Focus on IBC

December 2012    


The newsletter from the Inflammatory Breast Cancer Research Foundation  

Upcoming Events 

December 1 - 2, 2012
3rd International Inflammatory Breast Cancer Conference; Sofitel Philadelphia, Philadelphia, PA;
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December 6 - 10, 2012
San Antonio Breast Cancer Symposium; Henry B. Gonzalez Convention Center, San Antonio, TX;
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December 12, 2012
Teleconference; Fertility and Pregnancy: Pre- and post-treatment Options; 12:00 pm - 1:00 pm ET;
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January 9, 2013
Teleconference; News from the San Antonio Breast Cancer Symposium; 12:00 pm - 1:00 pm ET;
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February 22-24, 2013
Conference for Young Women Affected by Breast Cancer; Seattle, WA; Hyatt Regency Bellevue
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April 6-10, 2013
American Association for Cancer Research (AACR) Annual Meeting; Washington, DC
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April 13-14, 2013
Annual Conference for Women Living with Metastatic Breast Cancer; Philadelphia, PA;
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New 2012 IBC Research Web Page! 

Take a look at a new page for 2012 IBC research, with 8 articles to date. If free full text of an article is provided, it is linked on our page. If the abstract only is provided, there is a link to the record in the PubMed database because some articles eventually provide free full text.


Bertucci, F. (2012). 8q24 cancer risk allele associated with major metastatic risk in inflammatory breast cancer. PLoS One, 7(5).

Pierga, J. Y., et al. (2012). Neoadjuvant bevacizumab, trastuzumab, and chemotherapy for primary inflammatory HER2-positive breast cancer (BEVERLY-2): an open-label, single-arm phase 2 study. The Lancet Oncology, 13(4), 375-84.

Hillyer, R. L., et al. (2012). Differential effects of vitamin D treatment on inflammatory and non-inflammatory breast cancer cell lines. Clinical & Experimental Metastasis. [Epub ahead of print].

Dawood, S., et al. (2012). Identifying factors that impact survival among women with inflammatory breast cancer. Annals of Oncology: the Official Journal of the European Society for Medical Oncology, 23(4), 870-5.

Kim, M. M., et al. (2012). Bolus electron conformal therapy for the treatment of recurrent inflammatory breast cancer: a case report. Medical Dosimetry: Official Journal of the American Dosimetrists , 37(2), 208-13.

Yamauchi, H., et al. (2012). Inflammatory breast cancer: what we know and what we need to learn. The Oncologist, 17(7), 891-9.

Schlichting, J. A., et al. (2012). Inflammatory and non-inflammatory breast cancer survival by socioeconomic position in the surveillance, epidemiology, and end results database, 1990-2008. Breast Cancer Research and Treatment, 134(3), 1257-68.

VanderWalde, A., et al. (2012). Long-term survival after high-dose chemotherapy followed by peripheral stem cell rescue for high-risk, locally advanced / inflammatory, and metastatic breast cancer. Biology of Blood and Marrow Transplation: Journal of the American Society for Blood and Marrow Transplantation, 18(8), 1273-80.
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by Ginny Mason, RN, BSN, Executive Director

photo of Ginny Mason Whether you are newly diagnosed or dealing with metastatic inflammatory breast cancer, you might want to consider a clinical trial.  Unfortunately there are not as many clinical trials available for inflammatory breast cancer as for standard breast cancer.  To add to the challenge, the inclusion/exclusion criteria are often so strict and narrow that patients are often not eligible due to previous treatment or other details.

One place to find clinical trials is through the National Cancer Institute's (NCI) website You'll find an RSS feed of updated breast cancer trials on the Inflammatory Breast Cancer Research Foundation website from this source.  While some find the NCI website cumbersome to use it contains a wealth of information.  Once on the site you just type in "inflammatory breast cancer" then click 'search' and a listing of trials will come up that include inflammatory breast cancer (IBC).  The trials may not be specific to IBC only but allow IBC patients to enroll.  You need to click on the individual trial to read the specifics and find out if it is of interest.  Contact information for the study coordinator is usually listed as well, should you want to contact them personally rather than just pass the information on to your physician.

One example of a trial currently listed is   This is a clinical trial for Triple-negative breast cancer patients that allows IBC patients to enroll but isn't exclusive to IBC.  However, this trial for a MUC1 Vaccine is only for patients who have completed standard therapy for triple-negative inflammatory breast cancer and not open to those with metastatic disease.  Vaccine trials are somewhat different than those evaluating a new therapy.

Another website that has been developed specifically to aid breast cancer patients in finding appropriate clinical trials is  This is more of a 'full-service' website that not only has trial listings, they offer a trials matching program that allows patients to put in specifics about their disease and location then use that information to help locate trials that might be of interest.  This website is a non-profit service designed to encourage those facing breast cancer to consider clinical trials for optimal care.  Trials listed on are also listed here, along with industry or hospital sponsored trials that might not be found on

At the October 13 Metastatic Breast Cancer Network Conference, Elly Cohen, PhD, Program Director for, spoke to the group about the capabilities of the website and how the team continues to fine tune and update the site to meet the needs of the breast cancer community.  She walked conference participants through using the site for various subtypes of metastatic breast cancer (even inflammatory breast cancer) to show how the site is user-friendly and contains volumes of information.  The trial matching program is especially useful and can help patients find trials in their geographic area.  Should you want to explore "all trials" you can do that, then narrow down the search by subtype.  If you search for "inflammatory breast cancer" and click on "metastatic disease" you'll be asked to narrow down your search to hormone status and metastatic disease sites.  This allows the software to try and find the trials most appropriate for you.

When exploring clinical trials remember that phase I trials are usually fairly small, testing the safety of the investigational compound, dose and identifying side effects.  Phase II take place after safety and dose or dose range has been determined in the phase I trial.  Larger numbers of patients are enrolled and additional safety signals and side effects are evaluated along with effectiveness.  When a compound moves to phase III, the compound is usually compared to standard of care treatment to determine if the new compound is more effective than the standard of care, while continuing to monitor for side effects.  These trials are often quite large and take a lot of time and energy to complete.  Regulatory approval is usually based on the outcome of phase III trials.

It's important to remember that clinical trials are vitally important if we are to learn what treatments are the most effective with the least amount of side effects.  Those who participate in clinical trials are closely monitored and the care is often less costly and higher quality than for standard treatment.  Trial participants should not see themselves as guinea pigs but as playing an important role in helping to understand their disease and developing improved treatment. 

Metastatic Breast Cancer Conference

Videos of all the speaker presentations at the recent MBC Conference in Chicago are now available online. 


Inflammatory Breast Cancer Research Foundation Medical Advisory Board Member, Dr. Pat Steeg presented A Common Sense Approach to Metastases Research to Achieve Results.   


Complete list of videos:

Understanding MBC: How it is Followed in the Clinic and When to Use Standard Care or Clinical Trials
Hormone Positive Metastatic Breast Cancer
HER 2 Positive Metastatic Breast Cancer
Triple Negative Metastatic Breast Cancer
Brain Metastases
Tribute to Ellen Moskowitz and Suzanne Hebert
Bone Metastases
Improving Daily Functioning
Living with MBC for those under age 40
How do I Find a Clinical Trial?
Interventional Procedures for Single Mets
Treating Pain and Neuropathy
Role of the Caregiver
Living with MBC for those over age 40
Emerging Research  

Remember ibcRF In Your End of Year Giving
by Ginny Mason

Are you like me and wait until the end of the year to do your annual non-profit giving?  My intentions are good and each year I think I'll get to it sooner but it doesn't happen.  Just the other day my husband and I finally took the time to discuss our church pledge for the coming year and that reminded us to get our check in the mail to ibcRF, before it slipped our minds again!

Perhaps you want to wait until your holiday spending is completed, have a chance to plan for winter utility needs, or just haven't even given charitable donations a thought in the busyness of day to day living.  No doubt you've been asked by many groups for support with food banks and other charitable organizations feeling the pinch, especially during the holidays.

We know economic times are tough and that includes the non-profit sector as well. The Inflammatory Breast Cancer Research Foundation receives no pharmaceutical or other corporate funding and relies solely on individual donations. We work hard to keep administrative costs to a minimum in an effort to direct more than 90% of available funds to the organization's mission and goals.  No fancy office or high paid staff for this focused, grass-roots organization!

If you believe in the research funded and supported by the Inflammatory Breast Cancer Research Foundation, the information and support we provide, show your support with a tax-deductible donation.  Donations can be made via check or through our website.

Without generous people like you the Inflammatory Breast Cancer Research Foundation could not continue work designed to change the future of for those facing IBC. Thank you from all of us on the Inflammatory Breast Cancer Research Foundation Board of Directors.

To make a donation use: the ibcRF Cause on Facebook or the Make a Donation page on the web site.

Medical Advisory Board Member Headed to Stanford

photo of Dr. Sledge Inflammatory Breast Cancer Research Foundation Medical Advisory Board member, Dr. George W. Sledge, Jr, will be the new chief of oncology in Stanford's Department of Medicine.  He begins this position mid-January 2013.

Dr. Sledge served as President of the American Society of Clinical Oncology 2010-2011 and is known internationally as a leader in the field of breast cancer.  He was recruited from the Indiana University Simon Cancer Center where he serves as professor of medicine and the Ballve'-Lantero Professor of Oncology.  Dr. Sledge juggles his time between bench and bedside providing clinical care while working on innovative treatments for breast cancer.

The following can be found in a recent post on the Stanford School of Medicine website.  "Stanford has been a leader in finding cures for lymphomas and Hodgkin's disease and in providing new insights and innovations in cancer treatment, thanks to the leadership of Dr. Ron Levy," said medical school Dean Philip Pizzo, MD. "I am enormously pleased that Dr. George Sledge will be Stanford's next chief of medical oncology. Dr. Sledge is an internationally acclaimed leader in cancer research and treatment, and brings an incredibly impressive record of knowledge, vision and opportunity to the Stanford Cancer Institute. His appointment helps assure that Stanford Medicine and the Stanford Cancer Institute will improve the lives of individuals with cancer in our community, locally and globally."

"Stanford's opportunity to create the future of cancer medicine is unparalleled," said Sledge. "I can't think of any place more suited to bring new understanding about the biology and genomics of cancer together to help patients in the clinic. It's very exciting."

See members of the ibcRF's medical advisory board.

To read more about Dr. Sledge and Stanford: