Upcoming Events
Dec 1: Understanding Lymphedema; teleconference; 12:00 - 1:15 pm EST. More information Dec 6-10: San Antonio Breast Cancer Symposium; San Antonio, TX. More information Dec 7: Taking Your Pills on Schedule-Adherence: Sharing Responsibility for Your Care; Teleconference; 1:30 - 2:30 pm EST. More information Dec 8: Managing the Costs of Living with Cancer; Teleconference; 1:30 pm - 2:30 pm EST. More information
Feb 24-26 2012:
C4YW/Annual Conference for Young Women Affected by Breast Cancer; Hyatt Regency, New Orleans, LA. More information |
Follow one woman from before her Inflammatory Breast Cancer diagnosis in 2009 through chemotherapy, surgery, radiation and post-treatment in 2011. These photos are frank, they were taken before diagnosis, during chemotherapy, just before mastectomy surgery, radiation markings, immediately post radiation, 16 days post radiation, and final healing of chest wall. She wishes to remain anonymous. Here is her journey....complete with photos taken along the way. Do you Facebook? So do we! 
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Remember Us In Your End of Year Giving
Many people wait until the end of the year to do their annual non-profit giving. Perhaps they want to wait until holiday spending is finished, examine the budget for winter utility needs, or just haven't thought about it in the busyness of day to day living.
We know economic times are tough for many and that includes the non-profit sector as well. The Inflammatory Breast Cancer Research Foundation receives no pharmaceutical or corporate funding and relies solely on individual donations. Administrative costs are kept to a minimum in an effort to direct more than 90% of the funds to the mission and goals. If you believe in the research we've funded and the information and support we provide, you can be a part of that work with your donation. It's thanks to the generosity of people like you that we're able to continue working to change the future of IBC.
Thank you from all of us on the Inflammatory Breast Cancer Research Foundation Board.
To make a donation use: the
ibcRF Cause on Facebook
or the Donations and Fundraising page.
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Spreading the Word about IBC
Ginny Mason was invited to contribute 3 installments as a 'guest blogger' to the Amoena Lifelines blog. While it is primarily bc patients and those who work with bc that read the blog, it is an opportunity to educate people about ibcRF and our work.
The first installment, introducing the Inflammatory Breast Cancer Research Foundation was recently posted. Others will be posted in December and January.
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NEW TRIAL FOR METASTATIC BREAST CANCER
by Ginny Mason, Executive Director
Vaccines have become a hot topic in the oncology world. The evening news often includes a report on a new clinical trial or exciting results from an early trial using a cancer vaccine. For a number of years there has been hope that a patient's own immune system could somehow be used to combat the cancer in one way or another.
There are a variety of vaccine clinical trials ongoing. Some are designed to vaccinate patients against recurrence of disease and others are for treating existing disease. The National Breast Cancer Coalition (NBCC) has chosen to focus on a preventive vaccine as it strives toward its Breast Cancer Deadline 2020. Executive Director Ginny Mason is involved in the NBCC Artemis Project, exploring the development of a preventive vaccine for breast cancer.
The Inflammatory Breast Cancer Research Foundation is also involved in another vaccine project, this one focused on metastatic breast cancer. Silvia Formenti, MD of New York University (NYU), has assembled a multidisciplinary team of advocates, scientists, biostatisticians, physicians, and others to accomplish this goal. The project centers around a productive, sustained interaction between consumer advocates and investigators so that patients are included in the entire process.
There are two Advocate Teams. One connected with NYU: Ginny Mason (ibcRF), Amy Bonhoff & Alice Yaker (SHARE), and the other with UCLA: Sherry Goldman, Shandra Fitzpatrick, and B.J. Dockweiler (ACS). In addition there are Clinical and Lab Teams at both NYU and UCLA (Univ. of California Los Angeles).
 Pictured are Silvia Formenti, MD, Ginny Mason, Sherry Goldman and Amy Bonhoff.
These teams are under the guidance of a Scientific External Advisory Board from various institutions. Funding for this project comes from the Breast Cancer Research Program of the Department of Defense Congressionally Directed Medical Research Programs. (DOD CDMRP). The Multi-Team award is designed to bring together teams from different institutions and different expertise to tackle a complex and important problem in breast cancer.
The basic idea or hypothesis of the proposal asks if it is possible to immunize a patient against her own tumor by blocking a major immune suppressive mechanism while harnessing local radiotherapy to generate an in situ vaccine. If successful, the strategy will result in individualized vaccination that will promote systemic immune rejection of metastases.
The trial is currently enrolling patients at New York University and hopefully the UCLA site will soon be enrolling as well. Both arms of the study will be receiving the trial compound fresolimumab (GC1008) along with radiation therapy. This is an early stage trial designed to study safety and efficacy at two different doses of fresolimumab. Patients will be monitored for adverse events as well as response rate.
While this study isn't exclusive to inflammatory breast cancer, Dr. Formenti feels strongly that this combination therapy may be especially useful in the disease and was anxious to include the Inflammatory Breast Cancer Research Foundation in the project. Dr. Formenti is a radiation oncologist and has a particular interest in inflammatory breast cancer and metastatic breast cancer. She is eager to find novel ways to reduce metastasis and has been exploring various ways to accomplish this.
Later this month those involved in the project will meet either face to face or via conference call to discuss how things are moving forward in the trial and deal with any issues that have arisen since the last meeting. Their was a brief meeting at the August Era of Hope meeting when the above photo was taken.
Learn more about the Fresolimumab and Radiotherapy in Metastatic Breast Cancer trial (NCT01401062).
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PROTEOMICS LEADS to POTENTIAL NEW TREATMENT TARGET for IBC
By Ginny Mason
A recent press release from George Mason University reports that Drs. Emanuel (Chip) Petricoin and Lance Liotta, co-directors of Mason's Center for Applied Proteomics and Molecular Medicine (CAPMM), have identified a protein that appears to drive metasastasis in inflammatory breast cancer.
"When Petricoin, Liotta and CAPMM researchers Julie Wulfkuhle and Rita Circo began to study the cells from inflammatory breast cancer patients, they were surprised. They used the array platform and found that a protein called anaplastic lymphoma kinase (ALK), which was previously unconnected to breast cancer, is highly activated in nearly all the samples they looked at. "When we looked at these breast cancer samples, we saw ALK and the entire ALK pathway lit up like a string of lights," Petricoin says."
Read the complete article.
The data was reported at the AACR-NCI-EORTC International Conference: Molecular Targets and Cancer Therapeutics, held Nov. 12-16, 2011 in San Francisco. Researchers reported ALK amplification was found in 13 of 15 patient tumor samples that were studied. While many are studying genes and their role in cancer, it was the study of proteins (proteomics) that lead to this discovery. Proteomics looks at the proteins on genes as potential targets. Petricoin and Liotta invented the technology called "reverse phase protein array. It's a way of physically arranging proteins to reveal how they work on individual cells, such as cancer cells." This technology has been licensed to Theranostics Health, Inc. a company co-founded by Liotta and Petricoin.
According to the American Association for Cancer Research (AACR) press release, some IBC patients are being evaluated for ALK genetic abnormalities for enrollment in a small, phase 1, dose-escalation clinical trial of a small-molecule ALK/cMet inhibitor at Fox Chase Cancer Center. If validated, the use of anaplastic lymphoma kinase (ALK) inhibitors may be a new treatment approach for patients with IBC.
 | | Dr. Chip Petricoin, Creative Services photo |
The Inflammatory Breast Cancer Research Foundation has been working with Chip Petricoin for the past couple years. Initial conversations with Dr. Petricoin began as we discussed the Side-Out Protocol and how including IBC patients in that trial could help identify molecular and proteomic therapeutic targets in IBC. The Side-Out Protocol is an example of true personalized medicine and is showing that it is possible to bring these advanced technologies to the bedside. It is hoped that this IBC finding may be incorporated into Phase 2 of the Side-Out Protocol. Read more about the Side-Out Clinical Trial.
While this is exciting and promising data the number of tumor samples studied was small, keep in mind that validation of the results will be important as this research moves forward. We are all hopeful that indeed a new therapeutic target has been identified and can be successfully exploited to provide improved survival for IBC patients.
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DEALING WITH SKIN METS
By Susan Freed
 I have been a breast cancer patient since May, 2010. My first experience with skin mets occurred in February, 2011. I was recovering after radiation treatments (following neo-adjuvant chemo, and a modified radical mastectomy for what was believed to be invasive ductal carcinoma). My husband and I had gone to Florida to visit friends and to get away from the cancer "business. "
While in Florida, I began to notice that the skin on my chest and above the lymphedema sleeve was looking mildly bruised and was slightly itchy. I emailed a photo to my breast surgeon, who said it looked to be a radiation reaction. Back at home, I went to my radiation oncologist who prescribed an antibiotic for cellulitis.
After two prescriptions with no improvement, the radiation oncologist ordered a PET scan, which showed no cancer. That doctor sent me to my breast surgeon who had no idea what was going on and called in a dermatologist. The dermatologist gave me a steroid cream and told me to return in a month. After three weeks with no improvement, I returned to the dermatologist, who told me to be more patient. I then went to my medical oncologist who had the dermatologist take a biopsy.
The biopsy showed cancer, and my skin mets ranged in color from purple to pink. The bruised looking area had turned purple, and the itching rash part was a bright pink. I learned that this was Inflammatory Breast Cancer and what I had were skin mets.
Since that time, I have dealt with appearing and fading skin mets. Xeloda was the first chemo to eliminate the skin mets. It worked for two months and cleared up the skin mets pretty nicely, especially up around my neck. This meant I could wear some shirts that did not have to totally cover my neck (like a turtle-neck.) I was not able to wear a bra or prosthesis because my skin seemed to dissolve whenever anything rubbed against it.
I began to see an IBC specialist, and he did a PET scan and decided to switch me from Xeloda to Ixempra with the hope of clearing my skin mets and shrinking the cancer in my chest wall. My husband and I had been taking photos of my skin mets every third day to gauge the progress of the chemo against my skin mets.
