Clinical Trials: Special Stage IV Search Engine, a great book and more

See Metastatic Trial Search

 

Are you looking for a metastatic breast cancer clinical trial? A new search engine makes it easy to quickly identify trials appropriate to your situation. The Metastatic Trial Search , powered by BreastCancerTrials.org, also translates the trial descriptions into plain English.

Although I am not currently looking for a trial, I was curious to see what a search would yield. I filled out the required engine fields (only five). The results returned 180 possibilities. I quickly scanned through the listings–and I found a couple I will keep on my radar. Why not take a look? Just click here: Metastatic Trial Search

Another valuable resource is this book, Cancer Clinical Trials by Tomasz M. Beer, M.D.  and Larry W. Axmaker, Ed.D. I found this 160-page soft cover book at my local library. I was surprised, because I live in a small town and the selection of cancer books is limited. I also wondered if the authors would have enough material for a book-length manuscript. It turns out they did!

This is a great book–very easy to read and the reader can easily browse through the chapters to find the material of greatest interest to him or her. The book is divided  into four parts: Cancer and Cancer Treatment Basics, What Are Clinical Trials and How Are They Organized, Deciding Whether to Participate in a Clinical Trial, Medical Treatment of Cancer Now and in the Future.

Although I was familiar with some of the material, there was quite a lot I didn’t know. I knew some of the history behind the evolution of the clinical trial system, but I came away knowing a lot more. I also appreciated the chapter on drugs currently in testing. Categories of chemotherapy drugs include antimetabolites, alkylating agents, DNA cross-linking derivatives, antitumor antibiotics, miotic inhibitors. Hormonal agents are also covered: testosterone and estrogen lowering drugs, hormone blocking drugs and testosterone conversion/activation blockers. But wait, there’s more: small-molecule targeted drugs, monoclonal antibodies, immunotherapy, differentiation therapy and gene therapy. Obviously, not all of these drugs have application to metastatic breast cancer but I appreciated the clear explanation of what they are and how they work.

You can read an excerpt from “Cancer Clinical Trials: A Commonsense Guide to Experimental Cancer Therapies and Clinical Trials” here.

While you cannot know the results of a clinical trial that has not been completed, it’s important to thoroughly understand why the trial is being conducted (the hypothesis) and how it’s going to be conducted (the experiment). You’ll also want to know how the clinical trial might benefit you: what is the expected—or hoped for—result. We will help you learn to ask the right questions of the right people to get these answers more quickly.–Dr. Tom Beer and Larry W. Axmaker

 

Cancer Clinical Trials Cover Final

–-Katherine O’Brien, August 2016

Before, During and After: Laura’s MBC Story

Laura and friend

Laura Snyder is a wife, mother of two, triathlete and patient advocate. In 2012, at age 49, she learned she had stage IIIa  breast cancer  that was ER-positive and HER2-positive.Chemo, surgery and radiation followed and she was deemed cancer-free.  But nine months later, Laura felt a lump in her neck. 

She learned the cancer had metastasized to her lungs, liver, and mediastinal and supraclavicular lymph nodes. Laura was treated with Taxotere, Herceptin, and Perjeta. After scans showed no evidence of disease (NED), she continued on Herceptin and Perjeta. Early in 2015, while doing flip turns in the pool during her regular swims, she felt mildly disoriented. She subsequently learned she had brain mets.  Whole brain radiation followed as did  Xeloda and Tykerb. In January 2016, additional lesions were found and she had gamma knife treatment. In June of 2016, after experiencing vertigo, Laura learned she had more brain mets and again had gamma knife treatment. She’s currently on TDM-1. 

After Laura’s most recent gamma knife treatment, she drew a self-portrait of herself in “the cage” aka the head frame used to ensure a patient remains in the exact same position for the procedure. Her drawing was so powerful it prompted us to invite her to share her story–and like Laura, this story is multi-faceted. Brain mets is part of it but there is so much more. You can read more about Laura on her blog. –Katherine O’Brien, MBCN, July 2016

 

Before, During and After

By Laura Snyder

June 2016: Back in the Cage | Before: – the abject, jaw clenching dread. During – the “Breathe, just breathe, from the belly” I repeat to myself throughout the seven hours I’m in this cage, feeling like a torture victim right out of a sci-fi horror movie. After – I don’t remember, did we get Vietnamese food?  As David Byrne sang, “Well, how did I get here?”

Let’s go back in time. . .

July 2012: Stage IIIa Diagnosis | In July I did my best Olympic distance triathlon to date. That’s a mile swim, a 25-mile bike ride, and a 10k (6.2 miles) run. I was a youthful 49 years old. This was me four years ago, thinking about whether to continue with this distance or move to a half Ironman.

Yup. One month later, I was diagnosed with Stage IIIa HER2+++ breast cancer in my right breast and several lymph nodes. Premeds are better now but the treatments have been the same for decades. Some of us call it Poison/Slash/Burn. First I had a six month regimen of difficult IV chemotherapy, followed by a bilateral mastectomy right to implants and axillary lymph dissection in which twenty of my precious lymph nodes were removed.

Pathology showed I did not have a pCR (pathologic complete response) to chemo, which I had been hoping for, and which I would have prayed for were I not a staunch atheist. Then the Burn – seven weeks of daily radiation an hour from home. I was done (except for the rest of the Herceptin infusions)! At least I thought/hoped I was.

May 2014: It’s Back | I suddenly felt a lump in my neck in May. It seemed to come out of nowhere. I tossed and turned with anxiety all night, and in the morning called my beloved oncologist. His response was “When can you get here?” Two hours later he was talking me down from a cliff and encouraging me to let the biopsy tell us what was going on.

