Focus on Inflammatory Breast Cancer Newsletter

Blast from the past--two early IBC articles published in MAMM magazine in 2001 and 2006 have returned to the web site in an improved easy-to-read format.

Just updated are the photos of IBC skin mets. There are 2 new ones at the top of the page, one shows the appearance prior to diagnosis, the second shows after some chemotherapy. At the end of the page are 2 more new photos of extensive skin mets from the same patient as in some of the photos published last month.

Also just updated is the visual clinical symptoms page. There is a 3 photo sequence of the same patient: 1 day after first chemo, 1 week after second chemo, and 1 day after third chemo treatment. Remember there are often non-visual symptoms that include itching, pain, and skin thickening.

Needed are additional photos of pre-diagnosis IBC, especially from women of color. If you have a photo to share on the web site, please contact carol.ibcrf@gmail.com.

Do you Facebook? So do we!

Scientific Peer Review of Breast Cancer Research Applications for the Department of Defense

Breast cancer advocate Carol McWilliams recently participated in the evaluation of research applications submitted to the Breast Cancer Research Program (BCRP) sponsored by the Department of Defense. Carol was nominated for participation in the program by the

Inflammatory Breast Cancer Research Foundation. As a consumer reviewer, she was a full voting member, along with prominent scientists, at meetings to help determine how the $150 million appropriated by Congress for Fiscal Year 2011 (FY11) will be spent on future breast cancer research.

Consumer reviewers are asked to represent the collective view of breast cancer survivors and patients, family members, and persons at risk for the disease when they prepare comments on the impact of the research on issues such as disease prevention, screening, diagnosis, treatment, and quality of life after treatment.

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of breast cancer research applications since 1995. To date, more than 740 consumer reviewers have served on breast cancer panels alongside scientists in the review process. Colonel Jeffrey C. Leggit, M.D., Director of the Congressionally Directed Medical Research Programs, expressed his appreciation for the perspectives of the consumer advocates in the scientific review sessions. "The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient's perspective and provided valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all of the human element involved in medical research."

Thousands of breast cancer research applications will be reviewed for 2011 fiscal year funds. Scientists applying propose to conduct innovative breast cancer research aimed at the elimination of breast cancer. The BCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.

More information about the Department of Defense Breast Cancer Research Program is available at the Website:

http://cdmrp.army.mil.

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DR. BETH OVERMOYER RECEIVES GRANT FROM INFLAMMATORY BREAST CANCER RESEARCH FOUNDATION

by Ginny Mason, Executive Director

Yes, you read the headline correctly, the Inflammatory Breast Cancer Research Foundation has awarded a second grant this year!

Last month we announced a $50,000 grant to Heather Cunliffe, PhD, of Translational Genomics Research Institute, to pursue molecular study of triple negative inflammatory breast cancer. Dr. Cunliffe was recently interviewed on a local Phoenix television station and talked about her research. (check my FB page for the link to the newscast...stats are bad but the rest is good!)

As this year's group of research proposals were reviewed two stood out from the rest and received equally high marks from all the reviewers. When it came time to make the award, the Board faced a tough decision. Finally, after much discussion, the Board decided to dip into reserve funds and award two $50,000 grants! In these challenging economic times it may seem like a bold move but the Inflammatory Breast Cancer Research Foundation is dedicated to facilitating quality research and is willing to take the risk in hopes of high gain.

The second $50,000 grant goes to Dr. Beth Overmoyer of Dana Farber Cancer Institute to pursue her research project, "Validation of Jak2 as Novel Therapeutic Target in Triple Negative Inflammatory Breast Cancer."

Dr. Overmoyer is a medical oncologist focusing on the treatment of breast cancer. She is also an Assistant Professor of Medicine at Harvard Medical School. In addition to these duties, Dr. Overmoyer heads the team of specialists for the Dana-Farber/Brigham and Women's cancer Center's IBC Program. The team is made up of medical, surgical, and radiation oncologists who work together to assure prompt diagnosis and treatment for patients with inflammatory breast cancer. Learn more about the Dana Farber IBC Clinic.

Our congratulations to both Dr. Cunliffe and Dr. Overmoyer for their excellent research proposals. The inflammatory breast cancer community will be excitedly waiting for the results of your research in hopes it will further our understanding of this complicated disease and provide options for improved treatment.

Funding for the 2011 grants was made possible through a collaboration of the Inflammatory Breast Cancer Research Foundation and the Milburn Foundation. A generous gift from the Milburn Foundation enabled the Inflammatory Breast Cancer Research Foundation to expand the grants program this year and give two research awards.

Read more about Dr. Overmoyer in the interview below.

