MetsMonday: What is Happening Today on Twitter and Beyond? March 2, 2015

March 2, 2015
Beth Fairchild was diagnosed with MBC in her early 30s.

Beth Fairchild was diagnosed with MBC in her early 30s.“I am a mother, a wife, a business owner, an artist, and a lover of all that lives,” is how Beth Fairchild of New Bern, NC describes herself on her Twitter page (@bethfairchildnc). “I also have advanced stage breast cancer.”

Beth Fairchild was diagnosed with metastatic breast cancer in her early 30s. She got together with several online friends — all about her age and all living with Stage IV breast cancer. They launched a website and on Monday, March 2, they plan to flood social media outlets with MBC information and hashtags such as #MetsMonday and #DontIgnoreStageIV. (Blogger Nancy Stordahl is credited with the ongoing #MetsMonday hashtag.)

Their goal with Project Hashtag as they have dubbed it, is to get MBC trending on Twitter and beyond.

Beth Fairchild’s determination to get the message out about metastatic breast cancer practically jumps off the screen — whether it is on Facebook, Twitter or this February 27, 2015 television interview.We were impressed with Beth’s poise and obvious preparation — she clearly had done her homework—she told viewers no one dies of early stage breast cancer—when cancer spreads beyond the breast to a vital organ that is was kills people. Most people treated for early stage breast cancer won’t have a metastatic recurrence—but unfortunately about 30% will—and there is no cure for metastatic breast cancer in 2015. Finally, Beth decried the woefully underfunded state of metastatic breast cancer research.

Early detection would not have helped Beth — most women with no family history would not get a mammogram until they are 50 years old. The median age for a US woman with breast cancer is 61. Cancer is supposed to be a disease of aging.

The answer is not to give 30-year-old women mammograms. It is to determine the scope of the problem.

Rebecca H. Johnson, MD, of Seattle (Washington) Children’s Hospital and the University of Washington in Seattle, noticed that evidence from the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database suggested that incidence of metastatic breast cancer in young women is on the rise. Johnson and her fellow researchers released a study that found “a small but statistically significant increase” in metastatic breast cancer over the last three decades among U.S. women aged 25 to 39 years.

During the past 30 years, more women ages 25 to 39 were diagnosed with metastatic breast cancer —  from 1.53 cases per 100,000 women in 1976 to 2.90 cases per 100,000 in 2009. This means that about 800 women younger than 40 are diagnosed with metastatic breast cancer each year now, compared to about 250 per year in 1976. While the increase is relatively small, it’s very troubling.

Changing the Landscape for People Living With Metastatic Breast Cancer” was published in 2014—the first output from a newly formed alliance of 29 cancer organizations. (MBCN Is a co-founder of the Metastatic Breast Cancer Alliance.) In a nutshell, according to the report’s authors, there’s a lack of awareness about metastatic breast cancer and how it differs from early stage breast cancer, too little research funding, and lack of accurate statistics on incidence, prevalence and survival as well as limited information and support services for those living with the disease.

We have written at length about how the US cancer registry doesn’t accurately track women with breast cancer as well as the dismal US federal funding for ALL cancer research—we won’t rehash that discussion here.

We can’t tell the entire metastatic breast cancer story in one day or one blog post. We know we need more research for Stage IV breast cancer. What can we tell people beyond that?

We were particularly taken with one question the Metastatic Breast Cancer Alliance raised in its Landscape Analysis: What gaps or roadblocks exist that hinder advances in MBC research?

Research Funding

>MBC research has been underfunded (approximately <5% of breast cancer funding).

>Overall cancer research is also underfunded (0.1% of the Federal budget.) Other areas receive more funding including the military, farm subsidies and education.

Matched Tissue Samples

>To advance MBC research, better access to tissue is needed, including the primary tumor and interval blood samples collected and banked between the primary and development of the recurrent metastatic tumor.

MBC tissue from different populations needs to be studied (e.g., MBC in younger, premenopausal women vs. MBC in older women).

Model Systems

>The previously available laboratory models for MBC research were discouraging but in 2013 and 2014, several laboratories have demonstrated interesting MBC models.

MBC models need to be validated an standardized across laboratories.

Academic-Initiated Clinical Trials

>Academics have not focused enough on MBC (in basic research, clinical trials or cooperative groups), although focus is rapidly shifting to MBC as a priority

>MBC research is complicated, costly and time consuming (e.g., early breast cancer studies in animals can be two or three months; MBC animal studies can take up to 9 months to run a single set of animal experiments).