Turns out I am one of the estimated 28% of early stage breast cancer survivors whose cancer metastasizes – mine to lymph nodes, liver, and lungs. After another regimen of chemo, this time for about eight months, I was pronounced NED (No Evidence of Disease). I prefer to call it NRED at this point of being a grizzled old cancer veteran, which stands for No Radiologic Evidence of Disease. Because with MBC YOU JUST NEVER KNOW.

June 2015: Brain MRI | In June,  I felt just a little funny doing flip turns in the pool. In another life I would have chalked it up to hunger, or dehydration, but in mets life I bugged my doc for a brain MRI. Yup. Eighteen lesions in what’s called a miliary pattern (don’t ask, I still don’t get it!), which meant they could not be treated with gamma knife so ten rounds of whole brain radiation later I was sent home to wait and see what my next scans would show. And I had to drop my beloved Herceptin and Perjeta and switch to Xeloda and Tykerb which are thought to cross the blood brain barrier.

January 2016: Shocking Developments | January: I was shocked – I don’t know why – to find out there were four lesions in my brain. Gamma knife here we go.

This involves wearing a cage literally screwed into the head, two in the forehead and two in the back of the head. It’s not lightweight by any stretch either. Each lesion would take about twenty minutes so I was in the game, after waiting hours for the detailed MRI to be read and for the radiation oncologist and medical physicist to plan their attack. Afterwards at a Vietnamese restaurant I was horrified to notice there was blood dripping down the back of my head.

June 2016: Vertigo | I’d had one clean brain MRI in April. Six weeks later I experienced some awful vertigo and asked to have the next one early. Lo and behold, a few more lesions to zap. Unfortunately, the more detailed MRI (1mm slices v. 5mm slices) showed 22. Yep, 22. I thought well, that’s it, I’m dead.

But the team wanted to gamma knife them all. I picture Dr. Kee, Dr. Adler, and the physicist whose name escapes me engaging in a huddle, coming out, doing a big chest bump, and hiking the ball. They were rock stars, as were the nurses and even an aromatherapy lady spritzing me with lavender and telling me to breathe as they bolted the frame on.

I was loopy (Ativan and Oxycodone), most of the time but I sensed that there was always some combination of this group around me, making sure I was doing OK. I wasn’t (who would?), but as we like to say at my house, it was “good enough for who it’s for.” I spent seven hours in the cage this time.

Treatment was again switched to TDM-1, part chemotherapy and part targeted treatment. And here I am. I am still reeling a little, and worried.

“Self Portrait With Cage”  by Laura Snyder

Drawing My Feelings | I drew this picture (the first I have drawn since high school art class) as an outlet for how I felt/feel. Most people are lucky enough not to see an image like this in their lifetimes!

While drawing, I referred to a photo of me resting in denial of the cage around me. My  drawing expresses the angst, sadness, and pain of finding oneself in this unenviable position. I’m no artist so I feel silly saying this, but I’m inspired by Frida Kahlo’s self portraits depicting the intense pain she suffered.

I call it “Self-Portrait with Cage,” stating the obvious. I couldn’t stop thinking “the devil’s in the details” when I looked at it. I think it’s because I drew very literally – the different colors of metal, the bolts and screws, the creases in the pillow and folds in the blanket, the dark circles under my tired, gray-tinged eyelids. I am planning to draw a series where I try to capture the emotions around MBC and its treatments.

How I Feel Now | In spite of this depressing report detailing the last four years, I find myself pretty content if I look through the lens of the everyday. I am a dedicated yoga practitioner and this I think has helped my body and mind more than anything. I don’t work, because each time I’ve tried some cancer catastrophe is thrown my way to deal with (see all of above!).

I swim; knit; write (not enough); play ukelele; hang out with my husband, kids (18 and 20 years old), and friends; and of course have started to draw. I started a yoga for cancer class at my local hospital, taught by my fabulous and inspired teacher, a yoga therapist. I’ve attended two LBBC Metastatic Breast Cancer Conferences and made deep friendships that started online even deeper. And learned how to be an advocate in LBBC’s Hear My Voice Program and lots of other stuff too.

Summing Up | I’m still alive to say that if you have MBC I have some advice:

• Support groups, whether online or in person, are invaluable. We can be so isolated and scared without other people to communicate with who walk in our shoes.

• And… be careful about getting your information from legitimate web sites or oncology professionals. There are a lot of ridiculous scams and “cures” to be found. Go the science direction.

• Find a yoga class that suits you and exercise when you can.

• AND find some contentment in your life every day. Your life is not over yet!!

Remembering Sarita Joy Jordan

Sarita at MBCN’s 2015 Conference in Boston

We are sorry to share our friend and fellow advocate Sarita Joy Jordan died this past weekend. Our sincere condolences to Sarita’s family and friends.

I met Sarita shortly after her 2013 metastatic diagnosis. We were at the YSC conference in Orlando and she had just participated in the Disney Princess 5K. Her first thought was for her children–I think that was always her outlook–her children came first.

I often told Sarita that she was so well named–“Joy” was her middle name and she truly exuded it. Sarita brought joy to so many people. If they were having a bad day, they could count on her Facebook posts to raise their spirits. They were often just a cute picture, sometime selfies of her morning drive with “Mini Me” as she sometimes called her youngest son. Sarita was very proud of her kids’ athletic, artistic, musical and scholastic achievements–we loved to share in this pride when she posted their latest accomplishments.

Sarita’s ever present smile was her trademark. She was among the most open and giving people I have ever met. Sarita gracefully dealt with insurance and other issues that would have made most of us swear, cry or just rant. That was not her way. She just deal with things–and she had faith things would ultimately be resolved.

Faith was so very important to Sarita. A lot of people don’t live their faith–Sarita really did–she embodied The Golden Rule. She touched so many lives–and by her own example surely inspired others to love their neighbor, too.

