Sheila’s Journey to Fight Metastasized Breast Cancer

July 2, 2014

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.

ImageFirst 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!


Finding Financial Assistance

January 12, 2014

JarcoinsWe frequently field inquiries about financial assistance for direct medical costs (co-pays, deductibles), related non-medical costs (transportation, gas, child care) or daily living expenses (rent, utilities). Note that MBCN does not give direct aid, and, as an all-volunteer operation,  lacks the resources to provide one-on-one advice.  But we wanted to offer these general  suggestions–if you have a tip, please comment below!

Many agencies budget a certain amount of financial aid per year. Once they have disbursed their annual allocation, that’s it until the following year. Some national cancer non-profit groups can direct you to sources of aid in your community–but few offer direct financial help themselves. With some research, you can find sources of help in your community. If you lack the time or computer access to investigate these organizations, recruit a relative or friend to help you!

Don’t automatically assume you won’t qualify because you are working, have insurance or are too young or too old. One of our members offers this example: “I have bone mets and have been getting a monthly bone-boosting shot for years. Because I am employed and have insurance, I assumed I didn’t qualify for co-pay assistance and I never asked about it. But the drug maker actually has a program for people just like me that will save me thousands of dollars. Every penny counts–I wish I had looked into this sooner!”

Talk With your Health Care Team. Often a social worker or financial person at your hospital or infusion center can offer suggestions and direct you to local resources.

See What is Available. Cancer Care, a national organization has a very helpful booklet, A Helping Hand- The Resource Guide for People with Cancer. You can view the document online or order a copy. You can also contact Cancer Care at 800-813-4673 and speak to one of their professional oncology social workers, who will guide you through the process.

Check with Individual Pharmaceutical Companies. Almost every pharmaceutical company has patient assistance programs to help patients with the co-pay for specific drugs. The website is usually the name of the drug. So, for example, if you are taking Herceptin and need information on assistance with co-pays, go to  www.herceptin.com. Similarly,  for Afinitor: go to www.afinitor.com.   For Xgeva, see www.xgeva.com.

Call 211. Many communities have a 211 information and referral service, funded by The United Way.  Simply call 211  or go to : www.211.org to find help with food, housing, employment, health care, counseling and more. Available in English and Spanish.

Check the Database to Find Help in Your Area. The Cancer Financial Assistance Coalition (www.cancerfac.org) is a group of 14 organizations who provide a searchable database of resources available to you based on your diagnosis and zip code.  You simply enter both and will then get a list of organizations who may be able to help you, including those local to your state or area.

Know your Social Security Disability Options. Many people diagnosed with metastatic breast cancer, also called advanced breast cancer or Stage IV breast cancer, qualify for Social Security Disability under the compassionate allowance program. (This assumes  you have the required work history.)  This can be very helpful, if you are no longer able to work. Note that you need to have your own insurance coverage for a two-year waiting period before Medicare takes effect.  Read more on how to apply.

Early Life Insurance Payouts. A life insurance policy ordinarily pays benefits to a beneficiary after a policy owner dies. Those benefits are accelerated if they are paid directly to a chronically or terminally ill policy owner before he or she dies. Check with your insurance agent or company to see if your policy includes or offers the option. Group policies for term or permanent life insurance may also provide accelerated benefits; check with your benefits administrator.

Note that a metastatic diagnosis isn’t an automatic entitlement to an early payout; your doctor will be asked to affirm you have a terminal illness with death expected within a specific time frame (usually 12 to 24 months). Very few benefit administrators are familiar with accelerated death benefits, it’s wise to review the policy yourself and contact the insurance company directly. Here’s what some people with MBC report.

Here is just a sampling of potential sources of help:

Help Now Fund  provides emergency financial assistance to help people in active treatment with their rent and utilities: http://www.thebreastcancercharities.org/help-now-fund/

The Health Well Foundation offers assistance with copay or insurance premium payments for insured patients, based on availability of funds. They have a quick eligibility test online:
http://www.healthwellfoundation.org

Patient Access Network Foundation provides  co-pay, deductible and medication financial assistance:

PAF Financial Aid Fund Division is an independent division of Patient Advocate Foundation. It  provides small grants to patients who meet financial and medical criteria.  Patients who are interested in applying for financial assistance should start by calling this division toll free at (855) 824-7941.