>Lack of academic involvement has resulted in MBC trials being led by the pharmaceutical industry and business interests, including correlative science studies.

Epidemiology

>We need to better understand the epidemiology of MBC. How many patients have a recurrence? What are their treatments and responses? How long do they survive?

There’s so much to do — and we have shared only a tiny glimpse at the hurdles facing those trying to make a difference in metastatic breast cancer outcomes.

Every Monday is #MetsMonday. Let’s keep the conversation going!

Beth and her family in 2012.

Beth and her family in 2012.


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

February 22, 2015
Laurie's 2013 MedX talk

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:

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

February 21, 2015

angel 1Guest 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.


Submit Your Writing Assignment: Part 2 of the Memoir Webinar with Abigail Thomas

February 18, 2015
Click on image to replay the webinar.

Click on image to replay the webinar.

 

MBCN and SHARE had a terrific time with Abigail Thomas during  Part One of our Memoir Writing webinar. She is funny, warm and honest–what a pleasant distraction on a cold winter’s day.

You can listen to a recording of her talk here; Abigail’s presentation, including several of the poems she referenced, can be found here.

Abigail gave us an assignment for next week’s session. Write two page on one of the following topics:

  • 9 Things I Do Remember & 9 Things I Don’t Remember
  • It Takes Place in Water
  • It’s Not Funny (With “It’s not funny” being the second sentence.)
  • There Are Many Things I Miss
  • I’m Afraid of the Attic
  • Any Ten Years of Your Life (Using sentences that are only three words long).

 

Don't be shy! Send your two pages to cbenjamin@sharecancersupport.org

Don’t be shy! Send your two pages to cbenjamin@sharecancersupport.org

 

Abigail has graciously agreed to read participants’ submissions and share some of them next week. When you’ve got two pages on your chosen topic, send them to SHARE’s Christine Benjamin: cbenjamin@sharecancersupport.org. Christine will send them on to Abigail.

It will be fun–why not try it?

Part Two is Tuesday, February 24, 2015, from 1:30 to 2:30 PM EST. If you haven’t done so, register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

Hope you can join us!


Memoir Webinar With Abigail Thomas Starts Tuesday, Feb. 17, 2015

February 15, 2015

How do you get started? Abigail Thomas offers some insights.

 

Are you ready? Part One of MBCN/SHARE’s memoir writing webinar takes place Tuesday, February 17; Part Two follows on the next Tuesday, February 24, 2015. Both take place from 1:30 to 2:30 PM EST. Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

Presenter Abigail Thomas has given us a two-page writing “assignment”:

  1. Take any 10 years of your life.
  2. Reduce them to two pages.
  3. Each sentence should be only three words long.

Example: He was cute. I was clueless. It seemed right.

(We hope you can complete this assignment prior to the webinar—but if you can’t or don’t want to, you’ll still enjoy the webinar. There’s no obligation.)

Here’s what Abigail will talk about:

  • Why memoir?
  • What IS memoir?
  • What kinds of memoir are there, what are the rules? (There are no rules except for honesty.)
  • What goes in memoir
  • Finding a side door when the direct approach is too daunting
  • What to do when something gets in the way.
  • Is there a different objective for cancer patients or survivors than other people?
  • Clarity: surprise yourself, be not a victim nor an angel
  • NEVER worry about what others will think.

 

About Abigail Thomas

Abigail Thomas (Photo by Jennifer May)

Abigail Thomas (Photo by Jennifer May)

Abigail Thomas, the daughter of renowned science writer Lewis Thomas (The Lives of a Cell), is the mother of four children and the grandmother of twelve. Her academic education stopped when, pregnant with her oldest daughter, she was asked to leave Bryn Mawr during her first year.

She’s lived most of her life on Manhattan’s Upper West Side, and was for a time a book editor and for another time a book agent. Then she started writing for publication. Her first three books “Getting Over Tom,” “An Actual Life,” and “Herb’s Pajamas” were works of fiction. Her memoir, “A Three Dog Life,” was named one of the best books of 2006 by the Los Angeles Times and the Washington Post. It won the 2006 Inspirational Memoir Award given by Books for A Better Life.

She is also author of “Safekeeping,” a memoir, and “Thinking About Memoir” and the soon to be published “What Comes Next and How to Like It,” a memoir coming out at the end of March from Scribners. She teaches writing workshops and leads the Memoir Group at Kingston ‘s Oncology Support Program of the Health Alliance of the Hudson Valley.

Abigail lives in Woodstock, New York, with her dogs.