I don’t think Sarita ever hesitated to try something new. A few years ago, she was urging me to sign up for “Casting for Recovery.” Although I am a country mouse, the idea of putting on hip waders and standing in some body of water trying to catch a salmon or trout with a fly fishing rod was not in my comfort zone and I said so. Sarita, the Philly girl, didn’t hesitate at all. Even after she hooked her eye with first ever cast, her enjoyment wasn’t diminished one bit.

Last fall she posted a video of another adventure–this one was First Ascents, I believe. The trip involved  not only kayaking but sitting in the kayak on a bridge about 10 or 12 feet above the water and launching the kayak–essentially jumping into yet another body of water but while wearing a kayak. I can still remember the cheers in that video after Sarita successfully completed the challenge–maybe none louder than hers.

Mary Hernandez and Sarita shooting the MBC Alliance video: https://www.youtube.com/watch?v=AqUS582jkfg

Sarita was a tireless advocate. She worked with the American Cancer Society, Living Beyond Breast Cancer, the Metastatic Breast Cancer Network, the Metastatic Breast Cancer Alliance, Young Survivor Network and I am sure many others. A few months ago, despite all that was going on with her health, she even served as a DOD reviewer.

For an LBBC blog post, Sarita reflected on why she told her story: “I choose to share my story so that others don’t feel they are alone. I tell my story because I am an African-American and my community needs to be able to relate to the messenger…I  tell my story because I’ve learned that little money is spent on research for metastatic breast cancer and I’m running out of time to have my voice heard. This is why I am so grateful to be a Hear My Voice Outreach Volunteer with LBBC: to participate in community events and advocacy for metastatic disease. I tell my story for those that are no longer able to tell theirs.”

Last year I wanted to make a video about racial disparities in breast cancer. Many of the people featured in the video were Sarita’s friends. I am indescribably sad that she has now joined those friends.

But I will take my cue from Sarita–I will tell my story–and others. And I will embrace the words Sarita used in her Facebook profile: Educate, educate, educate!

Sarita’s legacy is everywhere–in her children, in the many, many lives she touched, in the countless advocacy projects she did. It was truly an honor and a blessing to have known Sarita. I miss her already and I always will.

—Katherine O’Brien, June 2016

 

Saying Goodbye to Lisa Bonchek Adams

Lisa’s blog will remain at http://lisabadams.com/

Lisa Bonchek Adams  died on March 6, 2015 at age 45 from metastatic breast cancer. Our condolences to Lisa’s family and friends.

Many people first learned of Lisa after she was the subject of stories from Guardian columnist Emma Keller and her husband, former New York Times executive editor Bill Keller in January 2014. The Guardian subsequently removed Emma Keller’s article; MBCN wrote a rebuttal to   Bill Keller’s article shortly after it appeared.

“Bill Keller’s op-ed piece on “Heroic Measures”  (January 12, 2014)  contains egregious factual errors,” we wrote in January 2014.  “It also misrepresents what metastatic breast cancer is and how it is treated.”

We hope that Lisa’s writing will be her legacy. Emma and Bill Keller both questioned Lisa’s motives. Why would would someone share so many intimate details of a devastating illness? Only Lisa could adequately address that issue–but in very general terms, writing about metastatic breast cancer probably provided a small measure of control over a disease where one’s future is mired in uncertainty. As the New York Times put it, people with metastatic breast cancer “live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along.”

We are reminded of Antaeus–the mythological figure whose strength remained intact as along as his feet were still touching the ground.  As long as Lisa could tweet, she remained grounded–strongly connected to her real-life family as well her online tribe.

One reason that Emma Keller was presumably drawn to Lisa’s online output was their shared history. Both Emma and Lisa were diagnosed with early stage breast cancer. Both had mastectomies followed by reconstruction. Both women were originally thought to have DCIS; Adams subsequently learned she had more extensive involvement.

Lisa was diagnosed with Stage 2 breast cancer in 2007 at 37 when her youngest child was 7 months old. In 2012, she learned the cancer had returned and was now metastatic, having spread to her bones.

From the Guardian article, it seemed Emma Keller might have wondered if Lisa’s experience would inform her own at some time in the future. We hope not–but of course we don’t know. We stress that every individual is a statistic of one. We can’t assume anyone’s cancer experience will the blueprint for our own.  Everyone is unique.

Most people with early stage breast cancer will NOT go on to have a metastatic recurrence. Unfortunately, about 30 percent will. Some people erroneously assume people with metastatic breast cancer must have done something wrong–and that’s why their cancer came back. But that is simply not true.

There are currently an estimated 155,000 people living with Stage IV breast cancer in the U.S. Most–about 90 percent–were previously treated for early stage breast cancer. Only about 10 percent were metastatic from their first diagnosis. Why did these patients’ early stage breast cancer cancer come back? How can we prevent this from happening? Those are answers we don’t have today.

Most breast cancer isn’t hereditary–it just happens. Lisa did have a family history of breast cancer–her own mother was diagnosed at age 36 and survives her. The median age for breast cancer in the U.S. is 61–a diagnosis before age 40 is thought to be more indicative of a hereditary cancer–but again, those are answers we don’t have today. Lisa shared that testing showed she (Lisa) wasn’t a carrier of the BRCA1 or BRCA2 mutations. Again, there is still so much we don’t know.

Lisa’s story illustrates the inherent cruelty of this disease. Lisa was a model patient–and an active and informed participant in her own care. She uncomplainingly endured harsh treatments as both an early and advanced stage cancer patient.  From 2012 to the first few months of 2015, she tried at least different six courses of treatment—when one failed, she moved on to the next, just as all of the 155,000 US people currently living with metastatic breast cancer routinely do. Eventually the scan, treat, repeat cycle ended—and Lisa became one of the 40,000 U.S. people to die from breast cancer this year.

Lisa’s story also puts the spotlight on a demographic often overlooked when we talk about breast cancer: young moms. Breast cancer is certainly more prevalent in older women–but it can and does happen to young people. According to American Cancer Society figures 232,340 U.S.  women are diagnosed with invasive breast cancer annually. Of those, about 27,000 are women 45 and under, or about 12 percent, and approximately half of those women are postpartum, defined as being within five years of having given birth.

We didn’t know Lisa personally. We admired her outspokenness and willingness to share the details of her life. Lisa may well be remembered for using social media to communicate the details of her life as a cancer patient,  but she was much more than a person with metastatic breast cancer. She was a daughter, a sister, a wife, a mother and a dog lover, particularly of Corgis. Although she was often serious in recounting the details of her illness, she had a quick wit and a great gift for writing.

In 2011, she recalled that her youngest son initially didn’t call her “Mommy” or “Mama.” Instead, he called her by the term of endearment she often use for him: Cutie. “Where’s Cutie?” he used to say.

Godspeed, Cutie.

Thank you for being you.

 

Both Sides Now: What Happens When a Nurse Becomes a Patient?

Sherri blogs at http://www.sherrifillipo.com

“Once a nurse, now a patient” is how Sherri Fillipo describes herself on her blog.  Sherri was first diagnosed with breast cancer in 2010 just prior to her 50th birthday; her metastatic diagnosis followed in 2012 when she learned her cancer had spread to her liver. This past February, we spoke to Sherri about her guest post (“The Conversation“). We found her observations on end-of-life issues as well as her own recent treatment decisions very compelling. We asked Sherri to tell us more about life on both sides of the bed rail–and as you’ll see, she had some excellent insights! In Part One, Sherri reflects on knowing too much as a nurse and yet feeling overwhelmingly vulnerable as a patient; in Part Two she offers some practical tips for patients.–Katherine O’Brien, Secretary, MBCN

 

I was born and raised in North Carolina about four hours from the coast. Summers were spent at the beach which is why I still love it to this day – everything related to water, swimming, eating all kinds of seafood, collecting seaglass, walking the beaches. My hope was to have retired to the outer banks of NC. Now I just spend as much time there as I can, while I can.

I am married to a great man and between us we have four grown children, two working, two finishing college this year! They have all been marvelous as the disease has gotten more serious. The kids often come to upstate New York where we now live and we always have a great time. We live near the Finger Lakes so wine tasting is almost always on the docket.

I will turn 55 late this summer and will probably spend it at the beach. Though not working now, for 25 plus years, I was a nurse. At the beginning of my career, I worked in the Operating Room and then eventually broadened my specialty to patient safety and process improvement. An ironic twist when I turned from nurse to patient, I wrote an article for the National Patient Safety Foundation (NPSF) the working title was Lying in the Bed Instead of Standing Beside It. At the time NPSF had a column reserved for the “Voice of the Patient” to allow those of us who were receiving care to write about our experiences to better teach caregivers what we, as patients, were really thinking. Below is an excerpt from that article highlighting some of the ways that I was impacted:

Mere months after my husband I relocated, I was diagnosed with invasive bilateral breast cancer. I received the diagnosis over the phone while the television cable repairman was working in the next room, boxes still stacked to the ceiling from our move. I was living in a state where I knew absolutely no one, and I was going to have to begin receiving health care in a hospital where I had no connections, did not know whom to ask for—nor whom to avoid—a lot like every other patient in the world. And I was afraid. Suddenly the patient safety officer was in the bed instead of standing beside it. I suddenly felt vulnerable. I had no appreciation of how long this feeling would walk with me over the next two years. All I knew at the time was that I wanted to go outside and scream, “Hey! I am not yet 50. And what do you mean cancer in both breasts? Isn’t cancer in one enough? I just had a mammogram a year ago. I get one every year. I am the ‘good girl’ who crosses all the t’s and dots all of her i’s. I just left a hospital that opened up a new cancer tower and now I find out I have cancer?”

 

The week I was diagnosed, I went to the hospital for my first exam and for the scheduling of an MRI. My nurse navigator greeted me and my husband by saying, “You must stop by the wig boutique when you leave. It is the most marvelous place with all sorts of choices.” I had not yet decided if I was having a lumpectomy or a mastectomy. How did she know I would be bald soon? I don’t think I even knew her name at that point. I was so rattled by that comment I remember little else of the conversation and was glad that my husband was there to hear it on my behalf. Later I thought about all those patients who come alone and are smacked by something we as health care professionals say that has a completely different impact on the patient than we ever intended.

 

A week later, I had not heard back about the results of the MRI. I called the nurse navigator, who said she would contact the physician. Four calls and two weeks later, the surgeon finally called me back and told me he had just reviewed the MRI with the radiologist. This is first thing he said to me: “Your MRI is a nightmare.” I was sitting on the couch alone in my new home and that word continued to reverberate in my head. Luckily I had a pen and paper, and as he talked I scribbled every word he said, hoping my physician-husband would translate for me.

 

Over the next year, after three surgeries and four rounds of chemotherapy, my perspective on patients and what is said and done to them took on a whole new meaning. I had to tell my nurse, new to the profession, how to catheterize me. Later, I had to ask a more experienced nurse to don sterile gloves after she contaminated her first pair in front of me. To be clear, I received exceptional care. I relay these stories now more aware than ever of how similar events are occurring all across the nation. I now know what it is like to wait fitfully, tearfully for pain medication—to press the call button and wonder if and when it will be answered. (It was always answered, but that fact did not lessen my anxiety each time I used it.)

 

The truth is, patients may feel pervasively vulnerable lying in a bed. I had been told to expect a postoperative dressing change to occur in the office. This was the one thing that I dreaded the most. While wrapped tightly with bandages and with the tissue expanders in place, I could pretend that I was pretty normal looking. But I knew when the dressing came off, my ability to pretend would be over. I was shocked and unprepared when the plastic surgeon flew in while I was still an inpatient, walked up to the bed and began tearing the dressing off my chest (no hand hygiene by the way). Since this was not the plan I had been told, I didn’t understand what was happening. I said, “You’re not taking off my dressing, are you?” Yes, he answered he was. I lay there in disbelief. I said nothing for fear of what I might say or in fear of what he might do. He said to me, “You don’t seem very pleased with the outcome. This is fantastic work!”

 

Later that day, one of the nurses came back and told me that indeed my lack of enthusiasm had him talking about me at the nurses’ station, wondering aloud why I wasn’t more pleased with the results. He was a great surgeon in every way, and today, two years later, I could give him the praise he wanted, but not then. Are we as health care givers in tune, perceptive, able to merge a task with the human component of compassion?

 

I think we need to speak for patients instead of asking them to speak up. While I agree that patients should be active participants in their care, I didn’t have the voice (or the courage, energy, or fortitude) to ask my surgeon to postpone the task, or call a nurse in to be with me while he changed the dressing. Ultimately, the nurse manager reminded the plastic surgeon that I had lost both breasts within the last 48 hours. To expect someone to be happy under those circumstances was asking a bit too much. She spoke for me because I couldn’t speak up.

 

Many months later, after my chemo treatment, when I had just gotten brave enough to face the world without my hated wig, I went to the hospital to have lab work drawn. While standing in line, I heard a phlebotomist say, “Hey there, Buckwheat.” I turned to see who was standing behind me but saw no one. I realized she was talking about me–and I nearly died of embarrassment right there. I had begun feeling a bit like my old self, and this woman, for reasons I still do not understand, thought she was being funny. I left the lab without having my blood drawn that day. Instead the hospital’s patient advocate found me (thanks to my husband, who worked there). After telling her my story, she advocated on my behalf with the laboratory department. She spoke up for me when I was too embarrassed to speak up for myself.

Portions of this article originally appeared in “Speaking for the Patient” in the P.S. Blog, published by the National Patient Safety Foundation; used by permission of  Patient Safety Insight. All rights reserved.

Coming Next: Sherri’s Inside Scoop on Improving Your Patient Experience

RIP Laurie Becklund: Journalist Wanted Big Data to Tackle Metastatic Breast Cancer

Laurie’s 2014 MedX talk

Journalist Laurie Becklund died on February 8, 2015 from metastatic breast cancer at age 66. On February 20, 2015, Laurie’s byline appeared in the Los Angeles Times for the last time.

In an Op-Ed piece called “As I Lay Dying,“ Laurie explained how she came to be one of 150,000 US people living with metastatic breast cancer and one of the 40,000 Americans this incurable disease will kill this year.

As Laurie noted in her opening sentence, metastatic breast cancer is the kind that kills people–no one dies from early-stage breast cancer. But as Laurie discovered, cancer can come back–even decades after someone successfully completes their treatment. In Laurie’s case, her breast cancer came back 13 years after her initial diagnosis. Scans revealed the cancer was now in her bones, liver, lungs and brain. When cancer spreads outside the breast, it is no longer curable–with metastatic breast cancer the goal is to control the disease for as long as possible.

For the past six years, Laurie, like most people diagnosed with metastatic  breast cancer, lived her life in three-month increments. Every 90 days or so, someone with MBC  faces a battery of scans to see what the cancer is doing. If the current drug is working, you stay on it. If it isn’t working, you try the next line of treatment. The average patient may receive eight or 10 different treatment regimens in sequence. Eventually all treatments stop working.

In December 2014, Laurie learned there was nothing left to do or try.

“I am dying, literally, at my home in Hollywood, of metastatic breast cancer,” Laurie wrote. “For six years I’ve known I was going to die. I just didn’t know when.”

Laurie made her family and friends promise not to describe her as having fought a courageous battle with breast cancer:  “This tired, trite line dishonors the dead and the dying by suggesting that we, the victims, are responsible for our deaths or that the fight we were in was ever fair.”

In her Op-Ed, Laurie recalled attending the Metastatic Breast Cancer Network’s  2010 conference in Indianapolis. “In one of the most powerful rituals I have ever seen, the group’s president asked all of us to stand, then sit back down when she reached the number of years since our diagnosis. At two years, most had to sit down.”

Laurie asked to be excluded from any photos or videos from that conference. As she explained in her editorial, in 2010 she didn’t want to call attention to herself or the disease. “Who would ever sign another book contract with a dying woman? Or remember Laurie Becklund, valedictorian, Fulbright scholar, former Times staff writer who exposed the Salvadoran death squads and helped The Times win a Pulitzer Prize for coverage of the 1992 L.A. riots? More important, and more honest, who would ever again look at me just as Laurie?”

It is probably fair to say meeting hundreds of other people living with metastatic breast cancer at that 2010 event gave Laurie a fresh perspective. In her LA Times essay, she describes meeting MBCN’s then president Ellen Moskowitz and former vice president Suzanne Hebert. (Ellen and Suzanne died within weeks of each other in 2012.)

By September 2014, Laurie had evolved from a reluctant conference participant to passionate metastatic breast cancer research advocate.  She was among the e-patients selected to address  Stanford’s Medicine X conference. Her presentation was called “Treat Me Like a Statistic and Save My Life.” 

In August 2014,  as she was working on her MedX speech, Laurie contacted MBCN for some supporting materials. “I am doing a presentation  in two weeks about metastatic breast cancer,” she told us. “It’s a pitch for big data projects. I’m also going to write an LA Times Op-Ed, primarily about the need to revise what breast cancer ‘awareness’ should mean today. I’d also LOVE to loop a copy of a video of the people in the audience being asked to stand, then sit down as the count of years alive goes up. do you have one? It really is one of the most compelling statements about MBC I’ve ever seen. Happy to credit MBCN.”

We responded that we didn’t have film of the audience, but sent her a link to the speaker’s portion.  (Ellen Moskowitz polls the crowd  at the 9 minute mark of this video.)

Laurie then offered some additional insights about her talk:

My main focus is that we need to restate ‘awareness.’ I mean, after 25 or 30 years? Would be nice. Under umbrella of what early stage (I was Stage1) cancer (all of us) needs to be aware of. Have you or anyone else posted anything that says here, these 3 or 4 points are most important? Have any of the organizations done that specifically? I’d love to be able to have a short, central message that includes questions that we all believe journalists should be asking for the NEW awareness. (Wish I had a better name.)

Another thing:

This is really about big data. I’m planning to stand up there and say (now that I’m at last out of the closet professionally) Use us. Use me or lose me. These big data people have so many conflicts, 30 different types of documents, inc in writing, competition among hospitals and companies for patents, etc, privacy issues, that I think it will be years before this really takes off.

It would be an organizing challenge, but i don’t think it would be hard to teach us and all those volunteer runners to do some data input on to a universal open source platform.

Things I’ve thought of:

— patients’ own record of side effects, including on specific drugs.

— putting in your own basic data as at doctors’ offices, including ER and PR but also FISH etc.genomic tests if done.

We sent Laurie the following:

13 Things Everyone Should Know About Metastatic Breast Cancer

Why Mets Matter PowerPoint (M Mayer, 2011)

What Have We Learned About Metastatic Breast Cancer (Patient’s Cheat Sheet to the Basics)

ASCO and Cancer and Big Data:

100 Stories About People Living With Metastatic Breast Cancer

Friends We Lost to MBC in 2013

Dumb Stuff People Say to People With Metastatic Breast Cancer

Two months after Laurie gave her talk, on October 13–National Metastatic Breast Cancer Awareness Day– the Metastatic Breast Cancer Alliance released the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer. The Alliance, which represents 29 cancer organizations, conducted a comprehensive analysis of current MBC research and patient needs, as well as information and services. As we reviewed the executive summary, it seemed to us that Laurie Becklund could have written it:

Learn more: http://www.mbcalliance.org/

In her Op-Ed, Laurie wrote: “We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them.”

Laurie Becklund was a gifted and widely admired journalist. We can think of no finer tribute than for her journalism colleagues to continue Laurie’s crusade.

As Laurie said: Use us.

Guest Blog: The Conversation

Guest blog by Sherri Fillipo 2/12/15  http://www.sherrifillipo.com

If you were to ask me what is the most difficult thing I deal with, I would tell you it is letting me talk about death and dying – what I do and do not want to occur both on this side of life and what I want you to do when I am on the other. If you know me, you know that I couch a lot of things in the cloak of humor because as they say, “just a spoon full of sugar helps the medicine go down..” and it’s true.  In a very southern way when I say something to my mother and it creeps up on the edge of death, she will say, “if you don’t shut up, I am going to smack you.” Don’t be alarmed. That is a very  southern thing to say, no matter how old the child is. But it is her way of saying, “I can’t talk about that or I don’t want to talk about that or talk to someone else about that…” And I get it. I really do.

I was perusing through the New York Times this morning and came upon one of their “most emailed stories.” If you don’t read the NYT, every day they will list the top ten stories at the moment that readers are emailing to family and friends. The topics vary widely and I do get a kick of what is making the rounds. It could be anything from Obamacare to some strange recipe for artichokes. You never know. But one of the top stories today was about a woman who had recently died and the title of the article was Seeking a Beautiful Death by Jane Brody.

In it, the author quotes Dr. Angelo E. Volandes,  author of a new book, The Conversation. A lot like the book I have been quoting by Atul Gawande (Being Mortal) the author says as Americans we have access to the best medical care in the world yet we often die some of the worst deaths in the world. Why?  Because we do not  have the “conversation” that would outline what we do and do not want at the end of our lives. I am not talking about those of us with terminal illnesses. I mean, as do these authors, all of us whether young or old, sick or well.

The list of questions that Dr. Volandes made (and that Ms. Brody used in her article)  is so spot-on that I don’t need to add anything to it. The questions are vital for everyone to have answers to:

• What gives your life meaning and joy?
• What are your biggest fears and concerns?
• What are you looking forward to?
• What goals are most important to you now?
• What trade-offs or sacrifices are you willing to make to achieve those goals?

Make sure that you, as the future patient, have answers to these questions AND that you have shared them with someone who will be making decisions on your behalf. Having this information locked inside your heart is going to do no one any good if you have not shared it with family or friends.

And all of this leads me back to my chemotherapy decision. I had my last PET scan a couple of weeks ago if you remember. And the liver spots had shown a decrease in activity. I was supposed to have been back to my oncologist  by now but had to reschedule my appointment. I am planning to see her today, Thursday, to discuss future treatment. I have decided I do not want to try either of the two chemos that she suggested to me when I had such a bad reaction to the Kadcyla. I am, however, going to accept a markedly reduced dosage and determine how I feel afterward. My family knows of this decision. I am not sure how they feel about it but they accept it and stand behind me while we see what happens. We all understand that they might not make the same decision, but they understand that it is the decision I need to make for me.

March 2015 Update: What Are We Doing About Metastatic Breast Cancer: MBCN Responds to HuffPo’s Barbara Jacoby

UPDATE:  HUFFPO’S JACOBY REVERSES EARLIER MBC STATEMENTS

On 3/19/2015, HuffPo columnist Barbara Jacoby again addressed the topic of metastatic breast cancer. Her most recent column is called “Metastatic Breast Cancer Patients Need Help” and essentially completely reverses all of the assertions she made in her December 2014 post.

At no point does Jacoby acknowledge the previous column or MBCN’s rebuttal. The earlier column–with all of its misleading/false assertions remains online. Jacoby did not reach out to MBCN or acknowledge our complaints. Nonetheless, we are confident she read this blog–as a 100-percent volunteer, 100-percent patient advocate led group we are pleased to have changed her mind. We only hope the people who read her prior column will read her more factual 2015 take on metastatic breast cancer.
“We need to do more,” Jacoby writes in her 2015 post. “We need to allocate more money and resources to research and education. We know that the researchers are out there looking for answers but often do not have the funds necessary to pursue certain theories or do the clinical trials necessary to determine the success of a certain treatment. We have lots of efforts throughout this country raising monies to find the cure and every single donation made and all of the funds raised are needed for so many programs to help those in need. But we need the research to make the long-term difference.” 

 

We couldn’t agree more.

Here is MBCN’s December 2014 rebuttal.

Recently, Barbara Jacoby wrote a blog post entitled, “What Are We Doing about Metastatic Breast Cancer?” In it, she made five assertions that need to be corrected with facts.

 

JACOBY’S ASSERTION #1

• Public support and and research funding for those with metastatic breast cancer is more than adequate

 

THE FACTS: According to an extensive analysis by the Metastatic Breast Cancer Alliance, metastatic breast cancer research makes up only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. See www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf

 

JACOBY’S ASSERTION #2

• Though a great amount of money and research is dedicated to early detection, people should do everything they can to get treated early because that will prevent a metastatic breast cancer diagnosis

 

THE FACTS: Breast cancer is an extremely complex disease. Some breast cancers will never become life threatening, even without treatment. And many others will metastasize, sometimes many years out, even when caught early. Some cancers are so aggressive that current treatments are ineffective, no matter how early the cancer is detected. Mammograms can’t tell us which breast cancers need treating nor can they overcome the shortcomings of our current treatments.

 

The majority of newly diagnosed metastatic breast cancer patients had early stage disease 5, 10, 15 or even 20 years earlier. They took advantage of mammograms. Many patients chose to have one or both breasts removed when they had early stage disease “to prevent the cancer from coming back.” The fact remains that research has not yet been able to explain for all patients which early stage breast cancer will return as metastatic disease. Research cannot yet explain the causes of metastasis and why cancer cells travel to particular organs. Metastatic breast cancer patients should not be made to feel guilty because “they did not do enough to be tested or checked.”

 

JACOBY’S ASSERTION #3

• All research in early breast cancer applies to Stage IV or metastatic breast cancer and all major research groups studying early stage disease are also studying metastatic breast cancer

 

THE FACTS: It is not scientifically correct to say that “all the major work” in breast cancer research applies to both early stage and to Stage IV breast cancer. Early stage disease and metastatic disease are very different in their complexity, molecular makeup and mutations. Also, breast cancer is not one disease and research about what drives one subtype of breast cancer does not apply to other subtypes. Clinical trial endpoints such as tumor shrinkage may not have relevance to tumor spread or metastasis.

 

JACOBY’S ASSERTION #4

• Survival rates of those living with metastatic breast cancer are improving because the author “has seen people who are living for 5-20 years with the disease”

 

THE FACTS: “Seeing” metastatic patients who survive 5 or 10 years does not accurately define the survival rates for the breast cancer community. The fact is that 40,000 women and men still die of breast cancer every year in the United States with metastasis the cause of virtually all deaths from breast cancer. Also, while some progress with research and new treatments has been made in reducing mortality rates from breast cancer, median survival after a metastatic breast cancer diagnosis is 3 years—and this has not increased meaningfully in more than 20 years!

 

JACOBY’S ASSERTION #5

• Everyone, including metastatic patients, should be optimistic about the future because research will permanently eradicate breast cancer

 

Read the full MBC Alliance report here.

THE FACTS: Since only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom focused on metastatic breast cancer research (cited above), we cannot feel confident that research in the near future will permanently eradicate breast cancer or end deaths from the kind of breast cancer that kills—metastatic breast cancer.

 

The very low percentage of research spent on metastasis research also contradicts Jacoby’s assertion that major research groups “everywhere” are “vested in finding the answers needed to treat and eradicate Stage IV cancer.” The field of metastatic breast cancer research is relatively small. Most funding goes to support basic research. There is little research in metastatic breast cancer control or outcomes.

 

Finally, Jacoby informs us  that we can easily confirm her assertion that there has been a lot of progress in metastatic breast cancer. All we need to do  is to “check out the progress that is being made.”  She evaluates progress based on the metastatic patients she has seen.

 

Knowing a few patients that have survived the odds does not make for accurate conclusions for the entire metastatic breast cancer community. The existence of “many” treatments and drugs does not mean they are appropriate for all subtypes. Sadly, researchers have not been able to identify the drivers of triple negative metastatic breast cancers, and for patients with this subtype, chemotherapies remain their “best” and usually “only” options. Such treatments with significant toxicities greatly impact patient quality of life.

 

Metastatic breast cancer is very different than early stage disease. There needs to be more research funding to combat this unique and deadly disease. In addition, in the United States, we lack accurate statistics on incidence, prevalence, and survival. And patients are challenged to find information and support services to help them live with this deadly disease.

 

Shirley Mertz
President
Metastatic Breast Cancer Network

Remembering Joani Gudeman (1964-2014)

Joani was a wonderful advocate; she’s shown here participating in a 2013 video

We are sorry to share that our friend and fellow board member Joani Gudeman died Friday, July 25, 2014 at age 50.  There will be a memorial service for Joani at Chicago Sinai Congregation, 15 W Delaware Place, Chicago on Friday, August 15 at 10 a.m. All are invited.

 

Joani told her story as the one of the patient introducers at MBCN’s 2013 conference in Houston. “I’m Joani,” she said. “I’m a wife, mother of two teenage boys, a dog lover, mystery reader, a vegetarian, trained listener, board member of MBCN and a person with metastatic breast cancer.”

 

In those few sentences, Joani set out her priorities: family first and cancer last. It is also telling that, with typical modesty, Joani referred to herself as a trained listener. Until recently, Joani was a practicing psychotherapist.

 

Originally from the Northeast, Joani came to the Midwest to attend Lawrence University in Wisconsin. From there, she went on to Chicago to attend the School of Social Service Administration at the University of Chicago and the Illinois Institute of Professional Psychology.

 

Although her official capacity with MBCN was Chair of Outreach and Volunteers, she also served in an unofficial capacity as a diplomat, consensus builder and in-house counselor. She patiently assessed and addressed the issue at hand. If the solution meant extra work for her—such as painstakingly reviewing and revising a lengthy and technical patient publication, she neither complained nor sought the accolades she deserved. She just did it.

 

“Our work together has helped me in so many ways,” Joani told us a few weeks ago. “Not only have I learned so much from each of your incredible talents and skills, I have been touched by your passion, love and commitment.  Working with you all gave me purpose, provided needed distraction and pushed me to expand myself in new ways.”

 

Joani touched us all in so many ways. In one of my last email exchanges with her, I told Joani I was thinking of her as I wrestled with some outreach tasks she previously handled. As I dealt with one particularly challenging call, I had to contain my impatience. I told Joani I needed a WWJD bracelet: What Would Joani Do?

 

That is a question we will be asking ourselves often in the weeks and months to come. Our heartfelt condolences to David, Jacob and Samuel and all of Joani’s family and friends.

 

–Katherine O’Brien

Secretary

MBCN

 

Interment will be private. A public service celebrating Joani’s  life will be held shortly. We will  share the information when we receive it.

Sheila’s Journey to Fight Metastasized Breast Cancer

Editor’s note: We are pleased to post this guest blog by Sheila Ghosh from the Netherlands, who wrote in response to an email from MBCN president, Shirley Mertz.  Sheila reminds us that mbc affects women around the world. We tend to get US-centric, but Sheila’s experience resonates with all of us. You can follow her blog at http://sheilaghosh.com/ or on twitter: @sheilaghosh.

---

Dear Shirley,
Thank you so much for your e-mail asking for people who wish to share their story. I would very much like to share my story with others.

First of all, I am living in Europe, in The Netherlands to be exact. I went to college in the US and lived in the US for 11 years, although I’m a Dutch citizen.

I don’t know if you would want a story from Europe, but I follow MBCN and would like to have a chapter or network like MBCN here in Europe.

My story is one of hope and my recovery feels like a miracle to me.
I was diagnosed with stage 4 cancer in July of 2012, at the first diagnosis, when I was 42. There was no history of breast cancer in my family. Also, I didn’t feel anything in my breast because I was checking for lumps, whereas this tumor felt like my breast bone (upper part of right breast.)

The metastases were spread all throughout my liver, so that it was one and a half times as big, like a deflated soccer ball. My liver was in such bad shape that hormone treatment wasn’t an option because it takes 6 to 8 weeks to start working and my liver was barely working (bilirubin at 50). After the first 10 weeks of weekly chemo’s (AC) didn’t work well enough, I got very sick from infections due to neutropenia. I could not eat or talk because of the mucositis and stomatitis. Meanwhile, my oncologist thought the cancer was growing and didn’t have much hope. I did not think I would live till Christmas of 2012.

Fortunately, I was transferred in October to the National Cancer hospital where I was given Mitomycin-C locally in the liver. Two treatments and two months later the results were so good that much of the cancer in the liver was replaced by scar tissue. The liver stabilized and I could eat and talk again. From January 2013 I took Xeloda which reduced the cancer in the breast and since May 2013 I’ve been on hormone therapy (Letrozole). I’ve been in menopause due to the cancer, not the chemo.

I’ve gone back to work – I work as a IT architect contracting for the government – and have been getting back in shape by exercising and eating healthy. Most of the time I feel great. I look good again and can function almost as before. My message to others is that there is life after hearing you have metastatic cancer, and with the right treatment and frame of mind and support more is possible than you would expect. I’m not cured – the cancer is there but inactive – so as long as the hormone therapy works I’m fine.

I also am part of a social network of other women with mets here, because there are very few resources for people like us. What bothers me especially is that patients with mets often don’t seem to count. The images and fundraising campaigns in the media suggest that either you can be cured (stages 1-3) or else you face imminent death (stage 4) and this frightens people. Research results and treatments for metastasized breast cancer are not easy to find here and there’s a big gap in knowledge between oncologists and hospitals. The many regulations slow down research projects and make the drugs exorbitantly expensive. Still, I am extremely grateful for this second chance I’ve been given and it has made me value my husband, family, nature, friends and my life so much more, I’ve taken up windsurfing and writing and work less.

That’s my story. I’ve been writing about my experiences at http://www.sheilaghosh.com in case you’re interested. This is a public site so feel free to use anything that you find interesting, with a citation/ reference. I hope you don’t mind but I am publishing this letter on my blog so others can follow. If you do mind, let me know and I will remove it.

Please let me know if I can help in any way.

Kind regards,
Sheila Ghosh
The Netherlands

Energy and persistence conquer all things

Editor’s Note: If you enjoyed Sheila’s story, please consider sharing yours. Email your story (500 to 800 words, max) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!