Category Archives: Survivor

Ten Things Breast Cancer Taught Me

10 ten things breast cancer taught me run lipstick chemo

Three years ago, I went from being a scientist and stay at home mom to a breast cancer patient in what seemed like a heartbeat. Chemo and a double mastectomy with reconstruction have taught me a few things that doctors never could. If I could go back three years, this is what I’d tell newly-diagnosed me…

  1. You will get over your modesty very quickly. I’ve never been part of a flash mob, but I’ve definitely flashed enough people to constitute a mob! Best estimates are that I’ve flashed well over 100 people since I was diagnosed. (Yes, I counted.) My body went through so many changes during my treatment for me to share with professionals and curious friends alike. There was the port– the weird alien-like device implanted under my skin to deliver my chemo meds, my mastectomy scars and drains, final implants and even my first tattoos– trompe l’oeil nipples!
  2. You will be in awe of how much you are loved. Your family, close friends, friends you haven’t seen in years, people you don’t even know will rally to support you in ways you could never imagine. They’ll bring you meals and watch your kids.You’ll return home to find cupcakes and magazines with thoughtful notes on your doorstep. Your days will be filled with coffee dates, and your friends will fight for the opportunity to join you at a four hour chemo appointment. Your out of state mom will send you a fabulous pair of flats to wear to chemo because she knows your love language is shoes. You will be overwhelmed with gratitude.
  3. You will see breast cancer everywhere you look. Remember when you were pregnant and it seemed like every woman you saw was pregnant, too? Especially if you share my extreme misfortune and are diagnosed in October amidst breast cancer awareness month, you will see pink ribbons everywhere. At the grocery store, they’ll ask if you want to round up to donate for breast cancer. You will fight the urge to tell them that you gave at the office. Or that you’re giving two breasts and a full head of hair. You’ll keep your forty-two cents, thank you very much. Instead, you’ll probably just smile and say, “Thanks, not today.”
  4. You will learn that immediate reconstruction is not immediate. I remember thinking how great it was that surgeons could completely reconstruct a woman’s breasts at the time of a mastectomy. I didn’t realize that “immediate reconstruction” actually means “starts at time of mastectomy and finishes with at least one more surgery sometime in the next year or so.”
  5. You will become obsessed with other women’s breasts. Once you’ve had a breast surgery or two, you kind of forget what normal breasts look like. What you see in the mirror is not necessarily bad, in fact it may be great. But it’s not normal. You will begin to examine other women to see how your breasts compare to theirs. (You will hope they don’t notice this.)
  6. You will talk about things like drains, mouth sores and nipple tattoos all the time and in the strangest places. Like new moms form an instant bond discussing the trials and triumphs of new motherhood, you have an immediate connection with anyone who’s been through a breast cancer diagnosis. You will also have these chats with everyone from your neighbor to your dental hygienist to an elderly stranger at Starbucks, because when you’re bald, these kind of things just come up.
  7. You’ll wish you had more pictures. No, really. Nothing reminds you of how far you’ve come than seeing where you started and where you’ve been. Plus, pictures smiling with your kiddos, spouse, or friends are a great reminder of how much you’re loved.
  8. You will find that you didn’t realize how important breasts really are, even if you’re done using them to feed babies. Your surgeon will tell you early on that you won’t have any sensation and you will nod, thinking of nothing but getting rid of the cancer. You won’t realize the significance of losing sensation. Not so bad not to feel the needles of the tattoo artist recreating your nipple. Sometimes devastating not to feel the gentle touch of a husband’s hand or a child’s nuzzle.
  9. You won’t need to wear a bra! You may think you will anyway, but since it’s tough to find one that fits, you will likely get used to going braless pretty quickly. Your BFF will probably insist that you try on every strapless and backless top that you see when you’re shopping “because you can.” (And you will totally rock them!)
  10. You may never again have “just a headache.” Every little ache and pain will make you think your cancer is back. Hip pain? Cancer. Menstrual cycle two days short? Cancer. Forehead pimple? Obviously cancer. BUT, you will get used to it. You will be surprised when you go an entire day without thinking about cancer, or when you forget to mention to a new doctor that your nipples aren’t real. Yes, you will be different, but you will get used to the person that you are.

