Around the Web: Overdue Edition

Every few weeks, Quinn and I go to the Scottsdale Public Library, which has a superb children's section. There are painted moats on the floor and real castle walls and a drawbridge that leads the way into a reading nook. There are legos for building, a giant stuffed dragon for riding, puppets and a stage for creating stories, and age-appropriate games housed on iPad learning centers. It's a wonderful space. But still, we forget (and by "we," I mean "I") to return in time to get our books in when they're due. I end up logging into my account online and renewing our checked-out books to avoid a late fee and a 15-minute drive.

{We have always loved reading together. Sept. 2012}

Much like our beloved library books, this "Around the Web" series is long overdue for a renewal. Or at least an update, since research is (by all accounts I can find) still happening. Progress, though sometimes achingly slow, is being made.

I don't even know if you guys come here for the research I sometimes post, but I think some of you might. I also think it's important (for my own sanity, if nothing else) to take note of the advances being made on the research side of things. To laud the glimmers of hope out there. Some of them are starting to shine pretty brightly.

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At the conference I attended in New Jersey a couple of weeks ago, I wondered if I was somewhat of an imposter being at this summit for Online Health Advocates. Was I one? Could I fill those shoes? I mentioned once or twice that I didn't feel so much like an advocate as I did a storyteller, to which a couple of other attendees told me, "Nonsense. That is how we advocate, how we connect with people, through our stories."

Stepping into the role of advocate a bit more fully, for me, means keeping up a little better with the science side of things. (As long as it's not organic chemistry.) I used to be a lobbyist, in my former life back in DC. Yes, stories are how we connect, but when you're sitting in a wonk's office you also better know a little something about the guts of your subject matter. Where is progress being made? What research is most promising? How is it being funded? How can Congress help? I'm exploring a few opportunities that I hope will help me dive even deeper into this arena, and in that vein I'll be brushing the dust off my shoulders to participate in the National Breast Cancer Coalition's annual lobby day before Congress when I'm in DC next week.

{Photo: Mike Boening Photography}

After I walk 39.3 miles.

In the meantime I'm wondering if this is the right format -- or platform even -- for these posts on the research I cull from around the web. What do you think? Keep them here? Or would you subscribe to a newsletter if I promised to keep up with it? Please let me know what you think. And for now, here's the best of what I've found over the past month. (Like I said, overdue!)

Embracing My Inner Pollyanna

via Ann Silberman

"Some cases of metastatic breast cancer are already cured, Sledge said: in the adjuvant setting, where it is micrometastatic disease but still metastatic; and with oligometastatic breast cancer, as the CALOR (Chemotherapy for Isolated Locoregional Recurrence of Breast Cancer) trial has shown recently (Aebi et al. Lancet Oncology 2014;2:156-163).

'So the question is not why can't we cure, but rather why don't we cure more?' he said."

Because Scientists are Doing Things Like This

"Investigators from Massachusetts General Hospital (MGH) and the Harvard Stem Cell Institute have developed an imageable mouse model of brain-metastatic breast cancer and shown the potential of a stem-cell-based therapy to eliminate metastatic cells from the brain and prolong survival. The study published online in the journal Brain also describes a strategy of preventing the potential negative consequences of stem cell therapy.

"Metastatic brain tumors - often from lung, breast or skin cancers - are the most commonly observed tumors within the brain and account for about 30 percent of advanced breast cancer metastases," says Khalid Shah, MS, PhD, director of the Molecular Neurotherapy and Imaging Laboratory in the MGH Departments of Radiology and Neurology, who led the study. "Our results are the first to provide insight into ways of targeting brain metastases with stem-cell-directed molecules that specifically induce the death of tumor cells and then eliminating the therapeutic stem cells.""

Scientists are SO FREAKING COOL.

A Switch to Tame Triple-Negative Breast Cancer?

"Australian researchers have found that so-called 'triple-negative breast cancers'1 are two distinct diseases that likely originate from different cell types. This helps explain why survival prospects for women with the diagnosis tend to be either very good or very bad.

The Sydney-based research team has found a gene that drives the aggressive disease, and hopes to find a way to 'switch it off'."

Promising Outcomes from Early Phase Trials for Metastatic Triple Negative BC

"The high mutation rate of triple-negative breast cancer, which can produce neoantigens that induce an immune response, makes it a candidate for cancer immunotherapy, in particular PD-L1-targeted therapies. In addition, patients with triple-negative breast cancer with high levels of tumor-infiltrating lymphocytes (TILs), have improved outcomes, Emens said."

And for Her-2+ Metastatic Breast Cancers, As Well

""We also saw responses in these women, particularly in those that were anthracycline-naïve," continued LoRusso. "Given that many of the patients had disease that had progressed following treatment with trastuzumab [Herceptin], T-DM1 [Kadcyla], and pertuzumab [Perjeta], these results are encouraging and led to the ongoing randomized, phase II HERMIONE clinical trial, which is testing whether MM-302 plus trastuzumab is more effective than chemotherapy of physician's choice plus trastuzumab for locally advanced/metastatic, HER2-positive breast cancer.

"If the results of HERMIONE are positive, MM-302 may provide another therapeutic option for women with HER2-positive breast cancer," LoRusso added."

Plus a New Signaling Pathway Discovered in Her-2+ Breast Cancer Cells

THIS: "One of the most promising ideas in cancer treatment is to apply a lesson learned in the fight against AIDS (Acquired Immune Deficiency Syndrome): simultaneously attacking a pathological process at different points of weakness can, in some cases, deal a knock-out blow. Just as the so-called AIDS "cocktail" directs multiple agents against multiple targets, so too might future anti-cancer cocktails be directed at multiple, highly specific targets in known cancer pathways."

Don't Worry, Scientists are Finding Ways to Halt Hormone-Driven Cancer, Too

"An experimental drug rapidly shrinks most tumors in a mouse model of human breast cancer, researchers report in the Proceedings of the National Academy of Sciences. When mice were treated with the experimental drug, BHPI, “the tumors immediately stopped growing and began shrinking rapidly,” said University of Illinois biochemistry professor and senior author David Shapiro. “In just 10 days, 48 out of the 52 tumors stopped growing, and most shrank 30 to 50 percent.”"

There's a Lot of Buzz About the Future of "Liquid Biopsies"

"But eventually, we’ll begin to match specific clinical outcomes, such as therapy response, with the circulating DNA that is sequenced. We’re also working on building databases that will show which cancer drugs work most effectively with which cancers at a genetic level. We’re moving forward with this research at an exciting pace; in the next five to ten years, it’s going to make a tremendous difference in how we practice medicine."

The Psychology of Living with Advanced Cancer

“We’re all terminal,” Bellizzi says. “We’re all dying with each passing day, and there’s no way to get around that. I have found that starting my day with that thought helps me change my priorities and perspective. I try to never forget to tell people I love that I love them. If I get in a fight with a family member, I make sure to fix that before I go to bed. We don’t know what’s around the corner. I think it helps us live that way by reminding ourselves that it’s not cancer but life that’s a terminal condition.”

You Can't Judge a Book by Its Cover

Although I haven't seen the movie, I just finished reading / listening to Unbroken: A World War II Story of Survival, Resilience, and Redemption by Laura Hillenbrand. (Side note: did you know you can switch between the two -- reading and listening -- and Kindle/Audible will sync with one another for some books?! This isn't sponsored, just a tip that blew me away and made finishing this book infinitely easier for me because I could listen while I hiked or drove because I haven't had much time to sit lately, so I thought I'd share.) The irony is I had treatment yesterday and have hardly left the couch today.

Unbroken is an epic tale of one man's life, from boyhood rebellion to Olympic runner to airman in World War II. In the war, his plane went down in the Pacific and he was stranded at sea for more than forty-five days on a disintegrating life raft. When he was "rescued," it was by Japanese, who put him in a variety of POW camps where he survived the unthinkable for more than two years. On the back cover blurb of the book, it says: "Unbroken is an unforgettable testament to the resilience of the human mind, body, and spirit. . ." 

My reading of such an incredible tale was timely, as I headed to a conference last weekend where I met dozens of people who are a further testament to the resilience of the human mind, body, and spirit (not to compare what we've been through to what our servicemen endured in WWII, but humanity in the face of hardship can be pretty incredible). The HealtheVoices 2015 Conference brought together more than sixty health bloggers from around the country, representing various conditions for which we advocate (and for most of us, live with): cancer, HIV, diabetes, cardiovascular disease, mental illness, Crohn's/colitis, and rheumatoid arthritis.

A photo posted by Jen Campisano (@jencampisano) on Apr 18, 2015 at 7:13pm PDT

This conference was, as far as I can tell, the first of its kind. It brought dozens of voices together to explore how to collaborate across our varying ailments, think about how to raise the volume on our advocacy efforts, and -- most importantly, I think -- discover ways to more effectively serve the patients and caregivers who turn to us for support.

The summit was sponsored by Janssen Biotech, Inc. in collaboration with Everyday Health, and I should point out that Janssen paid for my travel expenses for the summit. All thoughts and opinions expressed here are, of course, my own. 

I spent all day Friday traveling to the NYC area, where I was greeted by Ann Silberman of Breast Cancer? But Doctor. . . I Hate Pink! I've known Ann online for a couple of years, and I'm pretty sure she's the reason I got invited to this summit, so I was especially excited to meet her in person. And as Shakespeare said, “Though she be but little, she is fierce!”

There was a cocktail reception that evening followed by a dinner program in a windowed room overlooking the Hudson River and the New York skyline. It was an effort to focus on the speakers and not the view (seen here the next morning when I got up early to walk around a bit and soak it in).

Saturday kicked off with an inspiring and entertaining keynote by Dr. Zubin Damania (aka ZDoggMD), who told us we were part of the next wave of medicine, Medicine 3.0, if you will, in which medical information would be open and available to patients, relationships between providers and patients would exist like they did in the past, but would be more of a partnership and less of a paternalistic relationship, and that we, as online advocates, would be part of making that transition happen. He spoke to us about leaving his career as a doctor at Stanford (by way of some hilarious and avant-garde videos) to help open a membership-based (like a gym!) primary care clinic in Las Vegas that goes beyond traditional medicine by offering a range of services, including yoga and counseling.

Saturday was a whirlwind of breakout sessions on a range of topics aimed at making us better at what we do, including a session on legal issues in online advocacy that almost made me nostalgic for law school.

There was a little time for catching up with other attendees between sessions and during meals, and then we broke into smaller groups for dinner Saturday night, where I had the privilege of sitting next to the inspiring Chrisa Hickey, who writes about living with a son who was diagnosed with schizophrenia when he was just eleven years young. She has taken this challenge and turned it into a loving and safe online community of parents facing similar circumstances.

Like so many bloggers I met this weekend, she has been faced with the unthinkable, picked herself (and others) up from the doldrums, and put one foot in front of the other until life was bearable again. Resilience, indeed.

After dinner, I spoke with a man who was diagnosed with Stage 4 prostate cancer more than nine years ago and told he would probably die soon. He did not. I met a marine who was about to be deployed to Afghanistan when he got the terrible news that he was HIV positive. I spoke with another young mom who is sometimes debilitated due to her rheumatoid arthritis. Not one of these people looked sick. I don't look sick, either.

Here is a photo of those of us who were attending and write about breast cancer. Four of the five of us have been told we have metastases. Three of the five of us are in remission. I don't think any of us appear ill. (From left to right: Kathy-Ellen Kups, RN, Life with Breast Cancer; me; Vickie Young Wen, I Want More Than a Pink Ribbon; Ann Silberman; and Heather Lagemann, Invasive Duct Tales.

What I learned this weekend above and beyond how to be a better advocate, if I didn't know it already, was you never know what someone else might be going through. I looked around the room and realized that if we weren't all there together, I would never expect most of these people were facing any health hardships. You just never know. The old adage is so true: you can't judge a book by its cover. Also, never underestimate the resilience of the human spirit.

Why DO People Get Sick?

Where to start? What a week.

We flew up to northern California on Friday to visit Chris's mom, who's dealing with advanced stage Parkinson's Disease. Together with her doctors and full-time in-home care, Chris and his brother are trying to figure out a new balance of medicines to get her back to comfortable, if not fully mobile or independent.

On the flight, I spent some time trying to prepare Quinn for what to expect. "Grandma's sick, and she might not be able to play with you as much as normal. We have to give her lots of extra love and try to cheer her up, okay? And remember that Grandma is Daddy's mom, so he might be a little sad and need extra hugs, too, just like you would be sad if I got sick."

I almost hesitated on those last words, as if I haven't been sick nearly his whole life, but I didn't know how else to say it and, after all, with the exception of the chemo itself, I haven't felt sick or had any evidence of disease in nearly a year and a half.

Quinn nodded in understanding. "I would be so sad, Mom." Then he asked me, "Why do people get sick?"

"I don't know, buddy," I said. I held his hand for awhile.

Seeing my mother-in-law was tough. How had things progressed this quickly in just three months? As I gave her a hug good-night on Friday, I started crying.

"Hey," she said. "I didn't cry for you, you're not allowed to cry for me." She was right, so I straightened up.

"That's because you're a lot tougher than I am," I cracked.

We've had moments of pure brightness this weekend, too. A superbly talented friend of Chris's took our family photos in a field off Highway 12, surrounded by wineries and a glowing sunset. I've gotten to spend an inordinate amount of time in the kitchen, because apparently when the going gets tough, I get cooking. And Quinn has blown me away with his empathy and compassion.

One of the concerns my mother-in-law expressed was that she didn't want Quinn to see her this way, that maybe we shouldn't be here because she might scare him. So I asked him on Saturday if Grandma being sick scared him, and he looked at me like it was the strangest thing I'd ever said. "No, it makes me sad," he said. "I'm sad because Grandma doesn't feel better."

Of course he wouldn't be scared. He has no point of reference to know what any of this means, or have any way of knowing that some people don't get better once they get sick. Grandma could never be scary to him. She's just Grandma, after all, not a monster under his bed. Every morning, he asks if he can go in to her room to be with her, even if we have to say no because she's getting some rest. Every evening, to Quinn's delight, we have a picnic dinner in her room.

