Focus on IBC

October 2012    


The newsletter from the Inflammatory Breast Cancer Research Foundation 

Upcoming Events 


October 5, 2012

Cancer Rights Conference, Central Valley, CA;

More Information 


October 8, 2012

Living with Metastatic Breast Cancer, Part 1: Medical Update; Teleconference; Noon - 1 pm EDT;

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October 10-12, 2012

Third International Symposium on Breast Cancer Prevention: Models for Breast Cancer Prevention From Innovation to Action; Purdue University; West Lafayette, IN;

More Information   


October 11, 2012

Progress in the Treatment of Metastatic Breast Cancer, Part 1: Living with Metastatic Breast Cancer; Teleconference; 1:30 - 2:30 EDT;

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October 13, 2012

Metastatic Breast Cancer Network 6th Annual Conference: Moving Forward with Metastatic Breast Cancer; Northwestern University, Chicago, IL; 

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October 22, 2012

Living with Metastatic Breast Cancer, Part 2: Emotional Impact; Teleconference; Noon - 1 pm EDT;

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October  26-27, 2012

8th Annual Supportive Oncology Conference; Intercontinental Hotel, Chicago;

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October 29, 2012

Collaborate/Activate Finalist Event; Washington DC metropolitan area (see website in article for more information as it becomes available) 


November 30 - December 1, 2012

ASCO Quality Care Symposium; Manchester Grand Hyatt, San Diego, CA; advocate discounted registration rate by 10/24; 

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December 1 - 2, 2012  

3rd International Inflammatory Breast Cancer Conference; Sofitel Philadelphia, Philadelphia, PA;

More Information 


December 6 - 10, 2012

San Antonio Breast Cancer Symposium; Henry B. Gonzalez Convention Center, San Antonio, TX;   

More Information  

Updated Web Pages

IBC Symptoms
IBC Diagnosis
IBC Treatment
IBC Fascinating Factoid

Have you checked out the updated website lately?  If so, did you recognize the image on the right side of the new header for the ibcRF web site? Look closely and notice the two lymphatic channels of the breast skin that are clogged with cancer cells. The lymphatic channels have a white border in this photograph, and the cancer cells are darker in color.  This is what IBC can look like under a microscope!

In 1909, Archibald Leitch first described this pathology of IBC, the invasion of the lymphatic channels in the skin of the breast with cancer, providing an explanation for the orange peel appearance of the skin.

Want to read more about IBC in the early 20th century?
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Clinical Trial Spotlight


Unfortunately there are few clinical trials designed to meet the needs of the inflammatory breast cancer community. As trials are listed it is important to share the information so those with interest are aware of the trials.  The Inflammatory Breast Cancer Research Foundation's web site has an RSS feed from showing available breast cancer trials but it takes a bit more 'digging' to locate those trials that include inflammatory breast cancer.


nurse hanging chemotherapy drugs

Recently a trial sponsored by the TBCRC (Translational Breast Cancer Research Consortium) opened at the Dana Farber Cancer Institute for patients with inflammatory breast cancer or patients with local-regional recurrence after mastectomy.  This is a Phase I study, meaning that it is designed to determine the maximum dose and safety of the trial medication when combined with radiation. Phase I trials are not designed for efficacy but often activity signals are observed that help guide the remainder of the process. 


DFCI 12-142 or Veliparib with Radiation for Inflammatory or Locoregionally Recurrent Breast Cancer combines Veliparib, a PARP inhibitor, with radiation therapy.  PARP family enzymes play an important role in DNA damage response. The design of this trial hopes to maximize the synergy of the PARP inhibitor when combined with radiotherapy.


Read the specific details of this trial and contact information.

Note: This information is intended as education only and does not imply endorsement of any particular treatment by ibcRF. [Image of nurse hanging chemotherapy drugs courtesy NCI Visuals Online, Bill Branson, photographer.]

2012 Partners in Patient Health Innovation Challenge
by Ginny Mason RN, BSN, Executive Director 

The Inflammatory Breast Cancer Research Foundation is excited to share that we have been named in one of the four FINALIST group projects in this Sanofi competition.  Sanofi US "believes that better approaches and solutions to engaging people in their health can be created by encouraging collaboration among patient advocates."  This year's Collaborate/Activate Innovation Challenge information was sent out to the healthcare advocacy community and groups started thinking about the project they might put together.

Teams, consisting of at least two non-profit patient and/or medical professional advocacy groups, were invited to submit an innovation concept that would engage people with their health.  Judges then reviewed the submitted proposals and narrowed down the field to four finalist teams "whose concepts illustrate a patient-centered intervention that could only be possible through their teams' collaboration."

image of dna Having been chosen as one of the four finalist teams, we're working with our Sanofi assigned mentor to fine-tune our concepts and build our implementation plan in preparation for the finalist event.  Our project titled "Registries for All Diseases", builds on the biorepository constructed by a collaboration of disease advocacy groups.  We propose to build a registry using patient-generated information around rare diseases to accelerate development of clinical trials.  As you know, the Inflammatory Breast Cancer Research Foundation is a founding member of the Genetic Alliance BioBank and since 2005 has been enrolling participants into the Inflammatory Breast Cancer Research Foundation BioBank and Clinical Data Base.

Joining the Inflammatory Breast Cancer Research Foundation on the Collaborate/Activate team are Genetic Alliance, CFIDS Association of America, and the National Psoriasis Foundation.  These groups have been working together through the BioBanking project for a number of years so it makes sense to expand that collaboration with this new project.

Each finalist team will receive $25,000 which is to be used to further develop their plan.  October 29, the four finalist teams will present their refined concepts and implementation plans to the judges during the Finalist Event in the Washington, DC metropolitan area.  Videos of the Finalist Event will be streamed on the Collaborate/Activate website.  On November 15, the judges will announce one winning team and one runner-up.  The winning team will receive $300,000 with the runner-up receiving $100,000.  As an added benefit these winners will also have access to Sanofi US resources to further develop their plans.

Other finalist projects include development of an asymptomatic Alzheimer's test; real-time flu surveillance; connect chronic pain patients to clinical trials.  Information on each project is available on the Sanofi website.

Learn more about the Collaborate/Activate Challenge. There you can read about the process, bios of the judges, and even blog entries from the various teams. This is an great opportunity for the Inflammatory Breast Cancer Research Foundation to educate about inflammatory breast cancer in the broader healthcare community while raising awareness of our organization and it's work.


[Image of DNA courtesy NCI Visuals Online, Dr. Richard Feldmann, photographer.]  

"Pinktober"...Thoughts from the Executive Director
Well, here we are again.  It's October and suddenly we're awash in a sea of pink marketing.  Open any women's magazine and you'll find articles like "How I Beat Breast Cancer", "10 Breast Cancer Warning Signs", "Protect Yourself From Breast Cancer", and so on. Thanks to 'pink-washing' many people no longer believe breast cancer is a significant health issue. Somehow they've missed the statistics showing nearly 40,000 women will die this year from breast cancer.  In my view that IS a significant health issue!  Perhaps of even more concern is how that number has remained fairly constant over the past 10 years, in spite of diagnostic and treatment advances.

Prior to my diagnosis of inflammatory breast cancer in 1994, I wasn't aware of the pink marketing.  My first post-diagnosis October heightened my awareness of all the pink merchandise in the stores.  I received gifts of pink pens, coffee mugs, writing paper, and a host of other things.  Many of those well-meaning people bought the item because they believed they were supporting breast cancer research with their purchase.  You've seen the message on products, "a percentage of the proceeds from the sale of this product will be donated to breast cancer research". Unfortunately they don't tell you how much will be donated and even more important, who will receive the donation!

In 2002 Breast Cancer Action, a California based breast cancer advocacy organization, launched a campaign called "Think Before You Pink"They wanted to expose pink-washing for what it is, a brilliant marketing strategy. A company markets something as supporting breast cancer awareness or research, hopefully makes a donation to some breast cancer group and THEY get a big tax write-off.  It can be challenging to find out how much is being donated and who is receiving the donation, not to mention how it will be used. 

My own mother was caught up in the pink marketing, buying things she didn't need (or even want) thinking she was supporting breast cancer research.  I encouraged her to research before buying an item to know just how much of the purchase price was being donated and who would receive the donation.  I even went so far as to suggest that if she wanted a pink mixer she should just paint her white mixer with pink spray paint and make a donation to the breast cancer organization of her choice (ibcRF of course) and claim the tax deduction herself!

Pink marketing tugs at our heart-strings.  Breast cancer has touched virtually everyone in some way and we want to help....we want to make a difference.  This "Pinktober" I would encourage you to follow Breast Cancer Action's slogan, "Think Before You Pink". If you want to support breast cancer research, make your donation to an organization you trust to use your money wisely and honestly and get the tax credit for yourself.

No doubt we'll continue to be surrounded by pink in October but hopefully we'll learn to be educated consumers and demand that those who use breast cancer as a marketing tool be accountable while we bypass that pink bucket of fried chicken!!