| June 2011 | |
Focus on IBC
IBC RESEARCH FOUNDATION NEWSLETTER |
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PAMPERED CHEF PURCHASES TO BENEFIT IBC RESEARCH FOUNDATION
By, Ginny Mason, RN, BSN
Executive Director, ibcRF When Rhonda learned that her good friend Dawne had been diagnosed with inflammatory breast cancer she was devastated. Her training as a nurse helped her understand the information she located on-line as she searched to learn more about this unusual form of breast cancer, but she didn't like what she read. In spite of the grim details, Rhonda wanted to believe that her friend would get through the treatment and become a long-term survivor; and she would be by her side through it all. In her role as friend and advocate, Rhonda has been with Dawne through chemotherapy treatments and tries to do whatever she can to make the journey a little easier. In the midst of providing support and encouragement to Dawne, Rhonda thought about how she might do something that would benefit Dawne as well as others facing this diagnosis. What could she do? Rhonda's nursing career is on hold right now to be more available for her family, but she has become an independent consultant for The Pampered Chef. She knew that The Pampered Chef supports breast cancer efforts in May and October (Help Whip Cancer) but what about a fundraiser for inflammatory breast cancer! After talking over the idea with Dawne, things started to take shape. Dawne wanted the fundraiser to support research of inflammatory breast cancer. Her medical background (Dawne is also a nurse) told her that without research things would not improve for those diagnosed with inflammatory breast cancer. That's when Rhonda contacted the Inflammatory Breast Cancer Research Foundation to explore having a fundraiser to raise money for research. There were lots of questions and details to work out, but by the end of the phone call, a plan was in place. Rhonda and Dawne live in Texas, but wanted this event to reach more people than just those in their area; so it will include an on-line option to include anyone in the U.S. who can access her website to place an order. Want to be a part of this fundraiser and help Dawne support inflammatory breast cancer research? Here's how it works: Rhonda says, "go to my website: www.pamperedchef.biz/rhondamangum.....click on 'shop online' and type in the host as Inflammatory Breast Cancer Research Foundation. Then START SHOPPING!" SPECIAL NOTE: As guests of this party you'll be able to get a free 2 quart collapsible bowl + lid,, with a purchase of $60 worth of products. (The bowl is valued at $15.50) The fundraiser will run JULY 1 - JULY 15, 2011. So plan ahead and think about those birthday, shower, and wedding gifts you need this summer (and of course a little something for yourself!) Explore the on-line catalog and make your list, then follow Rhonda's instructions. You'll be supporting inflammatory breast cancer research while purchasing quality products from our new friend Rhonda (& The Pampered Chef.) |
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CANCER ADVOCATES AT ASCO:
Connecting for a Cause | |
The American Society of Clinical Oncology (ASCO) held its annual meeting recently in Chicago. For those who don't know about this meeting, it is a gathering of oncology professionals representing all aspects of cancer care. This gathering of nearly 30,000 included about 350 advocates, attending the meeting to learn and network with other attendees. The days are packed full with concurrent sessions that require those attending to carefully plan their daily schedule, allowing time to find the required session room, likely in another wing of McCormick Place.
The June 14 issue of the National Cancer Institute Bulletin contains an excellent article that focuses on the advocates attending this year's ASCO meeting. In case you've ever wondered what Inflammatory Breast Cancer Research Foundation volunteers do when they attend ASCO, this article will give you a glimpse of the experience. This year Ginny Mason (Executive Director) and Gayla Little (Board Member) and her husband Michael, participated in the annual meeting. Gayla and Ginny received scholarships from the Conquer Cancer Foundation, of ASCO, to help defray the costs of attending. Beginning in 2005, Inflammatory Breast Cancer Research Foundation was chosen for a spot in the Advocacy Booth area, provided by ASCO. However, this year the organization chose not to apply for a booth, allowing room for other organizations who haven't had the opportunity to exhibit in the past.
As you read the article you'll find Board member, Gayla, in one of the photos! (she's paying close attention to the speaker!) Next month we'll feature important breast cancer news from ASCO, but for now click here to learn more about "Cancer Advocates at ASCO: Connecting for a Cause." |
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Upcoming Events | |
June 28-29 - FDA Bevacizumab (Avastin) Hearing; Silver Spring, MD and webcast. Click here.
July 12 - The Ninth Annual Cancer Survivorship Series: Living With, Through & Beyond Cancer: Part IV, Fear of Recurrence and late Effects: Living With Uncertainty; teleconference; Click here.
July 14 - Metastatic
Breast Cancer: Facing Feelings and Fears; teleconference;Click here.
July 14 - FDA Oncologic Drugs Advisory Committee; Silver Spring, MD Click here.
Aug 2-5 - Era of Hope; Department of Defense Breast Cancer Research Meeting; Orlando, FL;Click here.
Aug 8-12 - The Science of Compassion: Future Directions in End-of-Life and Palliative Care;
Bethesda, MD; Click here.
