Celebrating Jill Cohen, Dancing With Cancer Blogger

August 13, 2016

We are sorry to share that “Dancing With Cancer” blogger Jill Cohen died this past Thursday, August 11, 2016. Jill lived for a remarkable 14 years with metastatic breast cancer. She was 56 years old.

“Jill’s last dance with cancer occurred this morning at 11:18 today at hospice at Swedish at Cherry Hill in Seattle,” wrote her husband, Rik, in a Facebook post. “She was not in any pain. Susan her sister and I were there holding her hands as she breathed her last breaths. She lived life to the fullest, and wanted no “pity party” so do not mourn her death but celebrate her life by living and loving each other. Thank you to all for the hugs, love and reachouts from around the globe. Jill and I thank you from the bottom of our hearts.”

Funeral services are set for Sunday at 3PM at Congregation Beth Shalom at 6800 35th Avenue NE in Seattle’s Wedgwood neighborhood. In honor of Jill’s last request purple is the color of the day. 

“I know many women don’t live as long as I have with mets (12 years as of August 2014),” Jill said  in this post. ” I think I provide hope to many even though I have mets to multiple bones, liver and brain, long-lasting neuropathy and lymphedema as well as the usual fatigue etc. associated with years of treatment.”

Jill most certainly did provide her fellow patients with hope. She had so many talents and interests: music, cooking, writing, dogs and of course dancing. Although cancer was part of her reality, Jill was so much more than a cancer patient. She was always on the go. I was amazed in 2014, when Jill went on a tour of Bulgaria with her folk choir, Dunava. I really enjoyed Jill’s accounts of the trip: She was a keen observer with a fine eye for small details. “New shops, cafes, and restaurants abound,” she wrote of her excursion to Plovdiv, the second largest city in Bulgaria. “Except for the public toilets, where a squat toilet and Western-style toilet sit privately side by side. To use either one, you have to ‘pay’ the lady outside 50 stotinki, which regretfully doesn’t make the toilets any cleaner.”

Jill was very proud of her heritage–she gave her readers a wonderful glimpse into her faith and its traditions. In 2010, she wrote about celebrating the Jewish new year. “I was honored with the Kohen aliyah to the Torah,” she wrote. “Every time I am asked to read this blessing, I think of my father. For Dad, being a Kohen, a descendant of the ancient Jewish priests, was a special responsibility and privilege. . . I remember the first time I was offered the Kohen aliyah, at summer camp when I was about 15. I knew about it a few days in advance and had to call home long distance — collect! — from the pay phone to be sure I knew my full Hebrew name: Yachna Maryam bat Shimon Shir haKohen u’Masha Leah. Dad was startled but happy to oblige.”

Although Jill provided in-depth descriptions of all that was happening with her treatment, these accounts were straight forward–no drama, no despair, just the facts. Or, as Rik said, no pity party.

Jill was active with many cancer groups–a great spokesperson for those living with Stage IV breast cancer. She participated in Living Beyond Breast Cancer’s (LBBC) Hear My Voice patient advocacy program and shared her story here. She was one of five women with mets profiled as part of  A Story Half Told,  a national partnership with advocates, patients and healthcare professionals that aims to elevate public understanding of metastatic breast cancer.

Jill said that her philosophy was Dum vivimus, vivamus which means while we live, let us live. “Life is precious,” Jill said. “In a very real sense, we all have the same amount of time — today.”

May her memory be for a blessing.

 

–Katherine O’Brien, August 2016

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Metastatic Breast Cancer Researchers Address MBC Alliance Meeting This Week

February 1, 2016
Shirley Mertz is representing MBCN

Advocates, researchers, industry and government representatives are at the Alliance’s meeting, including MBCN’s own Shirley Mertz

 

Metastatic Breast Cancer Alliance Research Task Force Meets Today in Dallas; Focus of Discussion is Improving Length and Quality of Life for People Living With Metastatic Disease

Dallas – February 1, 2016 – Metastatic breast cancer (MBC) is cancer that originated in the breast but has spread to other parts of the body, such as liver, lung, bones and brain. It causes >40,000 deaths every year in the U.S., a number that has remained unchanged for three decades.  

This alarming fact is driving the advocate-led Metastatic Breast Cancer Alliance (“the Alliance”) to convene 60 experts from patient advocacy, academia, industry and government to discuss barriers in MBC research and possible solutions to better coordinate and accelerate research and translation to help patients sooner.