I'm so proud of his pure and enormous heart.

Don't Ignore Stage Four

As I do two out of every three Mondays, after dropping Quinn off at preschool this morning, I headed to my oncologist's office. I had chemo last Monday, so today I was due for lab work. The office is on the other side of town, about a half hour drive from our house even when there's no traffic. More and more, I find myself getting irritated that I still have to check in so often, even after nearly two years on this drug and mostly great blood work (even if I did just have a bloody nose, which are fairly common in my post-chemo-chemo world.)

It's a small thing, this having to check in and have blood drawn from my port every third Monday. Chemo is less of a small thing, but I can justify those visits. The drive is worth it because I'll be there for two to three hours. Plus, chemo is working. I can visit with a friend or catch up on my emails. Labs, on the other hand, take only ten or fifteen minutes, but I still spend an hour in the car.

And yet -- it is such a minor complaint in the grand scheme. Other women in my circle spent the holiday weekend having seizures or being hospitalized from complications of metastatic breast cancer. I have no right to feel irritated about an hour in the car for blood work.

{image source}

Today is the first Monday of the month, and there is a movement afoot to spread the word about what it means to live with metastatic breast cancer (MBC). And eventually, we hope, to get more research funding aimed at halting this disease. In my life, right now, living with MBC means feeling cruddy every third week while I recover from chemo. It means a lot of driving to and from the oncology center for labs and check-ups. It means bloody noses about once a week. And it still means scans every 3-4 months. But all of that is mostly manageable. (After all, I have good people around me to help.)

For many people with this disease, side effects and treatments and the cancer itself take a much harsher toll. And after everything we go through to extend our lives, only 1 in 5 of us will live five years after our initial Stage 4 diagnosis. It is such a harsh statistic that the American Cancer Society warns readers to skip ahead to the next page if they'd rather not see the statistics that they put in a chart much further down the webpage.

Despite these odds, I think I've made it abundantly clear that I find so many reasons to have hope. Hope I will be one who makes it way, way, way past the five-year mark. Hope that more and more people with MBC will start having outcomes more like mine, and that doctors start calling this a chronic rather than terminal illness. Hope that the next generation of women won't have to worry about breast cancer at all. Wouldn't that be nice?

If you want to help advance this cause, please consider writing your representatives in Congress, donating to groups like Metavivor (which only funds Stage 4 research), and spreading the word that there is more to breast cancer than early detection.

Meaning To Unite or Join Together

Over the weekend, close to seventy-five people showed up to practice yoga at an event my friend Jenn and I put together to raise funds for the Avon 39 Walk to End Breast Cancer. In addition to the donation-based yoga class, we held a silent auction, with donations from local artists, salon owners, yoga teachers, health coaches, and one of my favorite (non-local) wine makers. 

Jenn led us all in a beautiful flow emphasizing our prana, or life force. After all, we were there to celebrate life, to raise money that will fund research to extend people's lives and improve the quality of their lives, and help others live easier lives in the midst of a cancer diagnosis by providing meals, transportation, and treatment options. 

We were celebrating my clean scan from earlier in the month, too. I smiled with every breath and gave my little guy a kiss with every chaturanga. I am so fortunate.

{Quinn watching me practice}

In Sanskrit, yoga means "to unite" or "to join together." In practice, we often think of it as joining our breath and our movements, our minds and our bodies. But it is also about coming together as a community. About supporting each other and the world around us in little, meaningful ways. 

On Saturday, the roomful of us breathed together, moved together, sweated to some great music together and then ended the class with one of the most powerful experiences I've ever had in a yoga class. It was simple. All Jenn did was ask everyone to form a circle around me and send good energy my way. We all touched the shoulder of the person in front of us, or held hands with someone next to us, some of us praying, others of us thinking positive thoughts for healing and love and growth. We sat there for several minutes in sweaty, happy peace, and then, in tears, class was ended. 

{After class, with the incomparable Jenn Chiarelli and her daughter, Grace}

When all was said and done, we raised more than $2,000 for breast cancer research and support that day (our team is above $46,000 as of this writing). Almost equally as important, we raised our awareness of one another, of the struggles we all face, and how to ease that burden for each other just a bit, sometimes simply by holding one another's hands.

To everyone who came out to support me and this cause on Saturday, who donated your time, your art, your t-shirts, your space, or your goods or services: thank you. I can't thank you enough. I know I say it over and over, but I am so lucky. My heart is so full.

As I said on Saturday:

"Medicine is making huge strides these days, and I know chemo has saved my life.

But I also believe in this community, in the power of community. You all practicing next to me, or inviting my son for playdates when I can hardly get off the couch, or gifting me Reiki sessions because there is healing power in touch has absolutely bolstered me up over the past few years. I wholeheartedly believe I wouldn’t be where I am today if not for yoga, if not for this community, if not for all of you."