I AM A WOMAN WITH METASTATIC BREAST CANCER
by Susan Niebur

October 17, 2011

I am a woman with metastatic breast cancer. My cancer was first detected as inflammatory breast cancer nearly 4.5 years ago, although I've also had invasive breast cancer, Paget's disease, and recurrences as the cancer spread to lymph nodes under my left arm (2010), to lymph nodes in the center of my chest (New Year's 2011), and then to my bones in March 2011.

Metastatic breast cancer means that cancer cells have spread from my right breast to other sites, made themselves at home, and reproduced so many times that now each cell has become a mass of cells detectable by today's x-rays, CT scans, PET scans, and MRIs. I have those tests frequently now, to determine how well my current treatment is proceeding, whether the cancer is progressing or held at bay, and when we should change treatments to something that might be more effective. Last week's tests and scans showed that there is still cancer in my neck, spine, ribs, and hips. The blood tests had been showing a reduction in the
total load of cancer cells in my body, but as the numbers slowed to a standstill, they agreed with the increasing pain in my hips, left ribs, and neck, one that agrees with the scans; we will have to change treatments.

Just to survive, I spend a day at the hospital every two out of three weeks now, receiving chemotherapy through the port implanted in my chest. To lessen the pain of bone metastasis, caused by swelling of the bone as the cancer cells populate the core and push outward against its thin covering, I am undergoing pallative radiation therapy this month: each workday for three weeks. It is working - Thank God, it is working! - but it takes the whole morning to go for treatment and back, and then I sleep it off for several hours, waking when my children arrive home from school. Yes, I have two little children. It is hard to balance treatment with their care, but I am grateful for the opportunity to try. I am grateful that my body responded to treatment the first time, that my chemotherapy, surgery, and radiation in 2007-8 beat
back the cancer and gave me another chance to live, to be their mom - the baby, after all, is only four-and-a-half.

But, like 30% of other breast cancer survivors, the cancer came back. I blamed myself, but we now know that the recurrence of cancer was not my fault. Researchers now say that if a cancer is going to recur, cancer cells have already escaped the breast for other parts of the body even before the primary cancer is detected by today's best methods of detection, let alone breast self-exams, the most highly recommended method of detection of breast cancers.

I am not alone. Over 150,000 women and some men are living with metastatic breast cancer in the U.S. 45,000 die each year. There is no cure. [In 1980, the median survival after initial diagnosis of metastatic breast cancer (that is, not one that was diagnosed earlier, like mine) was 3 years. Twenty years later, that number has not significantly changed.]....

I believe in research. I believe in it so much that I have put my body on the line, participating in clinical trials before I even understood the rarity of the opportunity. Trials for metastatic disease are few and far between - for the FDA mandates that before any clinical trial on metastatic disease start, the drug be shown effective in reducing primary breast cancers first. But many researchers are now saying that
metastatic disease does not behave the same as primary disease, so what good does this regulation do for those of us whose cancer has already come back, despite the drugs we used for our primary disease?

The regulation protects us, yes. But it also makes the testing of new drugs that might work on metastatic breast cancer much rarer than it might otherwise be....

With everything from groceries to debit cards going pink this month, special coverage on the news and advertisements on the radio, there is money and energy flowing in for awareness, treatment, and research on primary breast cancer. But the funding for metastatic breast cancer remains at 3% of all funding for breast cancer research in the United States.

Metastatic breast cancer is a variation of the breast cancer we hear about every day; it is a progression of that disease, and a deadly one. It is what I feared; it is what so many of us cancer survivors diagnosed with Stage I, II, or III breast cancer fear. While women with Stage I, II, or III breast cancer look for the "cure" and celebrate "hope," those of us who have had a recurrence or are diagnosed first at Stage IV are not quite so happy and shiny this month of October. Our "hope" is more desperate, and there is no chance today that we our cancer will ever be "cured...."

We support early detection, breast self-exams, mammograms, and we smile when someone shows us their pink ribbons or tries on pin one on us. But still, we may come away from events like this with a tear in our eye, or mad as hell. If there are so many reasons to "hope," we ask, then can we please be included? If all these walks and collections and special pink hair dryers and vacuum cleaners are being sold "for the cure," is some of it, at least some of it, going to research metastatic disease?

Why is research on metastatic disease funded at a level of just 3% of all breast cancer research, when metastatic disease is the state that all breast cancer patients reach if their cancer recurs? Here's a dirty little secret: very few people die of breast cancer confined to the breast. Breast cancer deaths are caused by treatment or metastasis, after the initial cancer has spread away from the breast and into vital organs. We need to research that end of the cancer spectrum too.

Yes, let's prevent cancer. By all means, let's prevent one more woman from suffering with this disease.

But let's also research metastatic cancer, more, and faster, and let's prevent women from dying from this disease.

Over 30% of women diagnosed with Stage I, II, and III breast cancers will suffer a recurrence and become metastatic. Many more are diagnosed at Stage IV, after the initial cancer has already spread. There is no cure. And yet only 3% of the funding is focused on this end state.

