No Lump Required: how to participate in IBC research!

Did you know the first journal article on inflammatory breast cancer appeared in 1814? In 1924, Lee & Tannenbaum described the disease. If you read excerpts from that article you may be surprised to realize how little we've learned since then. That's why we created "No Lump Required" a patient driven research project using CENA (Community Engaged Network for All), a specialized platform for disease specific research. From the comfort of your home, on your computer (right now ithe survey is not mobile friendly) you can answer survey questions that will help researchers better understand the PATIENT experience of this disease. All it takes is a little time, recalling info about your IBC experience, and completing some generalized health questions.

We want PATIENTS driving the research, not the other way around. It's YOUR experience that researchers need to hear, not what a doctor wrote in your chart! Without your data, research can't move forward...that means we need YOU to participate! We're excited to bring this new research model to IBC.

Coming Soon: the 5th International Inflammatory Breast Cancer Conference

Ever wish you could attend a conference that focuses on inflammatory breast cancer (IBC)? There are lots of breast cancer conferences but the International Inflammatory Breast Cancer Conference comes along only every other year. Even then, the location alternates between the U.S. and an international location. This year, you have the chance to spend two days hearing about IBC from leaders in the field and connecting with other advocates. 

On July 9 & 10, the 5th International Inflammatory Breast Cancer Conference will be held at the Boston Long Wharf Marriott Hotel. "The primary goal of the 5th International Inflammatory Breast Cancer Conference is to bring together scientists and clinicians who are interested in understanding this unique disease, and to foster collaboration. This two-day symposium will offer exciting discussions on recent innovations in the multidisciplinary treatment of inflammatory breast cancer and explore scientific advances in breast cancer that can be applied to the understanding of this disease...."

[Editor's note: register before May 1 to get the discounted rate.]
Young Survival Coalition Summit Reflections 
by Jennifer Starr-Reivitt

I remember seeing postings about the YSC Summit in my early years out of inflammatory breast cancer but we were so financially strapped as a young couple with three kids and a boat load of medical bills I always thought "not for me." It took me six years to get to my first YSC, which was six years too long in my opinion. I finally decided to apply for the grants, which was a total breeze, and I was off to Orlando in 2014. We now live in South Carolina, so when I saw that the Summit would be only a few hours away in Atlanta I knew I needed to go again.

C.S. Lewis said this in a book penned about friendship and love--"Friendship is born at that moment when one person says to another: 'What! You too? I thought I was the only one.'"

Although I knew I wasn't alone and had many friends in groups online that I could commiserate with and who understood the struggles of breast cancer and the shock of diagnosis, it wasn't till I attended YSC that I had this overwhelming peace that I was among friends who not only understood but had been there and done that too.

[Editor's note: photo L to R: Anya Silver, Kate Strosser, Katherine O'Brien, RK VanOrsdal, Ginny Mason, Stephanie Landis, Amanda Roethlisberger, Jennifer Starr-Reivitt.]
New Drug Approved to Fight Chemo-induced Nausea  
by Phyllis Johnson

[Editor's note] Board of Directors member, Phyllis Johnson, writes regularly for HealthCentral.com. Below is an excerpt from her November 19, 2015 article.

"Perhaps the most dreaded chemotherapy side effect-right up there with hair loss-is nausea and vomiting. It's the first question many people ask before an infusion. Will this make me sick? The answer used to be "probably." Now the answer is more likely to be "probably not if you take your anti-nausea medicine."

With the FDA approval of a new anti-nausea drug, your oncologist has another tool in an ever expanding array of medicines that fight nausea. The new drug called rolapitant (Varubi) is a pill shown in clinical trials to be more effective than placebo for delayed nausea-the kind that comes on a few days after chemo....

As a patient, you can't keep up with every new anti-nausea drug on the market. What you need to know is that if the first drug your doctor tries doesn't work for you, you should ask for another. Sometimes people just assume that nausea is inevitable if they are on chemo so they don't want to complain to the doctor."
thankyou_basket_hdr.jpg
In Memory of Helen Levine Lipkin 
[December 2, 2014]

Thank you to Helen's family and friends who honored her memory with the second annual Helen's Hope fundraiser. Your hard work and donations will help fund a new IBC research grant. 
BOGO (buy one get one free)!


