Survey Says: Metastatic Breast Cancer Can Be a Lonely Experience

By Katherine O’Brien, MBCN Secretary

“Jennie” was diagnosed with a metastatic recurrence a dozen years after being treated for early stage breast cancer. “What a shock,” she wrote on a discussion board for people living with metastatic disease. “But some people’s reaction has been even more of a shock.”

She described what happened when she contacted a group that hosts exercise programs for breast cancer survivors. “When I explained that I was interested but that I was currently in treatment for liver and bone metastasis, I was invited to participate but it was suggested that maybe I shouldn’t share my current diagnosis.”

Jennie says her family and close friends have been supportive, “but it is different than I was diagnosed in 2001. . .I must say I came away [from the exercise group] feeling totally unwelcome and wondering if this is the experience of others.”

Click on the graphic to see what people in the US said about living with metastatic breast cancer,

 Novartis’ recent survey of 1,273 women in 12 countries revealed that people with metastatic disease continue to feel alone and excluded. Nearly two-thirds (63%) of the women surveyed said they “often feel like no one understands what they are going through” while two in five women said they “feel isolated from the non-advanced breast cancer community.”

“When first diagnosed with breast cancer, women are instantly part of a vibrant breast cancer support community,” said Maira Caleffi, MD, President of Brazilian Federation of Philanthropic Institutions to Support Breast Health (FEMAMA). “But when their cancer metastasizes or if they are first diagnosed with metastatic breast cancer, it is no longer about becoming a survivor; it’s about surviving.”

The” Count Us, Know Us, Join Us” survey also found that on a global basis more than three in four women (77%) say they actively seek out information on their own; however, nearly half (45%) say it is hard to find information about MBC, and more than half (55%) say the information that is available does not address their needs, probably because most of the information available is applicable only to those with early stage breast cancer. In addition to lack of information and feelings of isolation, many women (41%) find that support from friends and family wanes over time.

Other survey highlights:

•  Three in four women (76%) would like their healthcare professional to address their emotional needs.
•  Two in five women (40%) say their relationship with their spouse or partner has been negatively impacted a lot or a moderate amount by their  diagnosis…
• …however, nearly all women (87%) say they receive sufficient support from their spouse/partner.

The survey is part of Novartis’ efforts to promote advancedbreastcancercommunity.org, a patient site the company relaunched in October, which is Breast Cancer Awareness Month in the US. The site, which includes links to patient videos, news and resources, initially launched with financial support from Bristol-Myers Squibb.

Join Us in Houston on September 20-22, 2013

Stories like Jennie’s are why MBCN exists. In 2004, Nina Schulman and Jane Soyer were determined to represent people with metastatic breast cancer, something no local or national organization did at that time. Shulman and Soyer attended major national breast cancer meetings, armed with flyers announcing the plans for what became MBCN. They were amazed at the dramatic response from other mets patients attending those meetings, people who longed for an opportunity to speak for themselves and be recognized in the breast cancer community.

We are proud to carry on Nina and Jane’s  work. Over the past decade, we’ve made some incremental progress. Slowly our stories are being heard and we are being represented at breast cancer conferences and gaining media coverage. But as Jennie’s story illustrates, we still have a lot of work to do to ensure our voices our heard.

Shirley Mertz, President of MBCN, tells her story to encourage others. “I have not hesitated to share my experiences with this disease because I want to motivate others to speak up,” she says. “Joining together with a focused message, metastatic breast cancer patients can improved outcomes in the clinic.”

Our annual conference offers a wonderful chance to share your story.  Mark you calendars: It will take place September 20-22, 2013 in Houston, Texas. We invite you to come–to learn about the latest developments but perhaps even more importantly to know that you are NOT alone.