Freebies and Discounts for Cancer Patients as compiled by 1 Up on Cancer:

http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/

See More Options Here.  MBCN has a website page that also lists financial resources.

Be Persistent. You may have to make a lot of phone calls and visit a lot of websites in order to get help. There are restrictions on the type and amount of aid given and organizations often have limited funds to disburse.  But hopefully your persistence will yield results and you will have some peace of mind about your financial status.

Please share this with anyone you know who is having financial difficulty because of their cancer. If you have other suggestions based on your experience, please comment below.  Thank you!


MBCN Year in Review – 2013

December 28, 2013

by Shirley Mertz, Metastatic Breast Cancer Network President

As we approach the end of the year, I want to report to you what MBCN has accomplished in 2013– with your help and support.

We created a new logo this year to better reflect our mission—educating, empowering and advocating.    mbcn_rgbVHKversion

Here are the major activities of 2013  and how they supported our mission:

EDUCATING AND BUILDING AWARENESS

Dr Don Dizon answering a question during his talk on Living with MBC.

Dr Don Dizon answering a question during his talk on Living with MBC

•  Our 7th annual national metastatic breast cancer conference in cooperation with experts at MD Anderson in Houston, Texas.  Over 225 patients and caregivers attended the September 20-22 event.  All the presentations were recorded and are on our website.

brochureMBCN partnered with Living Beyond Breast Cancer to develop and write an expanded booklet called, “Guide for the Newly Diagnosed Patient.”  It can be ordered for free or downloaded on our website.  We urge members to take copies to their oncologist’s office so patients can benefit from it.

•MBCN expanded the amount and kind of information on our website (mbcn.org).  There patients can find our national conferences’ recordings; info about clinical trials, pain and supportive services; financial resources,  inspirational stories from those living with our disease; and advocacy strategies.

•Our new T-Shirt was popular and part of our October 13 MBC Awareness Day campaign.tshirt

•Our short videos were also well received, especially during October.

how do you live

How do you LIVE with metastatic breast cancer?

useyourvoice

Use Your Voice

thingspplsay

Dumb things people say about metastatic breast cancer

caregivers

Celebrating caregivers

 

•Each day in October we posted a Fact a Day on Facebook for you to share with friends and spread education and awareness of living with metastatic disease. See the 31 Days of October.

• At the San Antonio Breast Cancer Symposium (SABCS), MBCN was part of a panel that explained clinical trials to other patient advocates and the challenges facing metastatic patients to decide and participate in clinical trials.

•MBCN partnered with Novartis to develop and edit an online magazine for caregivers of metastatic breast cancer patients. cate


EMPOWERING

 •At our annual conference, a special session on how to advocate on behalf of the metastatic community was developed and presented to attendees.  An “Advocacy Kit,” complete with instructions and tools, is on our website for any patient, family member or supporter to use.

•MBCN has guided, informed and empowered several patients and/or their supporters who want to host an educational and/or fundraising event in their community or local hospital.  See our fundraising section on the website.  MBCN provides free materials for these events.

•MBCN encouraged its members to participate in quality surveys that sought to identify challenges and concerns of patients.

•MBCN provided opportunities for our members to speak out in videos and focus groups, such as these:

livingthereality

Living the reality of metastatic breast cancer

 

livingwithmbc

Living with metastatic breast cancer – MBC Alliance video

ADVOCATING

alliance • Based on a vision by MBCN, the Metastatic Breast Cancer Alliance was formally announced to the public this year during our Metastatic Breast Cancer Awareness Day campaign.  The MBC Alliance consists of 16 breast cancer organizations who have joined together, driven by a vision to transform and improve the lives of women and men living with metastatic breast cancer.  See my remarks at our first face-to-face meeting.

 •MBCN partnered with SHARE to develop and participate in a webinar for experienced and new oncologists entitled, “Communicating Hope and Trust:  The Patients’ Point of View.”

•MBCN has a seat on the Board of Directors of the National Breast Cancer Coalition.  We advocate on behalf of Breast Cancer Deadline 2020 to find the causes of metastasis and participate in strategic planning and implementation of that goal.

•MBCN served on the Global Advocate Planning Committee to organize and plan sessions for global advocates at the Advanced Breast Cancer 2 Global Conference in Lisbon where doctors discuss and decide on treatment guidelines for the disease.  The advocates discussed common global challenges facing patients with metastatic disease. MBCN reported on the findings of a US survey of metastatic breast cancer patients that asked patients about quality of life issues.

Those are the highlights of 2013 and we are planning an ambitious year for 2014!

If you have questions for us, or ideas you want to share, please leave your comments below or contact me directly at s.mertz@mbcn.org.

Sincerely,

Shirley Mertz
President, Metastatic Breast Cancer Network

Metastatic Breast Cancer News from San Antonio: Stay Tuned

December 10, 2013

reblogged from Katherine O’Brien’s Ihatebreastcancer blog:

Metastatic Breast Cancer News from San Antonio: Stay Tuned.


Lessons from a breast cancer widower

October 10, 2013

By David Imondi

I dread October. I change the TV channel when all the pink ribbon commercials come on. I understand why my wife hated pink ribbons. There was nothing pretty or delicate about the disease that ravaged and killed her at age 47. My wife was Dr. Suzanne Hebert Imondi. She was your vice president. She was my true love.

Yesuzannears ago, Suzanne asked me to share my experience as a “cancer husband” to help MBCN members. I never did. Now, I write this as a heartbroken widower who is trying to raise two young kids without their beloved mom.

I thought I was a good Cancer Husband. I spent countless hours in waiting rooms in cancer centers from Boston to Houston. I slept sitting up for weeks in uncomfortable hospital visitor chairs by Suzanne’s bedside. I kept a large binder with me with copies of PET scans, path reports and lab values. I used a label maker to make sub-divisions and taped physicians cards to the inside cover. In retrospect, I think I was trying to control a disease that could not be controlled.

If I could offer some meager advice to all of those battling metastatic breast cancer and their loved ones, it would be to try to hold on to those moments of happiness when they come. Suzanne and I lived from scan to scan. We would go over the PET scan results and anxiously highlight the areas that were too many times described as “lesions that could represent further metastasis.” Don’t wait for “clean scans.” They may never come. Go to Disney or rent a villa in Italy before the next scan. Lean hard into joy. Sometimes we forget to live while we’re trying not to die.

Please write lots of notes and record videos for your loved ones. Suzanne did not like the finality that those things implied. But now I see how our brave, beautiful kids cherish every note she ever wrote to them. It helps keep them constantly connected to her.

Lastly (and most difficult for me to discuss) remember to say everything you need to say to the people you love. Even though Suzanne lived over 7 years from her initial metastatic breast cancer diagnosis, I thought we had more time. The end happened more quickly than I expected. I thought I had had more time to remind her that even with no hair and draped in hospital green, she was the most beautiful girl I had ever seen. I thought I had more time to tell her how she was the best thing to ever happen to me. I thought I had more time to just hold her and tell her how much I loved her.

I am sorry I don’t have more to offer all of you brave women fighting this disease. Please do know that your courage inspires many. Know that your Cancer Husbands, like me, would give their lives to lift your pain even for a minute. Most of all, know that you will never, ever be forgotten…..

Editor’s note: Thank you, David for this beautiful and heartfelt letter. If you are reading this and are also a single father due to cancer, you may be interested in this website: http://singlefathersduetocancer.org/home.do


New Survey on MBC Symptom Control

September 5, 2013
MusaSm

MBCN urges you to participate in this important survey—the MBC Symptom Control Survey, designed by respected, long-time metastatic breast cancer advocate Musa Mayer.

If you are living with metastatic breast cancer, please take part in this brief survey about how you and your treatment team are dealing with the symptoms and side effects you have from your metastatic breast cancer and its treatments.