Spring is here (hopefully) and that means cancer walks, health fairs, etc. You want to educate people about IBC but feel uncomfortable trying to explain inflammatory breast cancer to the masses. Let a brochure or bookmark do the talking for you! Our updated brochure contains simple graphics that illustrate the five most common symptoms of IBC. We all know that pictures often speak louder than words!

How about IBC symptoms bookmarks to share with your book club? Great way to share potentially life saving information with practical use! Working out? Hairdresser or mani/pedi? Ask if you could put some brochures or bookmarks on the counter. You don't have to be an extrovert or comfortable with public speaking to spread the word and educate about IBC....think about all those ripples that come from a little pebble thrown into a pond.

And here's a special offer for April--order brochures and we will match that number with free bookmarks. Example: order 50 brochures, get 50 free bookmarks! There is a nominal cost of 20 cents each for brochures to cover printing and mailing costs. Please allow 10-14 days for receipt of your order. 

Order brochures here.
Recently Published IBC Research

two cancer researchers
A new page for IBC Research published in 2016 has been created. Use the red button at the end of this article to jump to that page to read article abstracts. If free full text is available, it will be linked on the page. At this time, three articles are cited, one with link to free full text of the article.

Just added to the IBC Research 2015 page in addition to many previous article citations:

Yaghoobi, R., et al. (2015). Inflammatory Breast Carcinoma Presenting with Two Different Patterns of Cutaneous Metastases: Carcinoma Telangiectaticum and Carcinoma Erysipeloides. The Journal of Clinical and Aesthetic Dermatology, 8(8), 47-51. Free full text is available at link in title.

Of the 25 articles cited on the IBC Research 2015 page, 10 have links to free full text of the articles.

[Editor's note: all studies have limitations and results should be considered tentative until validated by other institutions.]
IBC History You Might Not Know 

Did you know that when our Executive Director, Ginny Mason, was diagnosed only three drugs were FDA approved for the treatment of breast cancer? At that time giving chemotherapy before surgery was a relatively new idea. There was almost no information about inflammatory breast cancer (IBC) and what little there was, listed 3% of patients were alive at five years after diagnosis. You might wonder why someone would decide to start aggressive treatment with those kind of odds. But Ginny decided someone had to be in that 3% and she figured it might be her, so 'Bring it on'!!

That was March 18, 1994 and fortunately things have changed. There are quite a few chemotherapies available now, more targeted treatments, and survival has improved significantly. Recently Ginny was interviewed by Caitlyn Fitzpatrick of CureToday.com for an article on her personal IBC story and to share a bit about how the Inflammatory Breast Cancer Research Foundation was created. It's a challenge to condense 22 years of living with IBC into a few paragraphs, along with 17 years of the organization's history, so lots of details had to be skipped. Consider this the 30,000 ft. view!"
Upcoming Events

April 8-10, 2016
Thriving Together: 2016 Conference on Metastatic Breast Cancer
Sheraton Philadelphia Society Hill Hotel, 1 Dock Street, Philadelphia, PA;

April 15-17, 2016
Young Survival Coalition Tour de Pink; Disney World to Palm Beach, FL.

April 16, 2016
Sisters Network 7th Annual 5K Walk/Run; Discovery Green Conservatory, 1500 McKinney, Houston, TX.

April 16-20, 2016
AACR (American Association for Cancer Research) Annual Meeting; Ernest N. Morial Convention Center, New Orleans, LA.


June 3-17, 2016

July 9-10, 2016
5th International Inflammatory Breast Cancer Symposium; Marriott Long Wharf Hotel, Boston, MA.
Inflammatory Breast Cancer Research Foundation 
| 877-STOP-IBC or 877-786-7422 |  http://ibcresearch.org
STAY CONNECTED: