies who came up from the Georgetown group so much better, and I was thrilled to catch up with my first graduate mentor, talking kids– dance classes, gymnastics, and what they want to be when they grow up. (Kids really are the universal language.) Maybe even better was the opportunity to meet a whole brand new set of people, a few new scientists, but also people involved in public policy, research advocacy, health and wellness advocacy, fundraising, science writing, and I even met an editor of a brand new scientific journal. It was great to connect with the other advocates, hearing their stories, not just about their cancer, but about what they’ve done since being diagnosed. I was so impressed with how the non-advocate types I met– journalists, policy people, and even scientists– were genuinely interested in finding ways to incorporate the advocate’s perspective in their work. IMG_2487.2015-04-22_011131

At the end of the day, I made a lot of new friends, collected a big stack of business cards, and even got a fancy certificate! Stay tuned for the poster update and a little summary of some of the science I saw, too. It was a jam packed five days, and I couldn’t possibly get everything into a single post!

Field Trip #2 | AACR Annual Meeting in Philadelphia

April 15, 2015 ~ Jamie ~ Leave a comment

Back in the day, when I headed in to the lab at Georgetown, AACR was the meeting to go to. It’s the annual meeting of the American Association for Cancer Research and it’s a huge meeting where scientists present their data. Ideas are shared, collaborations are built, relationships are made. And since I went to meetings in New Orleans and San Francisco, some very delicious food was eaten! I haven’t been in years– since graduate school. AACR is working to increase the role of patient advocates in the scientific process, and so they sponsor the Survivor<->Scientist Program. It gives a cancer survivor the opportunity to attend the meeting, getting to know other advocates and gaining the benefit of a scientist mentor to help make the meeting a little easier to understand.

This year, I am honored to be a part of this program on behalf of the group at Georgetown. Each SSP advocate is required to present a poster at the meeting. It’s sort of like a grown up science fair where thousands of researchers stand by huge posters of their work. In addition to being able to see talks by some of the greatest minds in cancer research, I’ll be able to peruse posters of the latest work going on in labs around the country and across the world. And for a four hour time slot on Monday morning, I’ll be able to share my poster with all of them. (Or at least those who wander by!) I worked with the ladies in the group at Georgetown to come up with a poster summarizing the role of our research advocacy group at Georgetown. Just like those dreaded group projects from high school, working with so many had its struggles– technology, waiting on information, trying to get all those ideas in! But not only am I happy that it’s done, I really do think it’s better for all the input of the group. They had some great ideas and I think the finished product will represent the group well.

I hope I’ll get to see some exciting research. I’m looking forward to meeting so many new advocates as a part of the SSP program, and I’m hoping I might run into a few familiar faces while I’m there. A few of the other ladies from Georgetown will be joining me for the poster session, and above all, I hope that we will have the opportunity to broaden the perspective of research advocacy in the cancer research community.

So now just a few things left to do before I leave… I’ll pick up the poster tomorrow. Business cards are ready to go. Fingers crossed that Sam Torrey managed to repair the shoes my dog chewed up (oh, the horror!) so they can get packed along with everything else. And then I’ll need to do a little cooking so that Clay can single parent it and still do a little of his own work, too. You’d better believe I’ll appreciate a few days off of constantly making those kids food!

And if you happen to be one of my science friends or one of my advocate friends and will be at AACR, let’s get in touch! My poster session is Monday morning, add it to your itinerary!