When they finally began to subside substantially, I was able to wear my prosthesis and a bra most of the time without my skin becoming irritated, except for the area under my arm. This area seemed to stay pink and bumpy. I developed a spot of pink rash on my lower chest, closer to my rib cage, but it turned brownish and looked healed. I had five rounds of Ixempra, at three week intervals. The fourth round of Ixempra had me miserable for nearly the entire time between chemo treatments. The fifth round had me feeling great, but the skin mets began to spread rapidly, creeping across my rib cage and getting thicker under my arm to around my back.
Throughout this entire time, my arm with the lymphedema swelled and subsided. The pink color on it seemed to clear up, especially on the upper arm. The forearm remained somewhat pink and stayed harder and more swollen.
On a recent return to the IBC specialist, we decided that the Ixempra was no longer controlling my skin mets. I have been put on the combination of Gemzar and Carboplatin. After a few days, their color seems to be changing, and I think they are looking better. I know that skin mets look different on different people. Some people have rice-like growths under their skin, but I have not experienced anything like this.
I do not understand why some IBC patients get skin mets while others do not. People with typical breast cancer are said to be able to have "an inflammatory skin recurrence," whose differentiation from IBC is not clear to me.
EDITORIAL NOTE: Chest wall disease or skin metastasis appears to be more common in inflammatory breast cancer but can occur with other types of breast cancer. Chest wall recurrence following treatment for typical breast cancer is sometimes referred to as "secondary inflammatory breast cancer" but there is debate about this in the breast cancer community. This patient story is just one experience, treatment will vary from patient to patient based on the specific markers of the disease and previous treatment. It is important to pay attention to the skin of the chest and especially the mastectomy scar area for changes in color, texture, and sensitivity. Any change that doesn't resolve in a reasonable period of time with home care should be reported to your healthcare provider for evaluation and perhaps biopsy to rule out metastatic spread of the cancer.
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SURVIVORS EDUCATING ABOUT IBC
Susan Niebur
Here are some places my work has appeared this month, besides my personal blog, Toddler Planet.
- USA Today: Women with Advanced Breast Cancers Feel Left Out, Forgotten by Liz Szabo, 20 October 2011 (picked up by The Tennessean, Lansing State Journal, and the Chicago Sun Times);
- Freshly Pressed, WordPress.com feature, popular among bloggers: Metastatic Breast Cancer, 26 October 2011;
- Orlando Sentinel: Mom Living with Cancer Eloquently Shares Her Life 17 October 2011; and
- Huffington Post: Seeing the Metastatic Side of Breast Cancer by Dr. Elaine Schattner, 13 October 2011.
I also spoke about the need for increased research for advanced and metastatic breast cancer at the 2011 Blogalicious conference, celebrating the diversity of women bloggers and participated in a twitter party informing #bcsm participants and health care providers about living with advanced or metastatic breast cancer. A lot of the buzz lately has been on metastatic breast cancer, which kills over 90% of breast cancer patients and yet receives only 3% of the research funding! Ridiculous.
 Jeanne Calkins
Although breast cancer is thought of as one disease, there are many different types of breast cancer, each with its own characteristics. A lump, hard knot, or thickening inside the breast or underarm area may be one symptom of breast cancer. However, with breast cancer there are other visual changes of the breast that you should be aware of.
While on vacation, Jeanne Calkins of Kansas City, MO, noticed thick ribbed lines underher right breast. She made an appointment to see her doctor. Although Jeanne's doctor couldn't feel any lumps, she ordered a mammogram which found nothing. Over the course of 18 months, Jeanne's breast began to feel and look different. Her breast was sometime hot, the nipple inverted, and her breast looked pitted like an orange peel. An oncologist made an Inflammatory Breast Cancer (IBC), Stage IIIC diagnosis after a physical exam, ultrasound, and two skin punch biopsies.
IBC is an unusual and aggressive type of invasive breast cancer. Unlike other forms of breast cancer, IBC often lacks a distinct lump or tumor. Instead, cell can grow in sheets that spread through the breast. Unless there is a defined lump, IBC may not be found by a mammogram or ultrasound. Because IBC cell spread easily to other parts of the body,it requires prompt diagnosis and treatment.Jeanne's cancer was also found in the lymph nodes of her armpit. Just five days before her 50th birthday, doctors notified Jeanne the cancer was aggressive and they wanted to start treatment immediately. Her prognosis was 18 months. Jeanne's treatment plan included eight treatments of chemotherapy, a mastectomy, removal of all lymph nodes, an additional eight treatments of chemotherapy, and 34 radiation treatments. Friends and family were a big support for Jeanne throughout her treatment and healing process. Today, she celebrates nearly six years of survivorship.
Shared from: http://kansascity.info-komen.org/site/MessageViewer?em_id=25058.0
What are others up to? Let us know! Send us a note, or go to our FaceBook page and share your IBC awareness efforts by commenting under that topic. Join our A-Team discussion list to bring IBC awareness to local, state and national attention. Share your activities, get ideas and learn from others. Find out more about the A-Team.
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