The most sobering thing I learned is that roughly 30% of women diagnosed with early stage breast cancer will develop a recurrence– metastatic disease– that will ultimately claim their lives. While women with breast cancer are living longer and stronger, 108 women still die of breast cancer EVERY. SINGLE. DAY. The patient in me wants you to understand the personal side of the disease, but the scientist in me wants you to know that women with metastatic disease are depending on the breakthroughs that medical research provides to keep their lives from being cut tragically short.

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Summer Writing | Women’s Running Magazine

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I can hardly call it writing, but the next summer project on my list just showed up on newsstands! The first thing I did when I got a request this summer from Women’s Running magazine was call Sally to make sure that I was right– this is a legit magazine! Like one you can buy in stores and everything! They asked to feature me in their “Bloggers on the Run” series for October. Because breast cancer. Ironically, they took the text from some interview questions they asked me, and there is no mention of breast cancer in the piece! But since it’s sprinkled in between pictures of women showing off their pink running gear and pages of ads featuring pink ribbons, I’m guessing anyone who’s interested will make the assumption. I didn’t really get to share anything new or shocking, but it was fun to see my face (on a bald head, no less!) in a running magazine (who’d have ever guessed?!?) and perhaps it will give a runner facing chemo the confidence to keep on running. Head to your newsstands and check it out or read it here! (I picked up my copy at Barnes and Noble, since the selection at my local drugstore was too small to carry anything not related to home decorating or fashion and makeup!)

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Summer Writing | AACR “How To” Series

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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!

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Road Trippin’ | Seatbelts and Mastectomies

imageSo it turns out that seatbelts and mastectomies don’t always mix well. A couple of years ago, fresh off my mastectomy, I found this little gem at an auto parts store and found that it really did help me be more comfortable. It’s hard to believe that it’s been over two years since that discovery. Since that surgery. I’d hoped I might “grow out of it,” but I still have some nerve issues that make a seatbelt cutting between my breasts (especially on the driver side) irritating. It’s not that big of a deal driving around town, though I find that I pull the seatbelt away from my chest instinctively at this point most of the time.

As we headed out on our first long road trip this summer, I knew comfort was going to be key, so I put on a loose comfy tee and a pair of running capris, and we set out. I quickly figured out that a loose tshirt and a seatbelt, even with its cushioning, was a bad combination for me. By the time it was Clay’s turn to drive, I thought I was going to come out of my skin. It took nearly my whole shift as passenger to get comfortable again, and then I had to shift back to the driver’s seat.

Thankfully I had taken along a sports bra or two in case I wanted to get in a run (ha! It was WAY too hot!) and so I put that on for the ride home. The difference was HUGE! I don’t have to go for a lot of support, but the way that a sports bra creates sort or a flat surface keeps the seatbelt from getting between my breasts and irritating me.  While I still pulled the seatbelt away reflexively, I was actually comfortable even when didn’t.  I’m not convinced that I need a sports for actual sports (though it feels too weird not to wear one!) but apparently, they’re my new must have for road trips!

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On Remembering and Carrying On | September 11

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I wanted to go for a run downtown yesterday. Really, I wanted to park near the Pentagon and run across the Memorial Bridge onto the mall. But, figuring that security around the Pentagon would be crazy, I decided that wouldn’t be the best plan. My second choice was to park in Rosslyn and do a similar route coming back through Georgetown and the Key Bridge. But since I couldn’t find anyone who could spend the morning with me, and frankly, I had other things I should be doing, too, I settled and headed out on my normal neighborhood loop.

I’m sure there has been a cloudy September 11 since 2001. Yet I feel like every year, I look up to a bright blue, cloudless sky and think how amazing it is that every year, the sky looks just the same. In 2001, I headed into the lab super early every morning, so by the time the first plane hit the World Trade Center, I was finished with my morning’s work in the tissue culture room and came out to see the image on my labmate’s computer screen.  After a brief chat, we carried on with our work, but gathered back around the computer as word filtered down the halls that the second tower had been hit. I fielded the call of a friend who was supposed to be relaxing after defending her thesis the day before but was instead frantically looking for the work number of a friend who worked in the World Trade Center.  Finally, I remember running across the hall to stand next to the desk that would eventually be mine to look out the window into that crystal blue sky, watching smoke rise from the Pentagon before we were eventually sent home.

Somehow, every year on September 11, I feel compelled to run. Because I can. This year I wanted to go downtown, run past the same skyline I saw looking out that window. I wanted to run across the Key Bridge, remembering the fully armed National Guard troops who welcomed me across for weeks as our city struggled to return to normal. I was a little disappointed to “just” be running my normal loop. Yet as I ran the lovely wooded trail along the interstate, I could see the flags placed on the overpasses every year by the Arlington County Fire Department in memory of that day.  I saw the cherry blossom-themed sign pointing towards downtown.  Crossing over the interstate as I headed home, I could hear the hum of traffic and the rumble as a metro train passed under me.  The sky and the flag, so beautiful. The traffic, so blissfully normal. The day will not be forgotten, yet we have carried on.

And as for that run downtown, there’s always next year. (At which point my St. Louis Cardinals-loving eight year old would tell me I sound like a Cubs fan!)

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The Great Pixie Grow Out Saga: Two Years and Counting

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It’s a shocking before and after, no? It’s been forever since we’ve had a hair post.  I got a haircut this week, but wasn’t hoping for any dramatic change as I continue to work  through the grow out process. (Don’t you love the red lipstick, though? It’s my Nars Cruella lip pencil that was part of my birthday gift from Sephora!) It’s hard to remember, but this was my hair two years ago:

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Super short and white blond. I actually quite love that look.  Then as it grew back in, it got so much darker. I assume that it came back the color my hair always was, but my hair has always gotten lighter from the sun, and the new hair hadn’t been in the sun at all.

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So I quite like it that way, too, though it was awfully dark. (And look how nice my fingernails look. I really should polish them more.) Sorry no lovely professional photos of my new hair, but Dragan and I agree that it’s getting back to its old color.

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The ends are getting lighter, he commented it looked like we had done an ombre color treatment on it! I’m still working on getting it styled the way I want it– it’s so hard to work with hair in this in between length. Apparently, my hair “wants to behave” and adopt a round newscaster-y coif, so I’m working with products to give it a more disheveled, edgy look. So I’m currently on the lookout for some Redken Fashion Waves 07– a sea salt/surf spray to texturize it. Why can’t everything be available on Amazon prime? (And for the record, I took that last picture at a very long stoplight in Georgetown. I wanted to get a pic of the hair before it lost the “just left the salon” look!)

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Gettin’ My Groove Back | Running After Cancer

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I managed to run all through chemo. I didn’t go as fast, or as far, or nearly as frequently as when I was in top shape, but I had cancer. So I was winning. Then surgeries started creeping in, and I LOVE my plastic surgeon, but he’s a stickler about limiting activity after surgery. The six week ban on anything that causes you to bounce or break into a sweat probably isn’t necessary, but he wants to ensure the best outcome possible. When it comes to plastic surgery, I’m all for a good outcome, so I obliged.

We all know that breaking a habit is far easier than starting a new one, so at the end of each six-week doctor imposed hiatus, it took a while to get back into the groove of a regular morning run. And then as soon as I’d gotten back in the swing of things, I’d need another surgery. Training interrupted by surgery has kind of been my go-to excuse for the last two years. But just this week I realized that my most recent surgery was in June of last year. That means I’m almost a year surgery-free! Which is awesome. But also, that fact makes my go-to, perfectly respectable excuse completely pathetic. There’s no reason I should be sleeping in far more days than I’m getting out for a run.

Enter the plan to get back my groove. It is a multi-pronged approach:

  • Run with a friend: Accountability helps. And so does companionship. Last week I made Emma Clare run with me before Turner’s baseball game. I have a neighborhood friend who I run with before the kids head to school– our plan is twice a week. (When life doesn’t get in the way.) And then Sally and I have decided to resurrect our chemo runs, meeting in Old Town once a week or after a shopping outing, and have even added a third friend to that mix.
  • Make a goal: I’m completely out if I don’t set myself a goal. But with a (reasonable) goal, I’m a fierce competitor. So I’ve got a couple of friends in on it, and we’re doing a minimum of three runs a week and reporting back. I kind of wanted a mileage goal for myself, too. I decided on a May marathon– not that I’m going to run a marathon at the end of May (ha!) but that I’ll run a total of 26.2 miles in the month of May.  I’m off to a pretty strong start, though, so I am thinking I might need to up that goal…
  • Power through: This is the hardest. The weather yesterday morning was perfect for a run, the trails were packed, and the trees were lovely. And my run was abysmal. I’m not fast, so it doesn’t bother me to get passed. But yesterday, I got passed by a guy running in a cotton tee and dockers. (Hard to tell myself that he passed me because he puts in a lot of miles when he’s running in a pair of chinos.) Also, I got passed by a woman at least twenty years my senior, who, based on the fact that both knees were taped and she had a terrible gait, was running in a significant amount of pain. Hard to keep going after grandma limps by. The one lucky break? One of the top candidates for neighborhood gazelle joined the path quite a bit ahead of me, so she can keep saying with conviction that she’s sure I’m not that much slower than her. Nevertheless, I finished the run and was determined today would be a better day.  I had actually set up two running dates. First one got cancelled last minute because my partner’s dog hid one of her shoes. She never did find it! Second one cancelled due to that partner’s stomach bug. (Apparently, it’s not a great thing to be my running partner!) Thankfully, though, I powered through and went out solo. The music was great (thanks, Spotify!) and I spent some time thinking through a phone call I have later today.

So after a few false starts, I managed to make it a respectable week. What about you– how do you get your groove back and restart a cast off habit?

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AACR Annual Meeting Report #1: The Fun Stuff

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!

 

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Field Trip #2 | AACR Annual Meeting in Philadelphia

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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!

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Field Trip: FDA Breast Cancer Patient Focused Drug Development

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I think it all the time.  I am so happy to live where I do.  Last week, after running a couple of errands, I headed up to spend the afternoon at the FDA White Oak campus in Silver Spring, MD. `I didn’t have to hop on a plane, get a hotel, and try to arrange my family’s schedule so that I could be gone for several days.  I just headed over after stopping at Tyson’s. It’s a brand new campus and everything is so fancy– much different than my visits to the FDA buildings that were on the NIH campus when Clay worked there.  The FDA is conducting meetings over a five year period on different disease sites, inviting patients to influence the drug development process.  I was there for the breast cancer meeting (obviously!) along with roughly fifteen to twenty other patients and patient advocates.  The rest of the audience was made up of academics and pharmaceutical representatives who were eager to hear our comments.  (They were not permitted to participate in the discussion, they were just there to listen.)
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I thought the meeting was well organized and well run, and the FDA staff and reviewers listened very attentively and asked thoughtful questions.  Even when the discussion started to get off course, they managed to respectfully and gently guide us back– and that’s no small feat!  I had three main takeaways from this meeting.  First, I continue to be in awe of the passion and energy of the metastatic breast cancer community.  I sat with several ladies from the Metastatic Breast Cancer Network and the Metastatic Breast Cancer Alliance.  It makes sense that the women who were chosen to be on the panels were mostly metastatic patients– they’ve had far more treatments, so of course they’ve had to deal with more side effects.  Many of these ladies talked about overwhelming fatigue, pain, and the stress of trying to make sure they’ve scheduled their “life” to fit within their two or three week chemo cycles.Their cancer cards are still shiny– though be it a bit worn– and no one would call them selfish for wanting to stay at home– either to feel sorry for themselves, or just to spend as much time as possible with their families.  And yet they traveled from Chicago, New York City, Texas, California– all to share their stories, hoping they will make a difference, if not for themselves, for those yet to be diagnosed with breast cancer.  They spoke with candor about things most people would rather hide– diarrhea, depression, sexual intimacy.  They shared the joys of being without evidence of disease after treatment for multiple metastatic lesions, and they shared the disappointment of recent disease progression. While I know one person’s story is always just one person’s story, I was reminded of the power of an individual’s personal narrative.

