Remembering Sarita Joy Jordan

June 21, 2016
SaritaDontIgnore

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.

MaryandSarita

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

20131009saritajordan

 

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Notes for Those Newly Diagnosed With Metastatic Breast Cancer

April 25, 2016
Learning you have metastatic breast cancer can unleash a tsunami of emotions. Fear, panic, anxiety and anger are just a smattering of common responses. How can you deal with these feelings?

 

LBBCGuide

 

 Living Beyond Breast Cancer (LBBC) and MBCN have worked together to produce a  Guide for the Newly Diagnosed. See http://www.lbbc.org/get-support/print/guides-to-understanding/metastatic-breast-cancer-series-guide-newly-diagnosed

 

Talk to your oncologist--he or she may prescribe Ativan or other anti anxiety medications. Many treatment centers also have counselors on staff who specialize in helping those dealing with a cancer diagnosis. Ask if your center has a support group for metastatic breast cancer patients. Your oncologist also may be able to connect you with someone dealing with a similar diagnosis. Oncologists–like all medical professionals–must respect privacy laws.

 

If your doctor can’t suggest a local contact, you can reach out to a peer matching program and/or metastatic breast cancer hotline.

 

Here are several to check out:
SHARE hotline and phone support groups: http://www.sharecancersupport.org/share-new/support/groups/#metastatic

Living Beyond Breast Cancer helpline and other resources: http://www.lbbc.org/node/1578

Young Survival Coalition SurvivorLink is here: https://www.youngsurvival.org/survivorlink

 

Support Connection provides emotional, social and educational support here: http://supportconnection.org/contact-us-for-support/

 

BreastCancer.org has excellent information as well as  a dedicated Stage IV discussion forum. Here you will find others with MBC  https://community.breastcancer.org/forum/8

 

BCMets was among the first online forums for people living  with metastatic breast cancer:https://www.bcmets.org

 

Inspire.com hosts an Advanced Breast Cancer board: https://www.inspire.com/groups/advanced-breast-cancer/

Most people are familiar with early-stage breast cancer. Just what is metastatic breast cancer? Here is a concise overview:

NCCN Guidelines for Stage IV breast cancer treatment can be found here: http://www.nccn.org/patients/guidelines/stage_iv_breast/files/assets/common/downloads/files/stage_IV_breast.pdf   ( This PDF was issued in 2014; several new drugs have come out in the interim.)

BreastCancer.org has a detailed guide on understanding your pathology report: http://www.breastcancer.org/Images/Pathology_Report_Bro_V14_FINAL_tcm8-333315.pdf

How do you find an oncologist? You can ask your primary care doctor for a referral. Also: consider working with an NCI designated cancer center. Here  is a list: http://www.cancer.gov/research/nci-role/cancer-centers/find

Receiving the NCI-designation places cancer centers among the top 4 percent of the approximately 1500 cancer centers in the United States. More here: https://en.wikipedia.org/wiki/NCI-designated_Cancer_Center

 

Finally, we urge both the newly diagnosed and “veteran” patients to watch

Dr. Don Dizon’s EXCELLENT presentation from MBCN’s 2013 national conference: https://www.youtube.com/watch?v=5RKCGEpk2po
Dr. Dizon’s PRO approach (Pragamatic, Realistic and Optimistic) resonates with patients. Hopefully after watching this video you will feel informed, uplifted and empowered!

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


RIP Holley Kitchen, the MBC Mom Who Reached Millions

January 12, 2016

MBCNbuzz

We were so very sorry to learn Holley died today, January 12, 2016.  She was 43 years old.

“Our hearts are broken as we share the news that Holley peacefully passed away early this morning,” writes Holley Facebook page friend and administrator. “She was surrounded by love, as she has been in every moment of her life. . .Details regarding Holley’s services will be forthcoming. Please respect the privacy of those closest to Holley as they grieve and make all the necessary arrangements. Thank you for your unending support and love.”  ‪#‎Lifer‬

Anyone who wishes to support the Kitchen family financially, can find the links here. Our hearts go out to Holley’s family and friends. She was a true gem.

“I didn’t know my risk for reoccurrence or what metastatic disease even meant,” she told PEOPLE magazine about the impetus for her famous video. “I didn’t want someone feeling…

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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.


Sherri Shares: My First Visit From Hospice

August 13, 2015

See 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. Sherri has done several guest posts (The Conversation, When a Nurse Becomes a Patient, Why Does My Oncologist Always Ask Me How I am Feeling and Improving Your Cancer Patient Experience). Sherri recently entered hospice–we have found her blogs very informative and hope you will, too. Here’s Sherri’s account of her first hospice visit. 

My hospice nurse,  Melissa, recently made her first visit. I fretted about the apartment, plumping pillows, dusting counters like I was having a dinner party. I don’t know why. I guess of all the people I have ever had come to my home in the past 55 years, hospice has not been one of them!

We ended up spending two hours together and I am not sure why except I had a million questions that I wanted answered,  more from a curious nursing perspective than patient. At one point, she looked at me and said, “Most people don’t want nearly this much information this soon!” I told her I did. This is an area of nursing/healthcare that is a total mystery to me and I was determined to draw back the curtain and get some answers by dern!

Truly, it was what I would call an intake assessment. Basic demographic information from me, though we did tip toe around delicate issues of death (Did I have a ‘Do Not Resuscitate’ Order? Do I have a healthcare proxy?). I believe she would go as far as her patient would let her. Some of the things I wanted to know included:

  1. Can you use my port for medication? No, they do not use the port. They will provide medication by mouth until the swallowing reflex is gone and then they transfer to a liquid mixture that they say works well when given via a syringe (no needle on the syringe) into the back of the throat that slides down and does the trick.
  2. Will there be morphine in the home (the nurse in me goes, “WHAT?”) and the answer is yes.
  3. I asked her if my neighbor could administer it and the hospice nurse said she could. Then I shouted over my terrace to where my neighbor was sitting on her terrace and asked her if she would like to give me morphine when the time comes and of course she said, “I would love to but only if you will share! You know those old Bianca commercials where they spritz a little mouth freshener into their mouths?” She said she would just take a little. NO, she is not serious. She just knows how to make me laugh in tense situations.

Things I learned:

  • Patients are placed on teams of which there is a nurse, social worker, spiritual liaison and host of others. There is a weekly interdisciplinary team meeting where you are the center of attention and the team discusses how you are doing, they review the meds you are on etc. I LOVE this idea. We do it in the hospital but not nearly enough. Everyone is together and everyone is looking at you from their professional perspective. Think holistic.
  • Everything is conducted here in the home which I mentioned yesterday.
  • When I begin to have difficulty with activities of daily living, there is an LPN who can come to the home an hour a week and assist with bathing, etc.
  • Physical therapy is a benefit (I am working on some way to get a massage out of this but I can’t quite figure how to word my need for one to make it sound medical!)
  • As a nurse I am used to the question (ten thousand times over), “One a scale from 1-10, how would you rate your pain?” Hospice has a different question which she said would be asked every time and it went something like this, “What is the one thing today that is most on your mind?”

All in all an oddly pleasant afternoon with this benevolent stranger. Next up, the social worker comes in on Monday. Stay tuned. All is well. Cats are curled up. The sun is shining. The temps are cool. I am drinking coffee.

Follow Sherri’s story at http://www.sherrifillipo.com


MBCN’s Scan, Treat, Repeat T-Shirts Now On Sale

July 30, 2015
Shirts are $15 at http://www.booster.com/mbcnscantreatrepeattshirt; allow extra time for processing and delivery

Shirts are $15 at http://www.booster.com/mbcnscantreatrepeattshirt ; allow extra time for processing and delivery

If you’ve attended a recent MBCN conference, you’ve seen our “Scan, Treat, Repeat” tshirts. We are happy our shirts have been a hit! In fact they’ve been so popular, we’ve struggled to keep up with the demand.

Good news!  We are offering shirt for sale again via Booster.com. Our shirts can be ordered at http://www.booster.com/mbcnscantreatrepeattshirt for $15.

Because it isn’t feasible to screen print tshirts on demand, the tshirt vendor doesn’t print the shirts until all orders are received. The shirt company requires site users to run campaigns that are generally three to four weeks long. So, shirts can be ordered up until August15, 2015. It will then take about two weeks for the vendor to print and deliver the shirts.

In  addition to printing and shipping costs, Booster.com collects a percentage of each sale. We wanted to make our shirts as affordable as possible. The lowest price allowed at Booster.com is $15.

Now  is the time to order your shirt for September or October!

We know that hundreds of you already have our shirts. But who wore it best? Share your best Scan, Treat, Repeat tshirt pictures on MBCN’s Facebook page or email them to us at mbcntshirts@gmail.com.

 

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN's shirt last Oct. 13 in Chicago.

Rebecca DelGaldo and her Integrated Project Management colleagues rocked MBCN’s shirt last Oct. 13 in Chicago.