Aug 12-14 - National Male Caregivers' Conference: Men Empowering Men to Care for Women with Breast Cancer; The Sheraton Atlanta Hotel, Atlanta, GA; 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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IBC Feature Article in Living Beyond Breast Cancer Newsletter
Living Beyond Breast Cancer featured inflammatory breast cancer in their Spring 2011 newsletter issue. The article, titled "Understand Inflammatory Breast Cancer", includes typical and uncommon symptoms, treatment options, research in the pipeline, and psychosocial issues surrounding this diagnosis.
This is the second time Inflammatory Breast Cancer Research Foundation has been able to partner with Living Beyond Breast Cancer to provide education and increase awareness of inflammatory breast cancer. A few years ago the two organizations put together a successful teleconference. Dr. Angela DeMichele provided physician input and Ginny Mason brought a patient perspective to the discussion. Lots of great questions from participants made for an educational and lively discussion.
Various survivors were interviewed for the newsletter article, which focuses on the challenges of timely diagnosis, treatment, and the emotional challenges that come with a diagnosis of inflammatory breast cancer. Executive Director, Ginny Mason is quoted extensively, and her smiling face is shown in a photo with IBC survivor Jeanne Calkins. Also mentioned, quoted, and pictured are these IBC survivors: Kommah (Koko) McDowell, and Susan Niebur of the Toddler Planet blog. These survivors tell about their personal experience of diagnosis and living with IBC. Each adds a unique voice to the story reminding the reader of how individual each IBC journey can be. Dr. Massimo Cristofanilli of Fox Chase Cancer Center provided some specific treatment and medical information for the piece.
The Inflammatory Breast Cancer Research Foundation extends a special thanks to Living Beyond Breast Cancer for once again helping to educate and raise awareness of IBC.
Click here to download a .pdf of this issue. |
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WEBSITE UPDATES
By, Carol McWilliams,
ibcRF Volunteer
If you have not visited the Inflammatory Breast Cancer Research Foundation's web site (www.ibcresearch.org) in awhile, you will want to hop over and see what's new.
Recently added: a brand new section titled IBC 21st Century Research. The link is found in the red horizontal menu just under the logo, or click here for the direct link.
You will find selected published IBC research from 2011 back to 2000. There is a link to assist those who are new to reading medical research and another for how to evaluate health information on the internet. On the pages with research abstracts, if free full text is available, that is noted. If it is not available at this time, that is also noted. Each abstract links back to the National Library of Medicine's PubMed database for that particular article.
On the 2011 page, there is a preformatted link for your use. Click on it and it will search the PubMed database for anything on IBC published since January 1st, 2011. That link is in the very first paragraph on the 2011 page.
You can find the older abstracts under the left menu item: IBC in History. This was formerly called "What We Know," but that title really isn't appropriate for older materials.
We would like to hear feedback from IBC patients and advocates. Please email me directly at carol.ibcrf@gmail.com. Please do not hesitate to forward your ideas, additions, or changes to the site. We have more plans for changes and updates, but are interested in what you want to see!
The goal is to make the website one that you willl want to visit regularly to keep up on research, clinical trials, and other information related to IBC. |
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Why Become an Oncologist?
By, Ginny Mason, RN, BSN
Executive Director, ibcRF
Ever wonder why someone chooses to take care of cancer patients? As a nurse and inflammatory breast cancer patient, I've often pondered that question. Sitting in the waiting room week after week, watching the variety of patients come and go, and realizing how many of those patients will not have a good outcome. Would I want to take on that job?
We often think doctors "have it good". The community respect, income, and authority might look inviting, but there are the other aspects that aren't as easily recognized. The long hours, the difficult decisions, and the limitations of medicine can easily outweigh those perceived benefits.
Inflammatory Breast Cancer Research Foundation Medical Advisory Board member, and outgoing President of the American Society of Clinical Oncology (ASCO), George W. Sledge, Jr, MD, gave a outstanding and moving presentation at the recent ASCO Annual Meeting in Chicago. The President's Address is a kind of a "state of cancer treatment" speech that speaks to where we've been, where we are now, and what the future holds for the field of oncology. In that presentation, Dr. Sledge noted that he was drawn into the field of oncology by a patient, Carmelita, and told of the profound effect she and countless other patients have had on his choice of oncology.
As President of ASCO, Dr. Sledge has been doing a lot of extra writing. In addition to all the journal articles and other requirements, he began a regular blog for ASCO. A recent blog, available on CNN, is entitled, "Why I Became An Oncologist". In this piece we get to learn more about Carmelita and the impact she had on the young Dr. Sledge as he was introduced to the world of oncology. The blog is a powerful piece and gives a glimpse into the challenges that come with that education, white coat, and responsibility.
". . . Some doctors are inspired by a great teacher. Medicine is still a profession dominated by old-world apprenticeships, where a mentor's passion can be transmitted to a new generation. I have known several oncologists whose careers turned on chance encounters with inspiring professors.
Others get there by way of their patients. I'm one of these. When I was a resident, cancer patients were the ones who touched my heart. In fact, I can remember the very moment I started my path to becoming an oncologist. . ."
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