Image

Advanced Breast Cancer 2nd International Consensus Conference

The Survey results will be featured in a presentation at ABC2, the Advanced Breast Cancer Second International Consensus Conference, to be held in Lisbon, Portugal, November 7-9, 2013, and shared on the  AdvancedBC.org  website immediately after the conference.

The survey should take about 10-15 minutes. Your answers will be anonymous, and no information will be collected that could identify you. Please forward this invitation to anyone you know who is living with MBC.

Complete this survey and let your voice be heard!

Survey link:  https://surveymonkey.com/s/MBCSymptomSurvey

We at MBCN urge you to participate!


The Long View of Breast Cancer Research

February 9, 2013

GlauraNBCC1uest blogger: Laura Nikolaides, MS, Director of Research & Quality Care Programs, National Breast Cancer Coalition (NBCC)

Thank you, Laura for allowing MBCN to reblog your remarks on the breast cancer research landscape and on NBCC projects and priorities, given during the opening plenary of the Collaborative Summit on Breast Cancer Research in Washington D.C., held January 31- February 1. The goal of the Summit was to gather researchers, funders, advocates, and industry representatives together to assess the breast cancer research landscape and to develop collaborative projects for moving forward.

 We have added emphasis and subheadings to some sections. Original blog at: Laura Nikolaides Speaks at Collaborative Summit on Breast Cancer Research in Washington, DC

WHAT ABOUT OUR DAUGHTERS?

I am excited to be here and to have the chance to talk about the bigger picture of breast cancer research, where we have been and where we should be going. So much of the year is spent down in the weeds when it comes to breast cancer research, when we attend the ASCO meeting or SABCS, or when we review grant proposals, so it is gratifying to have this opportunity to for all of us to pull our heads up from the weeds and to discuss the long view.

And for me, the long view, means thinking about my 13-year-old daughter. Where do we need to be by the time she and her friends are adults? Are we on track?

Will things be dramatically different in ten, twenty, thirty years when it comes to breast cancer?

Or will mothers, grandmothers and young women and even men still be dying of breast cancer? Will we know by then why breast cancer cells can lay dormant for 15 years to reemerge and metastasize? Will we know how to eliminate those dormant cells from the beginning? And what about women who have aggressive disease from the get-go. Will we understand why it developed and more importantly know how to stop the progression for the long-term?

TOO MANY QUESTIONS REMAIN UNANSWERED

Unfortunately, I don’t see dramatic change on the horizon with current approaches.

The ACS [American Cancer Society] predicts that over 300,000 women will be diagnosed this year with in situ or invasive breast cancer. Dr. Gil Welch and others predict that between 30 to 50% of those could be considered overdiagnosis. We continue to add more women into the equation, putting them at risk of harm from treatments, and yet, are we seeing a difference in the measures that matter? Yes, we have seen steady, incremental declines in breast cancer mortality since the early 90s, but there has been no acceleration in this decline. And do we know what this really means? What IS working for women and what is not? Do we know how many women have died from the treatments? Do we know if death from breast cancer is being delayed rather than prevented? Are we really any closer to knowing how to prevent breast cancer or a breast cancer death for an individual woman?

NO REAL PROGRESS ON THE METASTATIC FRONT

What we do know is that the rate of diagnoses of Stage IV disease has remained constant for 30 years. What we do know is that 40,000 women and men will die from the disease again this year. What we do know is that the median survival for metastatic breast cancer has remained constant, at about three years.

With billions in resources and decades of effort, we see discovery of new targets, and development of new agents, that extend life by three to four months at a time, if we are lucky. We are learning a lot about the DNA of breast tumors, and the layers of complexity involved, but are we really gaining a better understanding of the why and how of breast cancer? The kind of understanding that will allow for development of gamechangers?

A pharma analysis report prepared a few years ago concluded that with what is currently in the pipeline, and based on historical trends, the median survival for metastatic breast cancer will inch forward from three years, to three years and six months by the year 2021.

Important progress and critical efforts, yes, but is it good enough? No, it is not good enough. We can and must do better. We need new approaches to complement the old ones. We need new ways to look at the disease. We need to find approaches that give us hope of doing better. Targeting of mutations alone, in a disease that constantly grows and mutates, will never be enough.

NBCC’S 2020 DEADLINE TO END BREAST CANCER

In 2010, NBCC set a deadline. By the end of the decade we need to understand much more about metastasis and about development of primary breast cancer, so that we can prevent deaths and end this disease. The deadline is a tool to cause disruptive change.

The purpose is to shift the focus, to look at the disease differently, to consider new approaches that give us hope of doing better.

How do we get there?To achieve success we have to do more than bring everyone together who works in the field, increase funding, and see what happens.

We need to demand more focused research with the end results in mind. We need to bring new perspectives to the table. We need more translational research. And we need to measure what matters. It may just take having specific goals in mind, timelines, and yes, deadlines to get us there.

Many say to us, that’s not how science works. But, I know how science works. I did graduate work in nutritional biochemistry at Cornell University, I carried out a large thesis project involving lactating rats, looking at the impact of malnutrition on milk composition. I know that science works by asking questions, and figuring out how to test theories about the answers to those questions.

SCIENTISTS CAN MEET DEADLINES

So what if we can all agree on what those questions should be? Questions that will help drive us to an understanding of how to prevent deaths from breast cancer? Science can work towards meeting goals and yes – even meeting deadlines. I know I had to answer my research questions in a certain time to finish my thesis and graduate. Scientists meet deadlines all the time.

Right now, in the field of breast cancer research, we have many people asking many questions in an infinite number of directions. We are producing incredible volumes of information. But for all of that effort we are seeing minimal benefit for women. Something has to change.

We need leadership and coordination of efforts, sharing of information, all of us working together on common goals. We need the will to ask the right questions, and the resources to explore those questions. And then we have to measure what matters to judge success.

PATIENT ADVOCATES AND RESEARCHERS COLLABORATIONS

NBCC has spent the last two years exploring how to do this on a small scale with what we call Artemis Projects. These are a series of collaborations among patient advocates and researchers from diverse perspectives. The purpose of the collaborations is to develop strategies, research plans and timelines for answering key breast cancer questions. Patient advocates are there to make sure efforts are always focused on the end result.

The first of our Artemis Projects was launched in 2011, bringing together a group of advocates and scientists to take a strategic, systematic yet broad approach to the development of a breast cancer preventive vaccine within five years. We bring together a group of close to 40 each year to assess progress and to readjust plans. We also hold smaller meetings to bring together experts to bear on particular issues as needed, and have an online community for the project to keep things moving in between meetings.

SEED GRANTS TARGET VACCINATION RESEARCH AND MORE

As most of you know, we don’t typically fund research directly. But through the generous support of National Philanthropic Trust (NPT), NBCC has awarded two seed grants as part of this project, one to Dr. Paul Spellman and Dr. Joe Gray of Oregon Health and Science University to identify possible vaccine targets using existing and developing human genomic data within different breast cancer subtypes.

And a second seed grant was awarded to Dr. Paul Ewald at the University of Louisville, and Dr. Vladimir Belyi of The Cancer Institute of NJ to look at infectious agents and breast cancer. Bioinformatic tools will be used to take a systematic approach to intersect the genomes of known viruses and a broad array of cellular pathogens to identify their presence and prevalence in breast cancer genomes relative to normal breast tissue. Initial data from both of these seed grants will be presented at the next annual meeting in March.

MORE METASTATIC RESEARCH

We will also be kicking off a second Artemis Project on Metastasis in June to focus on tumor dormancy.

As with the Artemis Project on the Preventive Vaccine, our goal is to bring together investigators with diverse perspectives to brainstorm and develop innovative strategies for accelerating progress.

EYES ON THE PRIZE

In summary, I think we do have the will and the resources to come together on asking the right questions. We have heard from others this morning about new initiatives focused on prevention and metastasis. I see positive steps being taken to prove that pharma analysis wrong. If we can keep the end result in mind, where we want to be when all of those 13 year olds are 21 year old adults and beyond, I feel hopeful we can change the course. I look forward to the rest of the meeting for further discussion on how we are going to get there. Thank you.

Editor’s note: Shirley Mertz will represent the Metastatic Breast Cancer Network at the Tumor Dormancy Summit in June.