The other two things that struck me were two of the questions posed by the FDA panel.  They wanted to know from the patients– What would our dream drug look like? Um, one pill, no side effects, totally and instantly curative.  OK, I know that’s not what they were going for!  And that’s not what anyone said, either. The most poignant answer came from Shirley Mertz, from the Metastatic Breast Cancer Network.  I’m totally paraphrasing here, (apologies to Shirley if I botch it!) but she pointed out the need for more endpoints in new drug trials.  Most trials for metastatic disease look at tumor shrinkage as an endpoint.  (Makes sense, it seems like a shrinking tumor is a good thing.) But she encouraged the FDA to consider no new metastatic lesions– tumors– as an endpoint.  She said most metastatic patients feel like they can handle their current level of tumor burden, what they all fear is the spread to new organ sites.  Her dream drug would stop the tumors in place, prevent them from going anywhere new. She eloquently presented a perspective (and idea) that I found very interesting. I really love how excited she was to share her ideas with the FDA– she wants them to change the way they do the trials and she wasn’t afraid to tell them! (And she did it with the biggest smile, you could tell she reveled at the opportunity!)

The final question that impressed me: What’s’ your deal breaker? I didn’t love that the panelist started talking about hair loss, as if there were a lot of  women who A) didn’t know that chemo causes hair loss and B) wouldn’t take the needed chemo treatment if they’d known. ??? But once I got past that, I thought it was a brilliant question.  The FDA sees a list of potential side effects for every drug, but a patient’s perspectives on how to judge those side effects could make a difference in how they look at the applications. For the most part, the discussion was pretty clearly split.  First treatment to stages I-III: there are no deal breakers.  Theses women see the treatment as potentially curative and so are willing to endure most anything for a limited time to avoid feeling later like they didn’t do enough.  Once you move on to long term hormonal treatment (anti-estrogen, aromatase inhibitor, ovarian suppression), it gets tougher, this is five or ten years of a drug for a women with no evidence of metastatic disease. Young women in particular often struggle with the side effects– early menopause, sexual side effects, depression, weight gain. For some women, these side effects are so extreme that they become deal breakers and they stop treatment.  Metastatic disease is obviously a different ballgame entirely.  The Metastatic Breast Cancer Network describes the routine simply as “Scan, Treat, Repeat.” For the most part, this cycle is repeated every three months.  Women who are fortunate to live longer than the average three years after metastatic diagnosis have often undergone numerous treatment regimens. They stay on one until their disease progresses or they are unable to cope with the side effects, and then their doctors search for yet another option.  Their deal breakers are very different, and they seem to fall into two groups. The young mothers I’ve encountered with metastatic disease seem to be willing to do just about anything, to endure any side effect that is not actively threatening to claim their life before the cancer can.  They want one more day to see their babies grow up, to get to help their daughter buy a prom dress. They just want one more day, and they are willing to suffer any amount of pain to get it.  At some point, though, quality of life becomes a much larger argument. Many present, women who didn’t have little ones running around the house or children about to graduate from high school, spoke of their deal breakers– they were tired of all the side effects and would not choose a treatment that promised them little additional time at a great cost to their body.  One woman spoke about choosing a treatment that had a more convenient dosing schedule– an injection once a month over biweekly, three hour infusions.  Sadly, the financial cost of treatment was mentioned several times, one women adding that she wouldn’t want a drug that affected her so adversely that she couldn’t keep her job– and therefore her health insurance. They emphasized that quality of life could be more important than length of life in the decision making process, and while rough side effects shouldn’t keep a drug off the market, we shouldn’t settle for drugs without considering their toxicities.

I won’t say that I think this afternoon solved all the problems that exist in the treatment of breast cancer. I wasn’t sure what to expect, and frankly, didn’t expect much. I thought it would probably be the FDA’s way of checking off a box– yes, we talked to breast cancer patients. Done. I know that cancer drugs are still going to have some pretty rotten side effects, and my talking about them won’t make them disappear. Yet I feel like the FDA panelists were truly listening, and that our discussions might influence what level of side effects they find acceptable. Perhaps they will consider adding new trial endpoints, or they will require more data on dosing to stop the “more is better” philosophy that is common in cancer treatment. The meeting is over, but the public docket is open for comments until June 2, at which time they will be summarized for the permanent record. If you’d like to add your comments, please head to their page and do so. (There are some specific questions that they want patients to address, found about halfway down the page under the “Public Meeting Information” heading. You can add your comments by clicking the blue “comment now” button at the top right of the page.)

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