How is this right?

[Editor's note: Susan's article is taken from her blog, Toddler Planet, and has been gently edited for length. Emphasis added.

A CONVERSATION WITH DR. BETH OVERMOYER,
2011 GRANT RECIPIENT
by Ginny Mason

When you read an article about inflammatory breast cancer research do you wonder about the scientist doing the research? Are you curious about their background and how they became interested in studying inflammatory breast cancer?

I've been fortunate, during these past 12 years, to meet many fascinating, dedicated researchers and have been able to ask those questions and learn what drives them to keep working so hard on such a difficult disease.

As you read in another article in this newsletter, the Inflammatory Breast Cancer Research Foundation opted to give TWO research grants this year, totaling $100,000! The second recipient, Dr. Beth Overmoyer is relatively new to the Inflammatory Breast Cancer Research Foundation so I thought it would be good to get to know her a bit better. The following are excerpts from my interview with Dr. Overmoyer.

Can you give me a little of your background and training?

(Dr. Overmoyer) I was born in Pittsburgh, PA and went to college and medical school at Case Western Reserve University in Cleveland, OH. I completed my training in Internal Medicine and fellowship in Hematology/Oncology at the Hospital of the University of Pennsylvania. I then returned to Cleveland to run the Breast Cancer Program at the Cleveland Clinic for a brief time, but spent the majority of my time in Cleveland at the University Hospitals which is affiliated with the Medical School, being the Director of Breast Cancer Research. I then joined US Oncology for a brief time before joining the Breast Oncology Center at the Dana Farber Cancer Institute. I have been the director of the Inflammatory Breast Cancer Program here since October 2009.

Can you tell us what influenced your decision to become an oncologist?

(Dr. Overmoyer) I have always been interested in Hematology since undergraduate school, and wrote my thesis on iron storage in humans. There was no question that I would go into Hematology/Oncology as a specialty. During my fellowship, I was the primary fellow for the director of the Cancer Center at PENN who specialized in breast cancer. Breast cancer was an immediate fit for me, and I went on to complete a fourth year of fellowship specifically focusing on breast cancer treatment. As an oncologist, every day you do something good for someone - from helping them deal with their disease and dying, to treating their curable cancer and allowing them to continue on with life.

Do you treat only breast cancer?

(Dr. Overmoyer) I do now, but haven't in the past. Being a board certified hematologist/oncologist, I have treated acute leukemia, performed bone marrow transplants, and treated all solid tumors from lung cancer to colon cancer. My focus has always been breast cancer, however, so my outpatient practice has always been devoted to breast cancer. At DFCI I also participate in the Genetic Risk and Prevention Center, seeing patients at high risk for developing breast cancer and offering them screening and prevention strategies.

Can you share about the development of the IBC Clinic at Dana Farber?

(Dr. Overmoyer) The focus of the IBC program is to provide patients with the optimal treatment of their disease and to incorporate both a clinical and basic science research program to advance the understanding and treatment of IBC in general. The governing team includes a breast surgeon, radiation oncologist, pathologist, radiologist and basic scientist who meet monthly to discuss the progress of the program and the development of the research focus. Patients who contact us are seen by all three treating disciplines (medical oncology, radiation oncology and surgery) within 72 hours, and we will coordinate the appropriate studies if not performed elsewhere. Patients undergo (if they agree) to a baseline breast biopsy for tissue banking, and they participate (if they agree) in a registry. We are focusing on several preoperative treatment studies (including one for HER2 positive disease, and one for triple negative disease), and a molecular imaging program that will specifically benefit our IBC population. We have an active patient advocacy group who will become more involved in understanding the impact that IBC has on a woman's life; not just health. We have strong philanthropic support specifically for IBC, and of course, the IBC Research Foundation grant.

What are your hopes for the grant funded research project?

(Dr. Overmoyer) We are geared to correlate the association of upregulated pSTAT3 activity and IBC in the laboratory and translate this understanding into the clinic by using JAK2 inhibition as a means of downregulating pSTAT3. This appears to be a very active method for cancer survival among triple negative breast cancers, and IBC in general, therefore our clinical trial will provide proof of concept that JAK2 inhibition is effective in this virulent disease, and should be part of standard treatment.

What kind of involvement do you have with the advocacy community?

(Dr. Overmoyer) As stated previously, DFCI breast oncology center has a very active advocacy program and we are becoming more involved with the local IBC support group to improve education and understand the impact of the disease with the goal of developing interventions that will benefit patients with IBC.

Our thanks to Dr. Overmoyer for shedding some light on her training and how she developed an interest in inflammatory breast cancer. We'll share updates on Dr. Overmoyer's research as data is available for release, so don't miss an issue of Focus on IBC!!