| NCCN Highlights IBC on Webpage!! | |
With the help and contribution of Ginny Mason, Executive Director of ibcRF, the National Comprehensive Cancer Network (NCCN) has posted valuable information on Inflammatory Breast Cancer. Go to www.NCCN.com to read the full story. |
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FOCUS ON CLINICAL TRIALS
Ginny Mason, RN, BSN | |
This month we want to bring to your attention an international clinical trial specifically for inflammatory breast cancer. While there are limited sites in the U.S. still recruiting, the study started in 2007, it is important that adequate numbers accrue to the trial so the value of the new compound, pazopanib, can be evaluated. Clinical trial data is essential if there is to be evidenced based data to guide treatment of inflammatory breast cancer.
Pazopanib Plus Lapatinib Compared to Lapatinib Alone in Subjects with Inflammatory Breast Cancer is a phase III, double blind trial. A phase III trial is designed to study safety and efficacy. "The double blind part of the study is being conducted to compare the efficacy and safety of pazopanib in combination with lapatinib with that of lapatinib alone in subjects with inflammatory breast cancer whose tumorsoverexpress the ErbB2 protein (Her2/neu). There is also an Open-label pazopanib arm to this study designed to test whether pazopanib given alone and lapatinib given alone would be safe and effective to treat patients with inflammatory breast cancer."
Currently there are just two sites in the U.S. recruiting for the trial, and an additional site is pending. To study the inclusion/exclusion criteria and available sites for this trial (NCT00558102) visit: ClinicalTrials.gov.
**The above is informational only and should not be considered a recommendation or endorsement of any specific clinical trial by the Inflammatory Breast Cancer Research Foundation. |
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The Breast Cancer Deadline 2020 | |
Recently the National Breast Cancer Coalition (NBCC) announced their new campaign, "The Breast Cancer Deadline 2020" a major new weapon in the battle to end breast cancer. View this TV ad and share it with others.
The end of breast cancer by January 1, 2020. Do you think this can happen?
Despite years of campaigns to raise awareness, ever expanding screening programs and increased fundraising and research, the number of deaths from breast cancer hasn't changed dramatically. NBCC feels it's time for a new approach and has launched their new campaign at StopBreastCancer.org and their Facebook page.
Perhaps a deadline appears to be an unlikely way to end breast cancer. Whether you agree with the approach or not, I think we all agree that it's time for less talk and more action! We've been doing this "Breast Cancer Awareness" thing each October for years, focusing on the color pink, and stressing early detection. But as NBCC is reminding us, the annual deaths from breast cancer have not decreased significantly. We in the inflammatory breast cancer community are probably more aware of this fact than others. In spite of improved treatments, inflammatory breast cancer remains a deadly and difficult disease to conquer.
Indeed, it's time to bring down those numbers to ZERO. |
| Upcoming Events |
Oct. 28 - Living Well with Metastatic Breast Cancer: Managing Symptoms and Side Effects; Teleconference Click here.
Oct. 28-31 - 12th Annual Lynn Sage Breast Cancer Symposium; Chicago, IL Click here.
Nov. 8 - Teleconference: Bone Health: What You Need to Know; 12 pm to 1:15 pm EST Click here.
Nov. 9 - 15th Annual New York Gala; National Breast Cancer coalition Fund; New York, NY Click here.
Nov. 13 - Conference: News You Can Use: Breast Cancer Updates for Living Well; 9 am - 6 pm; Philadelphia, PA Click here. Dec. 2 - Food and Drug Administration (FDA) Oncology Drugs Advisory Committee; Silver Spring, MD; 8 am to 5 pm Click here. Dec. 8-12 - 33rd Annual San Antonio Breast Cancer Symposium; San Antonio, TX Click here. |
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 Quick Links for IBC Patients and Caregivers
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1-877-STOP-IBC
1-877-786-7422
email:
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An Insider's View
7th Annual IBC Bowling Day
By Ginny Mason, RN, BSN
Executive Director, ibcRF
While I'm not officially a Bigoski, or even a relative of the family, for purposes of this article I'm calling myself an "Insider" because the Bigoskis have warmly welcomed me into their family and allowed me a 'behind the scenes' look at this amazing event.
IBC Bowling Day may look like it just happens, but I know for a fact that work begins early in the year to pull off such a major event. Tom, along with his father Jack, share the bulk of the organizing, made more challenging since Tom moved from the area. This year Tom's new business, Thomas Bigoski Insurance Agency, LLC, was the Title Sponsor. That's a real commitment!! Cousin Jeff, with the help of others, spends most of his free time searching out amazing raffle items and sponsors for the event; while brother Stephen keeps the website (www.ibcbowling.com) and Facebook page updated as well as other things as needed. Other family members and friends are busy behind the scenes in the months and weeks leading up to IBC Bowling Day to make it the amazing event it is.
Just as in previous years, the bowling lanes were filled with teams long before the deadline for registration. There were some new groups this year, but the bulk were the regulars who come each year to have fun while they support the Inflammatory Breast Cancer Research Foundation. Some teams even have their own t-shirts made for the day, but most proudly wear their IBC Bowling t-shirt featuring the Inflammatory Breast Cancer Research Foundation logo on the front and event specific information on the back.
This was my fourth time to participate in IBC Bowling. What a delight to represent the Inflammatory Breast Cancer Research Foundation and have fun at the same time! The Valley Forge location of Homewood Suites, by Hilton, generously provided my home away from home for two nights, and I managed free air transportation thanks to credit card points. Tom and Jeff met me at the airport and after a scenic, traffic filled ride; we were in Eagleville at the Bigoski "home place" where last minute preparations were in full swing.
Of course it was exciting to finally meet the newest members of IBC Bowling, Katherine and William. Their mother, Amy, had her hands full with the little ones and couldn't be on site as much to help her brothers with the event. However, when she did arrive with Katherine and William they stole the show! The noise and the activity of the bowling alley didn't seem to bother them a bit. I even snapped a few pictures of them sound asleep amid all that hubbub! Be sure to check out the photos on the IBC Bowling website to see these two newest IBC Bowling fans.
The Bigoski home was overflowing with beautifully crafted gift baskets, filled to the brim with goodies like wine and gourmet foods; baby supplies; cooking items; and chocolates! There were theme baskets for "movie night", "Christmas", "Fall is Coming", "Guys Night on the Back Porch", "Snack Basket", and more. We loaded up vehicles and took all the raffle items to the bowling alley to save time on Saturday for all the last minute things that would need to be done. Hopefully everyone got some sleep in preparation for the big day.
After fueling up with some coffee and donuts, we were ready to transform Facenda-Whitaker Lanes into IBC BOWLING, Saturday morning. Pink and white balloons were filled with helium and placed strategically along the handrails and at each lane. Raffle tables were covered and items set up, while the familiar "Raffle tickets, $1 each or 6 for $5" banner was hung on the wall above the raffle ticket sales area. Amazing how many people still asked, "How much are the raffle tickets"!?! Finally everything was in place and people started to trickle in. By the official 10:30 am starting time, the bowling alley was buzzing with activity!
In addition to the regular raffle items there were "Special Raffles", with higher priced tickets, featuring Movado watches, tickets to Eagles vs. Jets and Phillies vs. Brewers or Nationals games. A $5 raffle bought you a chance on a two-night stay at the Pan American Hotel in Wildwood Crest, NJ. Along with the great baskets and individual raffle items, there were dozens of gift cards for places like Panera Bread, Macy's, Kohl's, Applebees, and a number of local establishments.
Those who attend IBC Bowling enjoyed snacks provided by Chick-Fil-A at Plymouth Meeting and awesome chocolate cupcakes, handmade by Tom's wife Amanda, complete with white icing and pink sprinkles! I can personally attest to the quality of the snacks and judging by how quickly things disappeared, everyone must have agreed with me!
At the close of the day after all the raffle numbers have been called, the bowling lanes are quiet, and the cupcakes gone, Tom went to the microphone to thank all who came and give me an opportunity to say a few words. It's tough to adequately express our gratitude to this family and their friends for their generosity of time, talents and money. How do you put into words the emotions in your heart as you receive a giant check for $23,310? What I could do is say thank you, then share about the exciting grants that the Inflammatory Breast Cancer Research Foundation was able to fund this year, with help from the Milburn Foundation and events like IBC Bowling. I told them we are making progress, but it's not enough and it's not happening fast enough. Finally, I told them that we couldn't do what we do without their generosity, dedication, and devotion to the Bigoski family and the Inflammatory Breast Cancer Research Foundation. I had to dry my tears as we shared hugs, high-fives, and "see you next year." It is truly an amazing day.
Now...a little history for those who may be learning about this event for the first time. I first "met" the Bigoski family when Julie was diagnosed with IBC in 2003. Husband Jack, a pharmacist, was looking for information, support, and hope when he contacted the Inflammatory Breast Cancer Research Foundation. Over the years we shared many emails and phone conversations and celebrated when Julie finished treatment and things were looking optimistic. We all know how sneaky this disease can be and Julie, a nurse, was vigilant about check-ups; but was blind-sided by a seizure in the summer of 2008. Not one to turn away from a challenge, Julie underwent extensive treatment to try and halt the IBC that was invading her brain and remaining breast. Sadly, on August 3, 2009, Julie passed away, surrounded by her loving family. It is a testimony to this family's love and dedication to Julie that they continue to support the Inflammatory Breast Cancer Research Foundation with IBC Bowling.
Please be sure to visit the website: www.ibcbowling.com and become a fan of IBC Bowling on Facebook.
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Another Step in the Journey of an IBC Survivor
By Carol McWilliams, Volunteer ibcRF
Seven years ago last month, I began treatment for stage IIIB Inflammatory Breast Cancer as an active participant in researching treatments and working with my oncologist in making decisions about treatment options. What did the research show? Every decision we made was based on the research.
The next step was discovering the Inflammatory Breast Cancer Research Foundation, a perfect match for my interests. Ginny Mason helped me realize that there was hope, that there are long term survivors, and that depression at the end of treatment is not unusual.
Fast forward to the most exciting, scary step of all! With the encouragement and support of Ginny and Gayla Little, I applied to attend the National Breast Cancer Coalition's Project Lead Institute which is a five-day intensive science course that covers the basics of cancer biology, genetics, epidemiology, research design, and advocacy.
To prepare, I reviewed all my favorite research based web sites and reread the latest research about inflammatory breast cancer (IBC). Project LEAD sent a huge, heavy packet of materials about the institute and articles to read. I decided to create a Project LEAD Diary, in which nightly I would record my thoughts about each day. In theory, a great idea....
Nothing, absolutely nothing can prepare a person for the fast-paced, high level course materials taught by brilliant faculty. As Dr. Patricia Steeg of the National Cancer Institute warned us, we were about to have a graduate level course in the microbiology of breast cancer--in 5 hours. And we did. And that was only the first day. Hence the diary entry below:
"Extremely busy day, so much information that I think my brain is going to explode. Some of it is new information, or information that I know, but presented in a different manner that expands my understanding of it. Last night I was totally stuck with part of the homework, the topic of RNA translation. Just as in the Bill Murray film, I was "lost in translation." And convinced I would never get it. But the faculty presenting today (Dr. Patricia Steeg) did such a good job, that I finally got it!"
That was my first and last entry in my Project LEAD diary. Did I mention the many hours of homework each night?
At the end of the week, we were a group of exhausted but exhilarated women and men from all over the country, from all age groups, from many different sponsoring organizations. My take home message from the Institute is this: research is the key to all progress with this disease. I am honored to be associated with the Inflammatory Breast Cancer RESEARCH Foundation--committed to finding the cause. |
CANCER DRUG DEVELOPMENT AND APPROVAL
By, Ginny Mason, RN, BSN Executive Director, ibcRF The Food and Drug Administration (FDA) has a huge task as the 'federal watchdog'. Carefully evaluating the safety and efficacy (effectiveness) of medications in a prompt and thorough manner is difficult. The FDA does not evaluate cost. We in the public tend to want new drugs that work and are safe, NOW.....but often serious adverse effects aren't known until the drug is in wider use. Newer is not always better. The FDA is broken up into various divisions with each division focusing on a specific medical area. To help guide the FDA in their decision making process there are a variety of panels made up of medical professionals in the given field, biostatisticians, industry representatives, consumer representatives and patient representatives. The Oncologic Drug Advisory Committee (ODAC) is the panel devoted to cancer drug review. In 2007, I was appointed to serve a four year term as the consumer representative on ODAC. The ODAC consumer representative is typically a medical professional who has ties to the oncology community, but is not typically a patient themselves. It's been an interesting and informative experience as I've learned more about the drug development and approval process. Since the group deals with all types of cancers I've had to review my medical textbooks and do some extra reading in preparation for many of the meetings as well as wade through the copious amounts of material supplied by the FDA and sponsor. Far more preparation time goes into the meeting than is involved in the actual in person meetings. FDA committee meetings are open to the public and all comments and voting are public record. Typically the meetings are held in a hotel in the general Rockville, MD area and announced at least a month in advance. I would encourage you to attend if you are able to learn more about the process. Meeting information is at www.fda.gov A recent issue of The Duke Comprehensive Cancer Center "Notes" carried a good "Ask the Expert" column on ODAC. ODAC panel member Gary Lyman, MD, MPH, FRCP, professor of medicine and director of the Comparative Effectiveness and Outcomes Research at Duke University School of Medicine and the Duke Comprehensive Cancer Center, provides the 'expert' commentary for the column. This piece gives a good overview of ODAC and the drug development and approval process. Dr. Lyman is just one of the excellent practitioners that I've had the opportunity to interact with on ODAC along with a variety of others in the oncology community. To read the full article go to: www.cancer.duke.edu/notes and click on the Fall 2010 issue, "Ask the Expert" is on the last page. |
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