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 Similarly,  for Afinitor: go to   For Xgeva, see

Call 211. Many communities have a 211 information and referral service, funded by The United Way.  Simply call 211  or go to : 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 ( 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:

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:

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:

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:


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 (  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?


Use Your Voice


Dumb things people say about metastatic breast cancer


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


 •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:


Living the reality of metastatic breast cancer



Living with metastatic breast cancer – MBC Alliance video


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


Shirley Mertz
President, Metastatic Breast Cancer Network

Some Quick Facts About Hereditary Breast and Ovarian Cancer Following Angelina Jolie’s News

May 15, 2013

Re-blogged from

   by Katherine O’Brien

Angelina Jolie’s announcement that she is a carrier of the BRCA1 mutation and her subsequent decision to have a preventive double mastectomy has prompted a lot of discussion.

One question Jolie doesn’t touch on: the Supreme Court is currently determining if human genes can be patented. Myriad owns or licenses two human genes linked to breast and ovarian cancer. If you need BRCA1 or BRCA2 testing, as Jolie did, Mryiad has your fate in their hands. The Supreme Court ruling is expected in June 2013. We’ll look at that issue in a separate post.

In the interim, here are some basic facts about breast and ovarian cancer:

      • Most cancer  just happens–it’s sporadic vs. hereditary. The majority of people who develop breast cancer didn’t inherit an abnormal breast cancer gene and have no family history. But about five percent of people have a genetic mutation which predisposes  them to cancer.
      • Two abnormal genes BRCA1 (BReast CAncer gene one) and BRCA2 (BReast CAncer gene two) are associated with a higher lifetime risk of developing breast and/or ovarian cancer. (FYI, I do NOT have this mutation, my cancer is considered sporadic; I may well have some mutation for which there’s currently no test.)
      • From the NCI FAQ: A woman who inherits a harmful mutation in BRCA1 or BRCA2 has an increased risk of developing breast and/or ovarian cancer at an early age (before menopause) and often has multiple, close family members who have been diagnosed with these diseases. Harmful BRCA1 mutations may also increase a woman’s risk of developing cervicaluterine,pancreatic, and colon cancer (12). Harmful BRCA2 mutations may additionally increase the risk of pancreatic cancer, stomach cancergallbladder and bile duct cancer, and melanoma(3).
      • All of us have BRCA1 and BRCA2 genes according to ” The function of the BRCA genes is to repair cell damage and keep breast cells growing normally. But when these genes contain abnormalities or mutations that are passed from generation to generation, the genes don’t function normally and breast cancer risk increases. Abnormal BRCA1 and BRCA2 genes may account for up to 10% of all breast cancers, or 1 out of every 10 cases.”
      • Ashkenazi (Eastern European) Jews are 10 times more likely to have mutations in BRCA1 and BRCA 2 genes than the general population. Approximately 2.65 percent of the Ashkenazi Jewish population has a mutation in these genes, while only 0.2 percent of the general population carries these mutations.
      • Note that most U.S. Jews are  Ashkenazi (their ancestors came from Eastern Europe) vs. Sephardic  (their ancestors came from Spain, Portugal, North Africa and the Middle East).
      • Having an abnormal BRCA1 or BRCA2 gene doesn’t mean you will be diagnosed with breast cancer: Only seven percent of breast cancers in Ashkenazi women are caused by alterations in BRCA1 and BRCA2 (See

Related posts:

Perils of ill-informed celebrity spokespeople (kudos to Jolie):

“Sweet Valley High” ghostwriter explores her family’s history of ovarian and breast cancer:

My experience with BRCA1 and BRCA2 testing:

Breathe in that sweet, cool November air!

November 14, 2012

I live in New Jersey and I’ve been feeling a bit weary but triumphant this November, having survived a triple threat: Hurricane Sandy which knocked out power to my town for a week, a November 7 Nor’easter which dropped three inches of snow on us and… Pinktober.

We all survived another onslaught of Pinktober and I’m happy to say that more and more of you participated in raising your metastatic voice above the cheerleading din of the ‘happiest cancer on earth’ to set the record straight and make some inroads into the misinformation that reigns.

MBCA Day October 13 2012 at the MBCN conference in Chicago

On October 13 I was at the MBCN conference (which was fabulous) and I was interviewed for some articles and media stories later in the month.

But, when I think of spreading awareness of mbc, my thoughts keep returning to a simple encounter I had with a woman with early stage cancer who was on a panel with me, Breast Cancer Perspectives, held at our local YMCA. The program was poorly attended because of the weather and lack of publicity, but it was a meaningful experience for all who attended and people lingered afterwards. My fellow presenter came up to me and said, “I never thought about breast cancer from your point of view and, as I was speaking after hearing your story, I thought for the first time that what I was saying might be painful or hard for you to have to hear all the time.”  One encounter, one person whose perspective was changed.

Did anyone have a similar experience? Or maybe you wrote a letter, told your story, donated money, attended a program or conference or posted a comment online.

I’d love to hear about it.  In the Comments Section below, please let me know by completing this statement: Here’s what I did for Metastatic Breast Cancer Awareness this year:  ________________

I will be creating a page on our website for 2012 MBCAwareness activities to show that one person can make a difference.

Here’s a start to the page: a  very brief sampling of interviews, articles and letters to the editor, proclaiming the complete picture of breast cancer, including those of us living on the darker side of pink. Please feel free to send me any additional links.



Carol and her husband at the Greater Nashville Komen Walk, raising awareness of mbc

Letters to the Editor:

Metastatic Breast Cancer Knows No Month – 11/1/12 The Tennessean

Fight Metastatic Breast Cancer with Education – 10/29/12 The News Herald Northern Ohio

For some every month is breast cancer awareness month 10/4/2012


During Breast Cancer Awareness Month, We Must Not Only Celebrate Success, but Reflect on Our Limitations As Well  -American Cancer Society Dr. Len’s Blog

Where is our Metastatic Breast Cancer Celebrity Spokesperson? –  ihatebreastcancer blog

Send me the links I’ve missed by commenting below!


Ginny Knackmuhs
MBCN Board

Speaker Videos Available from the 2012 MBCN Conference

November 8, 2012

Dr. Pat Steeg – A Common Sense Approach to Metastasis Research to Achieve Results

We are happy to announce that ALL of  the SPEAKER PRESENTATION VIDEOS  from the 2012 Metastatic Breast Cancer Network’s Conference in Chicago are now on our website and available for viewing.

Review the sessions you attended or watch any of those that you were not able to see. If you were not able to attend the conference, enjoy this virtual presentation. Each talk can be viewed as full screen, so that you can read the slides more easily.

As a bonus, please note that all of our past conferences are listed on the website with previous presentations and remain there indefinitely.

Here is the link to the 2012 presentations:

If you have any difficulty viewing the videos, please email us at:

Wall of Stories: 31 days of October

October 31, 2012

We at MBCN are so honored and proud to display Our Wall of Stories of those Living with Metastatic Breast Cancer on our home page—31 stories—one for each day of October.

We want to thank all of you who contributed and helped spread the message of what it’s like to live with stage IV breast cancer. Here is a screenshot of our story writers, but please visit to click on their photos and read their stories.

Thank you!

Ginny Knackmuhs
MBCN Board member

MBCN Conference: Notes from SHARE’s Christine Benjamin

October 29, 2012

Christine Benjamin

Our friend and fellow advocate Christine Benjamin of SHARE Cancer Support posted this wonderful summary of the MBCN conference from her notes and graciously allowed us to reblog it here.

Christine is the Metastatic Program Coordinator at SHARE Cancer Support in New York City.  SHARE’s mission is to create and sustain a supportive network and community of women affected by breast or ovarian cancer. SHARE brings these women and their families and friends together with others who have experienced breast or ovarian cancer, and provides participants with the opportunity to receive and exchange information, support, strength and hope. 

All services at SHARE including informative speaker programs, in person support groups and support hotline are free. In addition, the website is available in both English and Spanish. (

Hotline number is (866) 891-2392.

From Christines’s blog:

On Saturday October 13, 2012 (Metastatic Breast Cancer Awareness Day) MBCN held its annual conference in Chicago.  The conference is one day long and packed with information covering many topics.  There are five general sessions, three breakout sessions, a couple of breaks and lunch.

1. The first general session was given by Virginia Kaklamani, M.D., Associate Professor, Division of Hematology/Oncology at Northwestern and it was entitled: Understanding MBC: How it is Followed in the Clinic and When to Use Standard Care or Clinical Trials.

Dr. Kaklamani discussed the definition of MBC, the pattern of spread based on the type of breast cancer, methods of diagnosis and follow up, and clinical trials.  She reported on the difference between each phase of clinical trials and gave a list of questions for patients to ask when considering a trial.  Here is a list of the questions she recommends:

  1. What is the reason for the trial? Why are you doing this trial?
  2. What phase is the trial?
  3. How many patients will be enrolled? From where?
  4. What kind of patients?
  5. What are the drugs being used in the trial?
  6. What kinds of tests are required?
  7. How do I know treatment is working?
  8. How often will there be CT scans?
  9. How many visits will the trial require?
  10. Where do I get treated?
  11. What is the cost to me?
  12. What is randomization?
  13. Is there a placebo?
  14. Do I know what I am receiving?
  15. Are there potential toxicities?
  16. What is the benefit of participating?
  17. Does the benefit outweigh the risk?
  18. How long will I be on the trial?
  19. What are my alternatives?

Dr. Kaklamani also suggested that potential participants be aware of whether the study is helping you or humanity in general.  This she feels might help patients make a decision to participate or not.

Lastly, Dr. Kaklamani discussed a study that is evaluating whether or not prolonged survival will result from early local therapy comprising surgery of intact primary disease, as compared to local palliative therapy only in patients with stage IV breast cancer whose disease does not progress during initial optimal systemic therapy. More information about the study can be found here:

2. Next, I attended a breakout session on Triple Negative Metastatic Breast Cancer (TNMBC) by Dr. Rita Nanda from the University of Chicago.

Dr. Nanda states several known facts about TNBC, including the following: (1) TNBC has different subtypes; (2) research about TNBC is relatively new, and TNBC is defined by characteristics it does not have; (3) as TNBC’s are genetically unstable, chromosomes are actively rearranging and gene alterations are ongoing.  She concluded that being able to subdivide triple-negative breast cancers into subcategories will help researchers identify new targets for therapy.

Targets that are currently being investigated are: Parp inhibitors, Androgen receptor, Death Receptor 5, Glucocarticoid receptor, P13K/mTor inhibitors, Jak2 inhibitors and macrophages or the tumor microenvironment.

Dr. Nanda presented a slide entitled: Why has it been so hard to find a treatment?  The slide goes on to state that “TNBC is not one disease, PARP inhibitors and anti angiogenic inhibitors likely benefit only some women with TNBC (and it is not know which women will benefit), Tumors are genetically unstable and newer technologies and clinical trials hold great promise.”

The TBCRC 001: Randomized Phase II Study of Cetuximab in Combination with Carboplatin in Stage IV Triple Negative Breast Cancer by the University of North Carolina and the Translational Breast Cancer Research Consortium.  The study “assessed the clinical efficacy of the EGFR inhibitor cetuximab alone or combined with carboplatin as first-line therapy for metastatic TNBC. Cetuximab alone had minimal activity in TNBC; only 6% of patients (2 of 31) responded, although these 2 responses lasted more than 40 weeks. In the combination arm, 18% of patients (13 of 71) showed a response.” *

Some drugs that have been effective in the treatment of prostate cancer are being studied for the treatment of TNBC.  Recently more doctors are prescribing Metformin (a drug used to treat diabetes) to treat TNBC as well as atenolol (a beta blocker used to treat high blood pressure, anxiety, migraine).  Dr. Nanda states the platinum and taxane drugs are “usually the most effective.”

3. The next presentation was given by Patricia Steeg Ph.D, from the NCI.  In her lecture entitled: A Common Sense Approach to Mets Research to Achieve Results, she broke the talk down into three lessons.

Lesson 1

“What it takes to eliminate a metastasis is fundamentally different from what it takes to prevent its formation.”

Lesson 2

“Most of the compounds that have been tested pre-clinically for metastasis prevent the formation of a metastasis but don’t shrink established metastatic lesions.  ie: They work on single tumor cells/micrometastases only.”

Dr. Steeg spoke about a study involving a LPA1 Inhibitor which showed the primary tumor size was unaffected by the LPA1 Inhibitor.  What the study did not report is that the tumor size was unaffected for the period of study which was ten days.  At 70 days, however, significant changes in tumor size were noted.  Seventy days was outside the scope of the study and therefore findings were not deemed significant.

In another study, Dr. Steeg showed a slide referring to Ki67 Staining of Primary Tumors.  Dr. Steeg said this study “blew her mind” because a drug made by Debio, which was developed for fibrosis, caused significant changes in primary tumor.  Debio gave us [who is “us?”] the license for the drug, but another pharma Amira had a similar drug that they sold to Bristol Meyers Squibb who declared they would not develop the drug for two indications.  It was discovered another pharmaceutical company has a similar drug and is now in negotiations with the NCI.

Lesson 3

“The Clinical Trial System is not set up to validate a metastasis prevention drug (unless it also happens to be a cytotoxic or synergize with chemo). If done right, metastasis prevention drugs could prevent initial metastasis in high risk patients and limit the development of more metastases in metastatic patients.”

Basically Dr. Steeg feels that “we are approaching metastasis from two different directions,” where oncologists want to shrink the tumors of patients with metastatic disease while other researchers want to prevent the formation of mets and additional mets.

4. Living with Metastatic Breast Cancer for those Under 40

Moderated by Roz Kleban, L.C.S.W, Memorial Sloan-Kettering Cancer Center

A panel of four young women living with MBC talked about their disease, their lives, their fears and hopes.  The conversation was opened up to the audience and most of the young women in attendance participated.  One woman stated that once she was diagnosed with MBC she was “no longer part of a community where I was once embraced,” referring to the broader breast cancer community.  Others expressed concern about leaving their children, worrying about children with special needs, wondering if their kids will remember them.  One woman talked about the stress of losing friends to the disease, saying “when my friends die, it’s like watching my own death.”  Many discussed their feelings of jealousy towards friends not living with MBC as they plan their weddings and births of their children.

5.  How Do I Find a Clinical Trial?

Elly Cohen, Ph.D

Program Director,

Dr. Cohen discussed the different phases of clinical trials and gave a live demo of the newly designed and how best to find a clinical trial.

6.  Treating Pain and Neuropathy

Judy Paice, Ph.D, RN

Director, Cancer Pain Program at Northwestern

Dr. Paice discussed different types of pain including nociceptive pain which is the aching, throbbing sort of pain one might feel in the bones.  There is visceral pain that is associated with cramping.  She states it is important to be able to describe pain accurately to doctors so the right medication can be prescribed.  Dr. Paice suggests keeping a diary or journal indicating the type of pain, time of day, location of pain, what it feels like, intensity, medication taking, dosage and any other information that might be relevant.

Chemo Induced Peripheral Neuropathy is a common occurrence with certain types of chemotherapy.  CIPN usually occurs in the hands and feet and can affect balance as feet may not feel the floor as they have before.  There are some agents that may be helpful to some who have CIPN:  Calcium, Acetly Carnitine, Duloxetine, Glutathione, Oxcarbazepine, Zaliproden, Venlafaxine.

In addition to opioids and non-opioid drugs that may help CIPN, Dr. Paice discussed non-pharma therapies such as integrative therapies like acupuncture, physical measures such as PT, OT and exercise, and cognitive behavioral therapies.  She stated it is important to exercise or keep moving.

7.   Emerging Research-Hope for Improved Outcomes for the Future

Dr. Steven Rosen

Genevieve Teuton, Professor of Medicine

Director, Robert H. Lurie Comprehensive Cancer Center, Northwestern

Dr. Rosen discussed Biological Response Modifiers (BRM’s). According to, biological response modifiers are “substances that stimulate the body’s response to infection and disease. The body naturally produces small amounts of these substances. Scientists can produce some of them in the laboratory in large amounts for use in treating cancer, rheumatoid arthritis, and other diseases.”

BMR’s include monoclonal antibodies, recombinant toxins, vaccines, adoptive immunotherapy, interferons and cytokines, hormonal agents, signal transduction modifiers, transcriptional regulators, anti-sense compounds, angiogenesis inhibitors, proteasome inhibitors, metabolism inhibitors and DNA repair inhibitors.

There are currently a few FDA approved monoclonal antibodies including Herceptin (Trastuzumab), Perjeta (Pertuzumab) and the newest monoclonal antibody drug conjugate Trastuzumab Emtansine or T-DM1 discussed in the EMILIA trial.

Recombinant toxins are proteins made by genetic engineering consisting of a toxin fused to a ligand which binds selectively to a target cell. Recombinant toxins used for cancer treatment generally contain either a growth factor or a recombinant fragment of a monoclonal antibody fused to a truncated bacterial toxin, derived either from Pseudomonas exotoxin or from diphtheria toxin, according to One recombinant toxin linked with diphtheria toxin is approved for clinical use in advanced stage T-Cell lymphoma.  Dr. Rosen showed the slide below of a patient covered with lesions before receiving treatment and a photo of the patient after treatment.  There was great improvement in the number of lesions.

Next Dr.Rosen discussed vaccines which produce “modest benefits” but did refer to a vaccine for prostate cancer that has been approved by the FDA. He also talked about  epigenetics which controls genes and the identification of a second layer of controlling genes that is being looked at in leukemia drugs.

Antisense Oligonucleotide Inhibitors essentially “turn off” genes by binding to the messenger portion of the RNA and inactivating it.  Dr. Rosen says Isis Pharma is developing a drug for large cell lymphoma that is showing “great results.”

Dr. Rosen also discussed metabolism inhibitors, DNA repair inhibitors and nanotechnology or nanoconstructs which are FDA approved including Abraxane.

8.  The last session of the day was presented by Shirley Mertz, MBCN Board Member and woman living with metastatic disease.  The session was entitled, Advocacy: Use your Voice to Change Outcomes for MBC.   Shirley spoke about the AIDS movement as a model for advocacy in action.

All presentations will be available on-line on the MBCN website:

Pam Breakey’s MBCN Chicago Notebook Part 2: Selected Breakout Sessions

October 26, 2012

Editor’s Note: MBCN’s 6th Annual National Conference (“Moving Forward With Metastatic Breast Cancer,” took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago. In a few weeks, videos and presentation handouts will be posted at In the interim, here are some highlights from selected breakout sessions, from attendee Pam Breakey.


Hormone Positive Metastatic Breast Cancer

Ruta Rao, M.D., Assistant Professor in Hematology/Oncology, Rush University Medical Center

 Dr.Rao highly recommended having biopsies of the metastatic site:

• to verify metastases

• to determine if receptors have changed from the primary to metastatic site.

She quoted a Swedish study that found changes of 34% in hormone receptor positive mbc and 14% with her2neu positive mbc.

In monitoring treatment, physical exam, labs, CBC, Chem. Panel, tumor markers, scans are used. When a drug is effective, it is generally continued until progression or toxicity. Tumor markers not used alone but with scans, history and physical exam.

She discussed “visceral crisis”—rapid progression or large disease burden with significant symptoms, often beginning in the chest.

Endocrine treatment is often stopped when a patient has had no response to 3 consecutive hormonal treatments or is in visceral crisis. Chemo is used then.

She talked some about specific hormonals—my note taking could not keep up!

Dr. Rao spoke softly but audibly and was understandable. This was a large break out session.

Pam Says: I have a pro Rush University Medical Center bias— I did my Clinical Pastoral Education (Chaplaincy Internship) and then worked part time in that system for over 2 years, enabling me to incur no more student loan debt during seminary. I appreciated that the physicians that I encountered were very open with patients when any mistakes, including errors leading to death, were made. I had very positive experiences with the ethics committee within the Rush system and liked that chaplains were always involved in end of life care.


Treating Bone Metastases

William Gradishar, M.D., Professor of Medicine in Hematology/Oncology Division, Northwestern University, Director of Maggie Daley Center for Women’s Cancer Care

>As treatment extends lives, there are more long term issues with bone mets, largely QOL issues.

>In the US, 400,000 new patients a year develop bone mets.

>Of those with mbc, 68% have bone mets.

>Of those with multiple myeloma, 51% have bone mets,

>Of those with metastatic prostate cancer, 49% have bone mets

>Of those with metastatic lung mets, 48% have bone mets.

(These stats may be of SRE(skeletal related event) rather than bone mets…..hope somebody else who attended can help me here!)

SRE-skeletal related event—from bone mets, these have symptoms and consequences such as pain, fractures, need for surgery or radiation.

SRE stats

  • Pathologic fracture 52%
  • Radiation Therapy 43%
  • Surgical intervention 11%
  • Spinal cord compression 3%

>12 months median time to SRE

>26.7 months median survival

>As we live longer, more SRE…

>Bisphosphonates have been available for 15-20 years and delay SRE and need for opiate pain meds.

>The ideal dosing schedule is not known…..every 1, 2, 3 months are often used.

>“Mab” at the end of a drug name means it is an anti body.

Q & A

A question was asked about spread to other organs when one has only bone mets—he came down in the camp that believes that cancer cells are already present but not detectible

>Osteo blastic—build up bone

>Osteo lytic—break down bone in healthy bone there is a cycle that includes both

Pam Says: Dr. Gradishar was also easy to listen to. I wish this session had been longer and included hand outs! I found him likable, too.


Living With MBC for those over 40

moderator Roz Kleban, LCSW, Clinical Social Worker, Memorial Sloan-Kettering Cancer Center

Pam Says: I was on the panel for this presentation and cannot be objective.

Panelists did little but introduce themselves and the discussion was lead by the moderator who invited and encouraged audience participation. Most questions were about family relationships, especially problematic ones.

(I had thought a lot about what I might want to say and am writing up some notes, which I can post here…with a disclaimer that what has been useful for me and what I think I have learned are not universal!)

About Pam Breakey: Pam is a retired psychotherapist and Episcopal priest who has been living with de novo metastatic breast cancer since March, 2004. She and her husband of eleven years, Mike, a retired police officer, live on ten acres in the SW Michigan woods where they compost, grow flowering plants and feed the birds and a feral cat. Pam is active member of

Pam says her two- year-old granddaughter and her pets teach her a lot about living in the moment. She values questions over answers and views life as a journey.

Pam Breakey’s MBCN Chicago Notebook Part 1: General Sessions

October 25, 2012

Editor’s Note: MBCN’s 6th Annual National Conference, “Moving Forward With Metastatic Breast Cancer,” took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago. In a few weeks, videos and presentation handouts will be posted at In the interim, here are some highlights.

We had a great time at Friday’s pizza party and we learned a lot from all of the presentations on Saturday. Among our 200+ attendees, the prize for the best notes goes to our friend Pam Breakey. We were so impressed with the summary she shared at, we asked if we could repost it as a two-part guest blog and Pam graciously agreed.

For those who don’t know her, a quick introduction: Pam is a retired psychotherapist and Episcopal priest who has been living with de novo metastatic breast cancer since March, 2004. She and her husband of eleven years, Mike, a retired police officer, live on ten acres in the SW Michigan woods where they compost, grow flowering plants and feed the birds and a feral cat.

Pam says her two- year-old granddaughter and her pets teach her a lot about living in the moment. She values questions over answers and views life as a journey.

Take it away, Pam!


Understanding MBC: How it is Followed in the Clinic and When to use Standard Care or Clinical Trials

Virginia Kaklamani, M.D., Associate Professor, Division of Hematology/Oncology at Northwestern

Some Basics…

  • Metastatic Breast Cancer is the breast cancer that has spread to distant organs.
  • Mets are not always “the same” as the primary lesion and therefore the importance of getting biopsies of the metastatic lesions has recently been recognized and made part of the staging/evaluation process.
  • There have been incremental increases in survival time since the 1970s.
  • In following patients, asking the patient “how are you doing” is the most useful. Goals are for treatment to work and to maintain quality of life.
  • Scans used are often CT, bone scan and PET.
  • Tumor markers used include: CA15-3, CA27-29, CEA, and CA125. TMs should be interpreted in conjunction with scans, which are generally done every 3 months and stretched to every 6 months when cancer is stable.

Treatment Goals: Yours & Your Doctors

Patients and physicians (oncologists) often have different goals of treatment. While patients want increased OS (overall survival) of a year or more and good QOL (quality of life), oncs often look at much shorter OS (4-6 months) as a desirable goal. This illustrates the importance of good patient-oncologist communication and decision making!

[Editor’s Note: Dr. Kaklamani was speaking in the context of clinical trial goals.]

Clinical Trials

Clinical Trials are research studies using people. Patients need to know what type of trial they are considering.

Phase I—looks at dose and toxicity and uses very small numbers of patients

Phase II-looks at effectiveness and uses small numbers of patients

Phase III-compares the study drug/treatment to standard drug/treatment and uses larger number of patients

Phase IV-post marketing study

Example of how a patient might benefit from a clinical trial—a patient with large brain mets plus at least ten other mets has WBR (whole brain rads) and a trial oral chemo. Patient has good response, is able to obtain A s in college and feels well. Ta-da—much happy dancing.

Questions for Patient to Ask When Considering a Clinical Trial:

• What is the reason for the trial?

• Which phase is it?

• How many patients are enrolled?

• What kind of patient is being looked for?

• What drugs are involved (both experimental and control)?

• How would I know that treatment is working?

• How often and for how long would I have to come to the hospital/clinic where the trial is being done?

• What is the randomization?

• Is there a placebo being used?

• Will I eventually be informed of what drug I was getting?

• What are the potential toxicities, side effects?

• Is there a standard treatment?

• What is the potential benefit to me?

• Does the benefit outweigh the risks?

• What will the financial cost be to me?

• What are my alternatives?

During Q & A—she stated that for us over age 30, exposure to radiation is not a problem. She also said that as time goes by, there are more generic drugs available to us and that those are good options.

Pam Says: I found Dr. Kaklamani to be easy to listen to and I thought that her patients probably like her a lot—I think I would! She seemed very approachable and down to earth.


Research on Treatments to Contain Metastatic Growth

Patricia Steeg, Ph.D., Chief of Women’s Cancer Section and Director of the Molecular Therapeutics Program, Center for Cancer Research, National Cancer Institute.

In a nutshell:


Dr. Steeg did not jump up and down or scream, but she emphasized this and has before and undoubtedly will again. Perhaps that might be our new mantra as metsters.

Most of the compounds that have been tested pre clinically for mets prevention that have showed promise do nothing to shrink established metastatic lesions, i.e., they work on single cells or micro mets only. It just is not known what causes dormancy or what ends it.

The current system of clinical trials is not set up to validate a metastasis preventing drug.

Editor’s note: And as metsters we need both kinds of drugs: those that eliminate or shrink a metastasis and those that will prevent new ones from forming. Unfortunately the current system is set up just to test those that shrink a metastasis and NOT those that will prevent new ones.

She mentioned Ann Chambers of Ontario as the “best researcher on mets.”

Pam Says: If you want to watch just one of the videos that will be posted to the MBCN website from this conference, I would recommend this one. Or the one by Dr. Kaklamani.

This was at least the third or fourth time I have heard Pat speak. She is very gifted at explaining complex biology and cell behavior to lay people. If I had pots of money to give for mbc research, I would give it to Pat. I find her highly approachable and very willing to talk with us.

Editor’s Note: The Metastatic Breast Cancer Network presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award to a thunderous ovation from our attendees.


How Do I find a Clinical Trial

Elly Cohen, Ph.D., Program Director,

Three websites mentioned:

1. was relaunched this spring At their site, you can put in info about the specific cancer, treatments used so far, etc and request notification of trials that might be a good fit.


3. NCI

Pam Says: I used one of these sites in the past and got notification of several trials but had a hard time finding specific info back on the main website and found myself spending more time than I wanted to so signed off and don’t remember which site. For anybody looking for trials, this is good info to have!


Emerging Research-Hope for the Future

Steven Rosen, M.D., Genevieve Teuton Professor of Medicine, Director-Robert H. Lurie Comprehensive Cancer Center, Northwestern

Pam Says: This poor man had the worst time slot of the conference—after lunch nap time—I found it hard to concentrate and I don’t know how much of that was timing and how much was his presentation. I am afraid I have nothing at all to report as my notes make no sense to me whatsoever!


Advocacy: Use your Voice to Change Outcomes for MBC

Shirley Mertz, J.D., MBCN board member and patient advocate

  • The HIV/AIDS community has been a great example of how a community can come together and advocate for heath care issues. They got educated, organized and active. They can be a good model for activism.
  • BC and MBC are political issues. Society attitudes about a disease are shaped by the influence of “important people” and organizations.
  • Our issues include: access to care (no insurance-no treatment), pre existing conditions, lifetime limits, denying patients treatment when it is most needed, MBCN and NBCC lobby for the Affordable Care Act
  • We need to know where our members of Congress stand on the Affordable Care Act, and where the Presidential candidates stand.
  • Key messages of October – the public think bc is solved, they don’t understand MBC, early state survivors are fearful of MBC
  • When we do advocate, we should let MBCN know.
  • MBCN and Komen had a seat at the Metastatic Cancer Round Table in Feb 2/2012. Komen is figuring out that women with MBC don’t feel represented at Komen and they are asking What can we do for metastatic bc?
  • Write to Komen or talk to the local Komen affiliate
  • Less than 5% of bc research funds go to target the metastatic process. That needs to be addressed.
  • Shirley suggests that when we are to have biopsies, we ask our docs if extra tissue can be taken for research!

Pam Says: This is the third or fourth time I have heard Shirley speak, too. She is energetic, passionate and delightful. I find her very warm and approachable and am glad that she is out there lifting her voice in advocacy for us! She was the final speaker of the conference and sent us off with a message of advocacy and an energetic one. What a great ending……

Dear Dr. Nancy Snyderman:

August 28, 2012

I was very disappointed with your story last night on NBC News about an obesity study and breast cancer recurrence. (

Most people do not understand risk factors and I would have expected you, as a journalist and doctor, to put it into context. The American Cancer Society says: “Risk factors don’t tell us everything. Having a risk factor, or even several, does not mean that you will get the disease. Most women who have one or more breast cancer risk factors never develop the disease, while many women with breast cancer have no apparent risk factors (other than being a woman and growing older). Even when a woman with risk factors develops breast cancer, it is hard to know just how much these factors might have contributed.”

So this study showed a 25% increase in risk of recurrence if you are obese. That means in laymen terms, that if the recurrence rate is 30%, then obesity will increase your rate to 37.5% (which is a 25% increase in the rate)  So instead of 3 chances in 10 of having a recurrence, an obese woman has 3.7 chances in 10. How many times now will we hear people say–she was fat, so that’s why the cancer recurred—or much more often: she wasn’t fat, so why?

Too much emphasis and story time is spent on risk factors. Most people would be surprised to know that only 15% of those with breast cancer have a family history and less than 10% have the BRCA mutations. Isn’t the real story to be reported this: The vast majority of early stage breast cancer cases and later metastatic recurrences, (which are deadly), happen without researchers knowing why?

We in the metastatic breast cancer community are bracing for October which is a grueling experience for us, with the media concentrating on prevention and early detection, placing the burden on patients to prevent their disease, and, once they get it, to be happy, proud, fighting ‘survivors.’ How about an honest story of those of us living with metastatic breast cancer who had their mammograms, ate well, exercised and had positive thoughts and still got metastatic disease?  Or an honest story about research (or lack thereof) into metastasis, (cancer spreading or metastasizing to vital organs), which is the cause of breast cancer deaths.

We’d be happy to talk to you if you’re interested.


Ginny Knackmuhs
Metastatic Breast Cancer Network (MBCN)