“As a person living with MBC each day, I’m grateful for the scientists and experts who have taken time out of their busy schedules to help guide the Alliance in the most thoughtful directions for MBC research,” commented Shirley Mertz, President of the Metastatic Breast Cancer Network and Co-Chair of the Research Task Force.  

Dr. Danny R. Welch, Professor and Chair of Cancer Biology at the University of Kansas Cancer Center noted at the start of the meeting that “My career has been focused on research on metastasis and putting an end to breast cancer. I have never seen as much energy, collaboration and excitement to work together – across academic, patient advocacy, industry and government sectors- as I have by working with this Alliance.”  

“As Co-Chair of the Alliance Research Task Force, along with Shirley Mertz, we’ve been working with these experts for the last eight months [by phone and webinar] discussing barriers to MBC research,” said Stephanie Reffey, Managing Director, Evaluation and Outcomes at Susan G. Komen, today. “These prior meetings culminated in today’s “Think Tank” in Dallas, where we are devising specific, actionable projects the Alliance can lead to accelerate MBC research.”  

In 2014, the Alliance released its Changing the Landscape for People Living with Metastatic Breast Cancer Report, which analyzed 224 clinical trials, 2281 funded research grants, 7900 MBC patient responses to surveys and 175 literature articles on quality of life and epidemiological studies.  

“Our research of the scientific landscape found a number of gaps and challenges in lab research and clinical trials impeding progress in scientific research,” said Chair of the Alliance, Dr. Marc Hurlbert. “After today, the Alliance’s task is to now facilitate a cooperative effort to review the objectives from this meeting and develop actions that can be taken in the immediate term. Given the toll MBC takes on patients and their caregivers, we have a responsibility to waste no time acting on the direction from this important meeting.”  

Representatives at the meeting in Dallas include:
Advocate Nonprofits: Breast Cancer Research Foundation, BreastCancerTrials.org, Dr. Susan Love Research Foundation, Inflammatory Breast Cancer Research Foundation, Metastatic Breast Cancer Network, Patient Advocates In Research (PAIR), Research Advocacy Network, Susan G. Komen, Theresa’s Research Foundation  

Academic Institutions: Baylor College of Medicine, Broad Institute, Dana-Farber/ Harvard Cancer Center, Fred Hutchinson Cancer Research Center, Institute of Cancer Research (UK), Johns Hopkins University School of Medicine, NYU School of Medicine, Salk Institute for Biological Studies, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, University of California San Francisco, University of Kansas Cancer Center, University of Michigan, University of Pittsburgh Cancer Institute, University of Southern California, University of Washington School of Medicine, University of Texas MD Anderson Cancer Center
 

Government: U.S. Food and Drug Administration, National Cancer Institute
 

Industry: Eli Lilly and Company, Genentech, Novartis Pharmaceutical Corporation, Pfizer Worldwide Research & Development
 

About the Metastatic Breast Cancer Alliance
The Metastatic Breast Cancer Alliance is led by advocates and, since forming with 15 groups in October 2013, has grown to be the largest breast cancer alliance in the U.S. with 40 of the leading cancer charities, advocacy groups and individuals and pharmaceutical industry partners. The Alliance vision is to transform and improve the lives of people living with metastatic breast cancer. The Alliance’s work focuses on three outcomes:
1. Advancing progress in scientific research
2. Increasing understanding of the disease and access to information and support
3. Building awareness of how metastatic disease differs from early stage breast cancer
 

More information about the Alliance is available at www.mbcalliance.org
Facebook: https://www.facebook.com/mbcalliance/
Twitter: @mbcalliance #MBCResearch
YouTube: http://www.youtube.com/mbcalliance


MBCN Supports Metastatic Breast Cancer Researchers at University of Chicago With Leadership Awards

November 12, 2015
MBCN's Shirley Mertz (left) and Katherine O'Brien (far right) with leadership award recipients Dr. Nanda and Dr. Chmura.

MBCN’s Shirley Mertz (left) and Katherine O’Brien (far right) with leadership award recipients Dr. Nanda and Dr. Chmura.

At a Metastatic Breast Cancer Forum held by the University of Chicago Medicine Comprehensive Cancer Center on October 27, 2015,  patients and caregivers heard from two University of Chicago clinicians, oncologist Dr. Rita Nanda and radiation oncologist Dr. Steven Chmura, who shared current and new approaches aimed at improving treatment outcomes for women who live with metastatic breast cancer, a currently incurable, but treatable form of breast cancer that ends the lives of 110 people every day and 40,000 lives annually in the United States.

At the conclusion of the presentations, Shirley Mertz, a metastatic breast cancer patient, and President of the Metastatic Breast Cancer Network (MBCN), an all-volunteer, non-profit, nationwide patient-led organization, noted that although metastatic breast cancer is responsible for virtually all breast cancer deaths, a recent analysis revealed that only seven percent of all government and privately funded grants from 2000-2013 focused on improving outcomes for those living with metastatic breast cancer. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally. “We know research holds the key to changing those statistics,” said Mertz.

Mertz then announced that MBCN wants to support the ongoing research of Dr. Rita Nanda and Dr. Steven Chmura by presenting an  MBCN Research Leadership Award to each in the amount of $30,000. Mertz said that the awards are made possible from contributions sent to MBCN from individuals, families and work colleagues who want to honor or remember loved ones, colleagues, and friends with metastatic breast cancer.

Mertz noted that Dr. Nanda’s research has been directed toward the treatment of triple-negative metastatic breast cancer. She has sought to identify novel anti-tumor treatments, such as using the drug pembrolizumab, to activate the body’s immune system in these patients. Immunotherapy has been shown to improve patient outcomes in advanced lung cancer and advanced melanoma, and Dr. Nanda’s research advances knowledge about using immunotherapy in metastatic breast cancer. (Here’s Dr. Nanda’s triple negative presentation from MBCN’s 2012 national conference.)

Dr. Steven Chmura is leading a national team of radiation oncologists in a national Phase II/III open trial that randomizes breast cancer patients with only 1-2 metastases, called oligometastatic breast cancer, to compare survival outcomes in standard of care therapy with or without stereotactic body radiotherapy (SBRT) and/or surgical ablation. Mertz said the Research Leadership Award from MBCN insures that participating study sites can perform needed biomarker tests of study participants. Outcomes of the trial could impact how metastatic disease is treated in the future in a subset of patients. (Here is a copy of Dr. Chmura’s presentation: Chmura talk_10_27_15. For an overview of Dr. Chmura’s work, see this video from MBCN’s 2012 National Conference.)

ABOUT THE METASTATIC BREAST CANCER NETWORK

The Metastatic Breast Cancer Network, a national, not-for-profit organization, was founded in 2004 to raise awareness about the kind of breast cancer that is rarely discussed in the breast cancer support groups or the media—metastatic breast cancer. Unlike early stage breast cancer, in which cancer cells are confined to the breast, in metastatic breast cancer, cancer cells have traveled from the breast to other sites in the body. Led by patient advocates, MBCN has worked to offer education and information to patients and their caregivers through its website (mbcn.org); targeted brochures developed for the public and those newly diagnosed; and an annual conference for metastatic patients at major comprehensive cancer centers.


Where’s my clinical trial?

May 17, 2014

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting of the American Society of Clinical Oncologists. I’ve reviewed the agenda. Interesting and promising research will be reported on, not just in breast cancer but across the cancer disease spectrum.

One thing I didn’t find? Research papers about me, about those of us who are stable or have been NED (no evidence of disease) for years. We are defying statistics and maintaining that fragile, illusive state of tumor dormancy. Isn’t any researcher interested in running my genomic profile, sampling my blood and tumor tissue, establishing a baseline of a mets patient who is doing well? Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.

Dr. Susan Love in speaking about her research foundation, often cites an anecdote about aviation experts in World War II. They were studying downed planes until someone suggested this: “Why not look at the planes that stayed in the air? ”

This is the 50th anniversary of ASCO and visiting cancerprogress.net reveals milestones in cancer research and treatment. Yet, there is still much room for improvement. 40,000 women and men die every year from breast cancer—metastatic breast cancer. That number is essentially unchanged in the last decade. 110 people each day, every day, a daily catastrophe that doesn’t make headlines. 110 people dying every day; 770 dying every week; over 3000 every month– from the cancer, which is still viewed as one of the ‘better’ cancers to get. We can and must do better. Even Nancy Brinker tweeted this week: “So much more work to do together to end MBC.”

So, ASCO researchers, I am ready and willing. Study me. Collect my data. I know there are others out there in my situation. Last month I spoke at a program at NYU and a few people in the audience spoke up and said they had been NED for years. Sign us up, ASCO. We’re ready to help.

I’m not a researcher or clinician, just a patient advocate, a woman living with metastatic breast cancer, who is attending the ASCO 2014 meeting and will take every opportunity to ask: Where’s my clinical trial?