Houston-area readers:  If you are interested in volunteering or doing a guest blog post with Houston travel and other tips, email Conference Chair Deb Tincher: d.tincher@mbcn.org

Our Feel-Good War on Breast Cancer: MBCN Responds

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press; Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press

By Katherine O’Brien, MBCN Secretary

Editor’s Note: Peggy Orenstein’s April 25, 2013 article–the cover story for this Sunday’ s New York Times’ Magazine, demonstrates a remarkable depth and thoughtfulness. It is long–but well-worth the effort to read. For those looking for a quick overview, we’ve prepared the following summary and added our observations where appropriate. We hope it will aid readers’ understanding of this important article as well as prompt further discussions. Please share your insights in the comment section below.

Initial Treatment and Recurrence | Journalist Peggy Orenstein wrote “Our Feel-Good War on Breast Cancer,”   subtitled “The battle for awareness has been won. So why aren’t more lives being saved?” Orenstein frames the article within her own breast cancer experience.  Sixteen years ago at 35, Orenstein had a screening mammogram that revealed early stage breast cancer. Her treatment, at that time, was a lumpectomy, as well as six weeks of radiation.

In 2012, at age 52, Orenstein had a nonmetastatic recurrence. She found the lump herself, nine months after her annual mammogram. Because of her prior treatment, Orenstein’s doctor recommended a unilateral mastectomy as well as Tamoxifen.

Early Detection Doubts | In 1996, at the time of her first diagnosis,  Orenstein credited her screening mammogram with saving her life. (“I considered myself a loud-and-proud example of the benefits of early detection,” she writes.) In 2013, following  the cancer’s recurrence, she has changed her mind.

Orenstein  details the US screening mammogram debate. The popular perception,  fueled in part by some nonprofits and pink-ribbon themed efforts,  is that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. According to Orenstein:

“Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them “early,” while they are still small, can be too late: they have already metastasized. That may explain why there has been no decrease in the incidence of metastatic cancer since the introduction of screening.”

We Say: This article can be summed up in one sentence: “Early Detection is Not a Cure.” Metastatic breast cancer can occur 5, 10,  15 or even 20 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

Overtreatment | Orenstein explains that  breast cancer isn’t a single disease. But early mammography trials were conducted before variations in cancer were recognized: “before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy.” She then raises the question of overtreatment. Dartmouth’s Gilbert Welch  co-authored a study that estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

We Say: We agree with author and patient advocate Musa Mayer who says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.” Without knowing which tumors will metastasize, we must treat all of them alike. Worse, “good” mammograms may give some women a false sense of security.

DCIS Dilemma | The article says mammograms and improved imaging technology have resulted in a dramatic increase in the number of people diagnosed with ductal carcinoma in situ (D.C.I.S.),  in which abnormal cells are found in the lining of the milk-producing ducts. DCIS and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. “D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection,” writes Orenstein. “Theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate.”

We Say: One of our few quibbles with this article is its depiction of DCIS. We agree that most DCIS is successfully treated. But  the article cites an expert who says DCIS is “not cancer but a risk factor.”  This statement creates the overall impression is that DCIS is not a big deal. Again, in most cases DCIS does NOT go on to become invasive breast cancer, but unfortunately it can and does.

Confusing Statistics |  Orenstein say that the Komen organization, a mammogram/early detection proponent,  has been accused of citing deceptive five-year survival rates. Since these allegations first surfaced, Komen has stopped using the statistic in question.

We Say: NBCC does an excellent job of addressing this common misperception:

Mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers:  The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives,  so it looks like survival for early stage breast cancer is 98 percent.

This is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. . . Women die of metastatic disease, not primary breast cancer.

Incidence has risen during the past 20 years from 1 in 11 to 1 in 8, it’s now leveling off; mortality has declined slightly but a key point is incidence of stage IV breast cancer—the cancer that is lethal—has stayed the same; screening and improved treatment has not changed this.
Source: http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates

We Can’t Manage What We Don’t Measure: When will we start collecting meaningful statistics on metastatic breast cancer recurrence?  US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between.

As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

• NCI and SEER database record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
• We say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
• We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die.

Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:

According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

There’s also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living with the disease:

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

We Say: MBCN’s slogan is “Fighting for Treatments to Extend Life.” So we appreciate Welch’s candor and dedication.  And, if we want to prevent metastasis, we may need to rethink our current approach to clinical trials.  During last year’s annual Metastatic Breast Cancer Conference, NIH’s Dr. Patricia  Steeg made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.”

Know The  Breast Cancer Facts | In her final paragraphs, Orenstein says we may have more breast cancer “awareness” but this “awareness” is fundamentally flawed: “All that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.”

We Say: Nicely done, Peggy. We’d be honored if you would join us at our 2013 Annual Metastatic Breast Cancer Conference, Sept. 21 at MD Anderson in Houston!

Mark Your Calendar: Peggy Orenstein’s article will go a long way in helping people understand breast cancer. As women living with metastatic breast cancer, we are committed to educating people about this disease. This article is a good start, but our reality remains poorly understood. That is why MBCN fought to establish  Oct. 13 as National Metastatic Breast Cancer Awareness Day. 

Let’s Keep Talking: On her Facebook post announcing the publication of this article, Orenstein said she hopes it will change the national conversation about breast cancer. We hope so, too. Peggy started the dialogue. Won’t you help us continue it?

4/29/2013 Editor’s Note: This copy has been revised to remove a disputed statistic concerning Stage II and Stage III metastatic recurrence, material that was directly quoted, as indicated,  from http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates. We will provide additional clarification if available.

4/30/2013 Editor’s Note: As noted above, we removed a disputed statistic we originally quoted from this site after some reader’s questioned its accuracy. [That sentence read in part: For Stage II and III, one-half to two-thirds will develop metastatic disease…] A Google search suggested the statistic came from one of advocate Musa Mayer’s articles. We asked her to comment, and with her permission, share her response. Musa writes:

“I can see I am indeed the source of this statistic, or rather what I wrote in the introductory section of “Silent Voices,” which was written in 2005.  I did get this quote from a text on breast cancer published in 1999, edited by Daniel Roses.  The figures come from an article on the treatment of metastatic breast cancer by Ruth Oratz, an NYU oncologist, written during the era when bone marrow transplants were still being investigated.  I think there may have been an earlier edition.

“There have been a few major advances in the adjuvant treatment of early breast cancer in the last 8 years, principally the use of adjuvant Herceptin, which has reduced recurrence by at least 50% in HER2+ disease, once considered among the deadliest subtype.  The use of adjuvant taxanes with AC regimens in triple-negative breast cancers has also reduced recurrence during these years.  Hormonal treatments have improved in a more incremental way, with the use of the aromatase inhibitors.  So all in all, I believe you can say that for women with non-metastatic disease, the outlook is better than it was even a decade ago.

“Just how much better?  It’s really hard to tell until the numbers mature over time, as we know recurrences can happen later now that more aggressive adjuvant treatment is in use.   The National Cancer Institute’s SEER database shows a steady increase in survival over time, looking at all invasive breast cancers.  For example, 1990 10-year survival was 77%, while in 2000 it was 84%.   But survival figures don’t necessarily represent significant gains, as they are distorted by the overdiagnosis of Stage I breast cancers, which have increased five-fold since the advent of mammography in the 1980’s.

“The numbers are very different in different populations, with low socioeconomic status (hence poor access to care) and African American race predicting higher mortality.  In fact the disparities in survival and mortality have only become greater as more effective treatments are introduced.

“The annual mortality rates for breast cancer, age-adjusted, per 100,000, which DO give an accurate picture of progress, have decreased from 33.1 in 1990 to 27.6 in 2000 to 21.9 in 2010.  That’s a decrease of about one third over 20 years.  Not large, but not trivial, either.”

Source: email correspondence with Musa Mayer

 

Speaker Videos Available from the 2012 MBCN Conference

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: http://mbcn.org/special-events/category/speaker-presentations/

If you have any difficulty viewing the videos, please email us at: mbcn@mbcn.org

MBCN Conference: Notes from SHARE’s Christine Benjamin

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. (www.sharecancersupport.org).

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:  http://www.clinicaltrial.gov/ct2/show/NCT01242800?term=nct01242800&rank=1

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.” *

• Source: http://www.medscape.org/viewarticle/579062

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, Breastcancertrials.org

Dr. Cohen discussed the different phases of clinical trials and gave a live demo of the newly designed Breastcancertrials.org 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 Medterms.com, 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 Pubmed.gov. 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: http://www.mbcn.org

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

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 MBCN.org. In the interim, here are some highlights from selected breakout sessions, from attendee Pam Breakey.

BREAKOUT SESSION 1:

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.

BREAKOUT SESSION 2

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.

BREAKOUT SESSION 3

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 bcmets.org.

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

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 MBCN.org. 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 bcmets.org, 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!

SESSION 1:

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.

SESSION 2:

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:

WHAT IT TAKES TO ELIMINATE A METASTASIS IS FUNDAMENTALLY DIFFERENT THAN WHAT IT TAKES TO PREVENT ITS FORMATION!!!

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.

SESSION 3:

How Do I find a Clinical Trial

Elly Cohen, Ph.D., Program Director, BreastCancerTrials.org

Three websites mentioned:

1. BreastCancerTrials.org 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.

2. ClinicalTrials.gov

3. NCI cancer.gov/clinicaltrials

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!

SESSION 4:

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!

SESSION 5:

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……

Thoughts on my 39th birthday

Guest blogger: Sandra Bishnoi

Editor’s note: Sandra wrote this piece on October 16, her 39th birthday and shared her thoughts on attending the recent MBCN conference.

The last couple of days have been very memorable. I traveled back to Chicago on Friday October 12 for the 6th Annual Metastatic Breast Cancer Network Conference. This is the first breast cancer conference that I have attended since my diagnosis and needless to say, I was a bit nervous about the experience. I knew that I was bound to learn a lot about new therapies and treatments for metastatic disease, but I was concerned about the emotional toll that the conference might bring. I was nervous about meeting young women like me, struggling to balance a life-threatening disease during the so-called “prime” of our lives.

I have to say, that I met so many amazing and wonderful women at this conference. I met women in their 30’s who had been battling this disease for over 8 years. I cried when a woman described her fear of dying before her 5 year old son was able to grow up, but who also found the strength to make dramatic life changes and truly “live” her life. There are so many people out there who are struggling with one treatment after another to try and extend their life until they can find the treatment that will lead to a “cure”. We really don’t talk about “cures” when it comes to metastatic cancer, not because we don’t want one (or many) but because of the fear of not being able to find one.

I met a lot of angry women at this conference, too. They are pissed off about having to face death before the age of 40, mad that most of America is more fixated on “boobies”, breasts, and “tatas,” than the fact that 40,000 men and women are DYING of breast cancer every year. And they are angry that only 5% of all of the money raised by the “pink” organizations actually go to metastatic disease. I know that this is sadly a marketing issue, but somehow it needs to change.

I also learned some good technical information. I heard a good talk from Dr. Steven Chmura at the University of Chicago, who spoke about “oligometastasis” and breast cancer. This was a term that I had never heard before, but a category that I fit into. Oligometastasis encompasses those patients with limited metastatic disease, specifically it is those that have fewer than 5 metastatic lesions of which are 5 cm or less. The promising news was that the 5 yr survival rate for oligometastatic patients was 59.6% in a U of Chicago study, compared to 11.6% for patients with full-blown metastasic disease. I need to do some research on this, but I found it to be exciting news.

My two major takeaways from the conference were:

1) I am (unfortunately) not alone when it comes to being a young woman with metastatic disease and

2) There is a lot of work being done in the area of breast cancer treatment, which will help provide additional options for those suffering from this disease.

Overall, I left the conference with a lot of hope and some sadness. Sadness for those that I met that are truly fighting their cancer with everything they’ve got and suffering tremendously in the process. Let us all hope that we do find something that can change the outlook for those with metastatic disease before it is too late for these strong, courageous women.