| Happy 11th Anniversary to IBCRF! |
By, Ginny Mason, RN, BSN
Executive Director, ibcRF
It's hard to believe but last month the Inflammatory Breast Cancer Research Foundation (ibcRF) celebrated its 11th anniversary (or birthday)! So much has happened since filing for non-profit status back in the summer of 1999. Over the years we've lost Board members due to metastatic disease, busy schedules and change of interests. While the projects and people have sometimes changed, we have remained dedicated to our original mission and goals statement.
"The Inflammatory Breast Cancer Research Foundation is dedicated to the advancement of research of inflammatory breast cancer, leading to finding its causes and increasing the effectiveness of its treatment. Increasing awareness of IBC symptoms, leading to earlier and better clinical methods of detection and diagnosis is the other principal activity...... The Inflammatory Breast Cancer Research Foundation seeks to assist scientists in their work so effective and meaningful detection and diagnosis, prevention and treatment can be pursued and achieved."
What started out as a small group of interested individuals connected via email, has grown to a respected and vital part of the breast cancer research and advocacy community. Thanks to the efforts of a dedicated group of volunteers; there is an information packed website, email discussion lists, and e-newsletter that help connect those in the IBC community. Website visitors with questions can use the "Contact Us" link and receive a personal message from a member of the Response Team. Individuals without internet access can also receive a personal response after leaving a message with the answering service.
In 2005 the Inflammatory Breast Cancer Research Foundation BioBank and Clinical Data Base was launched and now has over 160 patients enrolled. This award winning project is unique as an advocacy owned and operated long-term IRB (Institutional Review Board) approved research study. It is patient driven, engaging patients (or their representative), to be actively involved as they submit copies of their medical records and bank their tissue samples left over from biopsy and/or mastectomy. This project allows any patient to be a part of research without ever leaving their home community. More participants are needed to enroll and bank their tissue since scientists are anxious to use these de-identified materials for research. For more information or to participate contact: biobank@ibcresearch.org.
In the last year, thanks to a partnership with the Milburn Foundation (MilburnGift.org) the Inflammatory Breast Cancer Research Foundation was able to fund two important research projects. Diane Palmieri, PhD, of the National Cancer Institute is working to develop a mouse model of triple negative inflammatory breast cancer brain metastasis. Dr. Bryan Schneider of Indiana University, is using sophisticated Next Generation Sequencing to compare normal breast tissue, with triple negative breast cancer and triple negative inflammatory breast cancer. An impressive $85,000 has been awarded for these important research projects. Work is underway to begin another grant cycle before the end of the year.
Some would question why, after 11 years, the Inflammatory Breast Cancer Research Foundation hasn't grown to a larger organization. Being a small "kitchen table" group is deliberate. There are a number of organizations that do a great job of focusing on general breast cancer, so there's no need to duplicate that work. The Inflammatory Breast Cancer Research Foundation was the first non-profit organization dedicated to the specific niche' of inflammatory breast cancer. With a focus on facilitating research while also raising awareness, the Inflammatory Breast Cancer Research Foundation remains, "committed to finding the cause."
Our thanks to each of you for the part you play in this important work. Together we ARE making a difference and we'll continue to remind people, "YOU DON"T HAVE TO HAVE A LUMP TO HAVE BREAST CANCER." |
| Upcoming Events | |
Oct. 6-7 - Second International Inflammatory Breast Cancer Conference; Marseille, France
Oct. 7 - Living Well with Metastatic Breast Cancer; Treatment and Research Update; Teleconference
Oct. 16 - Emerging Advances & Current Approaches to Metastatic Breast Cancer; One Day Conference; Indianapolis, IN
Oct. 28 - Living Well with Metastatic Breast Cancer: Managing Symptoms and Side Effects; Teleconference Click here.
Nov. 13 - Conference: News You Can Use: Breast Cancer Updates for Living Well; 9 am - 6 pm; Philadelphia, PA 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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Indiana University Physician Receives Funding for Rare, Aggressive Breast
Cancer Research
 Press Release, August 9, 2010, Indianapolis:
Women with a relatively rare but aggressive form of breast cancer may benefit from a unique tissue bank of normal breast tissue at the Indiana University Melvin and Bren Simon Cancer Center. Bryan Schneider, M.D., and doctoral student Milan Radovich will study the underlying molecular underpinning of inflammatory breast cancer using cutting edge technology called Next Generation Sequencing with the support of a $50,000 grant from the Inflammatory Breast Cancer Research Foundation and the Milburn Foundation partnership. This work will capitalize on the ability to compare genetic abnormalities against normal breast tissue. "To identify the critical molecular changes that distinguish normal from malignant, and to detect the earliest indication of the transformation, researchers must be able to study normal breast cells," said Dr. Schneider, the recipient of the IBC grant. "Since 2005, hundreds of women have donated tissue to the Susan G. Komen for the Cure Tissue Bank ® at the IU Simon Cancer Center to make it possible for researchers to identify abnormalities in cells. We are hopeful that the information contained in the Bank will direct scientists to cures for the many forms of breast cancer." Dr. Schneider is an assistant professor of medicine at Indiana University School of Medicine and a researcher and clinician at the IU Simon Cancer Center. Click here to read the rest of the news release.
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A note from our Executive Director
Ginny Mason, RN, BSN
This month we are highlighting the work of Dr. Bryan Schneider and his lab at Indiana University, Indianapolis, IN. Dr. Schneider received one of the two grant awards made possible through a collaborative effort of the Inflammatory Breast Cancer Research Foundation and the Milburn Foundation Milburn Foundation. Dr. Schneider and colleagues are involved in cutting edge research comparing normal breast tissue with various types of breast cancer to learn more about the similarities and differences in an effort to find new targets for treatment. In this issue you'll find the news release and link prepared by Indiana University announcing the grant to Dr. Schneider. Be sure to click on the link at the end of the printed piece to read the rest of the release. We are excited that this news release has appeared multiple times in the media giving important attention to Dr. Schneider's amazing work as well as the Inflammatory Breast Cancer Research Foundation's role in providing funding. Be sure to read the explanation of Next Generation Sequencing, the crux of Dr. Schneider's winning grant proposal, provided by graduate Ph.D. student Milan Radovich. Milan, and others in Dr. Schneider's lab, are making history in the study of inflammatory breast cancer with this cutting edge research. It's great to be working with dedicated scientists like Dr. Schneider who care about patients and want to see an end to this disease. |
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Using a New Cutting Edge Technology to Identify Novel Drug Targets in IBC
Milan Radovich
Ph.D. Graduate Student
Dept. of Medical & Molecular Genetics
Indiana University School of Medicine
The key to discovering the cure for inflammatory breast cancer (IBC) is having a complete catalog of the changes that occur in normal breast cells to transform them into aggressive tumors. Until very recently, scientists have not had the tools to comprehensively profile these changes and utilize them for drug discovery. In the last two years, a new technology called "Next-Generation Sequencing" has revolutionized research in cancer biology. This technology has allowed scientists, for the first time, to study the entire transcriptome (the set of all active genes) to look for deleterious mutations that cause cancers to grow, survive, and to become resistant to therapies. Our research will utilize this technology for the first time in IBC. By sequencing the transcriptomes of IBC tumors and then comparing them to the transcriptomes of normal breast tissues, we will be able to point out what active genes are causing the formation and survival of these tumors. Once we have identified these genes, we will then leverage the expertise of talented researchers at the Indiana University Simon Cancer Center (IUSCC) to develop drugs that target these abnormal genes, hopefully leading to new effective treatments for this disease. We have recently applied the next-generation sequencing approach in studying triple-negative breast cancer (TNBC.) In a study soon to be presented at the 2010 San Antonio Breast Cancer Symposium, we compared the transcriptomes of 10 cases of TNBC to 10 normal breast tissues derived from the Susan G. Komen for the Cure® Tissue Bank at the IUSCC. We analyzed the data to identify genes that were being abnormally produced in the cancers and then cross-referenced databases that gave us clues to the functions of these abnormal genes. The product of this research is a set of high priority drug targets for which we are now actively developing compounds against. We were also able to gain understanding into why previous clinical trials utilizing targeted therapies have failed in TNBC and which new targeted therapies hold promise.
We believe this same approach will yield important drug targets in IBC and also give us unprecedented insight into understanding the aggressive etiology of this disease. In summation, there is a vast undiscovered territory of potential therapeutic targets in IBC for which exploration has been hampered by the absence of the right technology. We now believe that the use of next-generation sequencing technology will allow us to identify the right targets to hopefully cure this disease. |
From the NCI Cancer Bulletin; September 7, 2010- Volume 7/Number 17
Chemotherapy Affects Brain Structure of Breast Cancer Patients
A new study has provided some of the strongest direct evidence to date that chemotherapy has physical effects on areas of the brain that, when altered, could result in the array of cognitive symptoms that is often called "chemobrain." The study was published online August 6 in Breast Cancer Research and Treatment.
In a small study of women with breast cancer, researchers from the Indiana University School of Medicine used MRI scans to show that chemotherapy was associated with a decrease in the density of brain gray matter. The affected areas include those involved in memory and in the ability to process information. Although several other studies have shown similar changes in these areas of the brain, this was the first study to follow women prospectively and to compare scans before and after chemotherapy.
"The alterations in gray matter density observed in the [chemotherapy] group are... consistent with the pattern of cognitive complaints and impairment found in neurocognitive studies," wrote Dr. Andrew J. Saykin and colleagues.
The study included 17 women with breast cancer who underwent chemotherapy after surgery, 12 women with breast cancer who did not receive chemotherapy after surgery, and a control group of 18 healthy women. The initial MRI scans, performed shortly after surgery in the participants with cancer, showed no notable differences in gray matter density among the three groups. One month after completion of chemotherapy, however, MRI scans revealed notable decreases in gray matter density in women with breast cancer, as well as changes in gray matter density in women who received surgery only, although the changes for these women were not as great. No changes were seen in women in the control group. After 1 year, women treated with chemotherapy had recovered gray matter losses in some regions, but other deficits persisted.
Exactly how chemotherapy may be causing these changes is unclear, said study co-author Dr. Brenna McDonald. "However, the finding that the changes appear to resolve naturally to some degree in the first year after chemotherapy is completed is a very positive one," she wrote in an e-mail message. Because of the limited follow-up in the study, she continued, it's unclear how much further recovery may occur naturally. A number of studies have shown that such cognitive effects can persist for many years, she added. Additional studies are investigating whether other therapies, such as tamoxifen, may have similar effects on brain structure.
http://www.cancer.gov/ncicancerbulletin/090710/page3#d
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ASCO Blogs -- Social Networking for the Oncology Community
"In the spirit of connecting, ASCO (American Society of Clinical Oncology) has launched a large-scale social networking project, www.ASCOconnection.org.
This site creates opportunities for the oncology community at large to engage in direct communication about the issues of the day."
ASCO President and Inflammatory Breast Cancer Research Foundation Medical Advisory Board member, George
Sledge, Jr. MD, is a featured 'blogger' with a recent post on the topic of end-of-life care.
If you'd like to learn more about oncology challenges in developing countries, studies that are getting attention, policy concerns or other topics in the field of oncology, you can log in as a registered guest to participate, even if you are not an ASCO member. ASCO members can use their ASCO member username and password.
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