 

Stay tuned: We’ll have some more material to share.

Hope you can join us!

Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/


Memoir Writing Starts Tuesday, February 17th

February 11, 2015
We are thrilled  Abigail Thomas is hosting these webinars

Did you do your two-pages yet? Remember: every sentence should be three words long. Do it now!

It’s less than a week until MBCN/SHARE’s memoir writing webinar! Have you signed up?

 

Part One is Tuesday, February 17; Part Two follows on the next Tuesday, February 24, 2015. Both take place at from 1:30 to 2:30 PM EST. Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

 

Presenter Abigail Thomas has already given us a two-page “assignment”:

 

  1. Take an 10 years of your life.
  2. Reduce them to two pages.
  3. Each sentence should be only three words long.

Example: He was cute. I was clueless. It seemed right.

Thomas is famous for this exercise—read what she told Oprah’s readers here.

Please have your two-page assignment done before our first webinar on February 17. (Please be assured you can still participate if you haven’t done the assignment–if you can do it, great, if you can’t or choose not to, that is fine, too.)

For those “keeners” as our Canadian friends call them, here is some additional reading material compiled by MBCN.

Great Questions for Anyone

Are you helping someone write their memoir? StoryCorps offers this list of questions to help get the conversation started. Here is a video that explains how you can interview someone to preserve their story.

 

Thinking About Memoir by Abigail Thomas

“Be honest, dig deep or don’t bother,” says Abigail Thomas in this 128-page guide. Thomas includes writing prompts throughout her book as well as adding several pages of writing prompts at the end.

 

The Power of Memoir: How to Write Your Healing Story by Linda Meyers

The Power of Memoir uses an eight-step process to help readers identify milestones in their lives and tell their stories.

 

On Writing: A Memoir of the Craft by Stephen King

King’s book is on writing in general—not specifically on writing a memoir. Here are 22 lessons from his book.

 

Following Abigail’s instructions, we’ll conclude with this three-word sentence:

 

Sign Up Now!


Write Your Life’s Story With Bestselling Author Abigail Thomas

February 2, 2015
We are thrilled  Abigail Thomas is hosting these webinars

We are thrilled Abigail Thomas is hosting these webinars

Want to beat the winter blahs? Have you always wanted to write your life story but didn’t know how to get started? The Metastatic Breast Cancer Network, in collaboration with SHARE, has a two-part free webinar just for you.
Presenter Abigail Thomas is the author of bestsellers such as  A Three Dog Life, Safekeeping, Thinking About Memoir and What Comes Next and How to Like It.  She teaches writing workshops and leads the Memoir Group at Kingston ‘s Oncology Support Program of the Health Alliance of the Hudson Valley.
When: Tuesday Feb 17 and Tuesday  Feb 24 from 1:30 – 2:30 PM EST.
Who: All affected by breast or ovarian cancer (including caregivers) are welcome!
Registration: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/#place
In 2011, after Thomas’ daughter, Catherine,  was diagnosed with triple-negative breast cancer, the bestselling author volunteered to lead a five-week writing workshop.  As Nina Shengold reports, three years later, the program remains popular–so much so that there is a waiting list for another group. Fifteen of the workshop participants recently published an anthlology (holding on, letting go).
“When [Catherine’s] year of treatment ended, I wanted to be part of the community that had been helpful to us in so many ways,” Thomas explains. “That was the start of the Memoir Writing Workshop at the Cancer Support Program in Kingston.
Just like Thomas’ workshops, our webinar will start with this two-page assignment:  Take any ten years of your life; reduce them to two pages, and every sentence has to be three words long.  “Not four, not two, THREE words long,” she says. “Here is one example: ‘he was cute. I was clueless. It seemed right.'”

Thomas says her students soon learn there’s nowhere to hide in three-word sentences. “You discover that you can’t include everything, but half of writing is deciding what to leave out. Learning what to leave out is not the same thing as putting in only what’s important. Sometimes it’s what you’re not saying that gives a piece its shape.”

Please have your two-page assignment done before our first webinar on February 17. (Please be assured you can still participate if you haven’t done the assignment–if you can do it, great, if you can’t or choose not to, that is fine, too.)

 


Stay tuned for more updates! In the interim, after you finish your two pages,  you can read Abigail’s 2008 article for Oprah’s magazine, “How to Write Your Own Memoir.”

And now, we would like to conclude  with three words concerning these webinars:
We can’t wait!

 

Take any ten years of your life; reduce them to two pages, and every sentence has to be three words long. Example: He was cute. I was clueless. It seemed right.


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