Articles below were written for the Focus on IBC monthly newsletter by Ginny Mason, RN, BSN, Executive Director of the Inflammatory Breast Cancer Research Foundation

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Clinical Trial Update [read the complete December 2012]
Whether you are newly diagnosed or dealing with metastatic inflammatory breast cancer, you might want to consider a clinical trial. Unfortunately there are not as many clinical trials available for inflammatory breast cancer as for standard breast cancer. To add to the challenge, the inclusion/exclusion criteria are often so strict and narrow that patients are often not eligible due to previous treatment or other details.

One place to find clinical trials is through the National Cancer Institute’s (NCI) website You’ll find an RSS feed of updated breast cancer trials on the Inflammatory Breast Cancer Research Foundation website from this source.  While some find the NCI website cumbersome to use it contains a wealth of information.  Once on the site you just type in “inflammatory breast cancer” then click ‘search’ and a listing of trials will come up that include inflammatory breast cancer (IBC).  The trials may not be specific to IBC only but allow IBC patients to enroll.  You need to click on the individual trial to read the specifics and find out if it is of interest.  Contact information for the study coordinator is usually listed as well, should you want to contact them personally rather than just pass the information on to your physician.

One example of a trial currently listed is This is a clinical trial for Triple-negative breast cancer patients that allows IBC patients to enroll but isn’t exclusive to IBC.  However, this trial for a MUC1 Vaccine is only for patients who have completed standard therapy for triple-negative inflammatory breast cancer and not open to those with metastatic disease.  Vaccine trials are somewhat different than those evaluating a new therapy.

Another website that has been developed specifically to aid breast cancer patients in finding appropriate clinical trials is  This is more of a ‘full-service’ website that not only has trial listings, they offer a trials matching program that allows patients to put in specifics about their disease and location then use that information to help locate trials that might be of interest. This website is a non-profit service designed to encourage those facing breast cancer to consider clinical trials for optimal care.  Trials listed on are also listed here, along with industry or hospital sponsored trials that might not be found on

At the October 13 Metastatic Breast Cancer Network Conference, Elly Cohen, PhD, Program Director for, spoke to the group about the capabilities of the website and how the team continues to fine tune and update the site to meet the needs of the breast cancer community. She walked conference participants through using the site for various subtypes of metastatic breast cancer (even inflammatory breast cancer) to show how the site is user-friendly and contains volumes of information. The trial matching program is especially useful and can help patients find trials in their geographic area. Should you want to explore “all trials” you can do that, then narrow down the search by subtype.  If you search for “inflammatory breast cancer” and click on “metastatic disease” you’ll be asked to narrow down your search to hormone status and metastatic disease sites. This allows the software to try and find the trials most appropriate for you.

When exploring clinical trials remember that phase I trials are usually fairly small, testing the safety of the investigational compound, dose and identifying side effects.  Phase II take place after safety and dose or dose range has been determined in the phase I trial.  Larger numbers of patients are enrolled and additional safety signals and side effects are evaluated along with effectiveness.  When a compound moves to phase III, the compound is usually compared to standard of care treatment to determine if the new compound is more effective than the standard of care, while continuing to monitor for side effects.  These trials are often quite large and take a lot of time and energy to complete.  Regulatory approval is usually based on the outcome of phase III trials.

It’s important to remember that clinical trials are vitally important if we are to learn what treatments are the most effective with the least amount of side effects.  Those who participate in clinical trials are closely monitored and the care is often less costly and higher quality than for standard treatment.  Trial participants should not see themselves as guinea pigs but as playing an important role in helping to understand their disease and developing improved treatment.

SystHERs Registry [read the complete November 2012]
Genentech is hosting a new observational study to learn more about life for Her2 metastatic breast cancer patients.  This multi-institutional study opened in June of 2012.  The name SystHERs (Systemic Therapies for HER2+ metastatic breast cancer study) defines the project and builds on a previous registry study hosted by Genentech.

The purpose of the SystHERs Registry is to evaluate treatment patterns, and safety in patients with Her2 positive (HER2+) metastatic breast cancer.  An observational study such as this collects both clinical and patient reported data.  Eligible patients need to have an initial metastatic breast cancer diagnosis that has not been previously treated with systemic therapy.  Patients may be enrolled up to 6 months after this diagnosis.  Patients will be followed and study data will be collected for up to 8 years.

Unlike a traditional clinical trial where patients are randomized to a standard treatment arm vs. standard treatment with a new medication, this is a different model.  In this observational study treatment is determined by the physician and patient rather than predetermined by the study.  Again, patients must be 18 years of age or older and diagnosed with Her2+ metastatic breast cancer no more than 6 months before enrollment.  To be eligible for the registry patients may not have received systemic therapy for the metastatic diagnosis.

Currently there are 70 locations open or opening for the Registry with the plan to add locations and bring the total to 100.  It takes a significant amount of time for an oncology office to participate in this project, limiting the number who are willing to participate.  Some of the participating sites listed on-line are not ready to accept patients yet, but are in process, so check-back if you don’t see one in your area yet.  The Registry hopes to have 10 patients enrolled in each of the 100 sites for a full enrollment of 1000 patients.

A steering committee consisting of breast oncologists, Genentech staff, and advocates has been working together to develop the protocol and guidelines for the project and will continue to be “hands on” for the duration of the study.  Dr. Debu Tripathy of USC Norris Comprehensive Cancer Center currently chairs the steering committee.  ibcRF Executive Director, Ginny Mason and Musa Mayer of provide an advocate voice and perspective to the steering committee.  Ginny and Musa are working closely with others on the steering committee to choose appropriate patient reported outcomes (PROs) tools for the Registry.  Easily understood, comprehensive PRO’s are necessary if quality data is to be collected.  By asking the right questions, important long-term data can be collected in an effort to better understand the patient experience for those living with Her2+ metastatic breast cancer.

If you or someone you know meets the eligibility criteria for the SystHERs Registry or just to learn more, go to:

Clinical Trial Spotlight [read the complete October 2012]
Unfortunately there are few clinical trials designed to meet the needs of the inflammatory breast cancer community. As trials are listed it is important to share the information so those with interest are aware of the trials.  The Inflammatory Breast Cancer Research Foundation’s web site has an RSS feed from showing available breast cancer trials but it takes a bit more ‘digging’ to locate those trials that include inflammatory breast cancer.

Recently a trial sponsored by the TBCRC (Translational Breast Cancer Research Consortium) opened at the Dana Farber Cancer Institute for patients with inflammatory breast cancer or patients with local-regional recurrence after mastectomy.  This is a Phase I study, meaning that it is designed to determine the maximum dose and safety of the trial medication when combined with radiation. Phase I trials are not designed for efficacy but often activity signals are observed that help guide the remainder of the process.

DFCI 12-142 or Veliparib with Radiation for Inflammatory or Locoregionally Recurrent Breast Cancer combines Veliparib, a PARP inhibitor, with radiation therapy.  PARP family enzymes play an important role in DNA damage response. The design of this trial hopes to maximize the synergy of the PARP inhibitor when combined with radiotherapy.

Read the specific details of this trial and contact information.

Note: This information is intended as education only and does not imply endorsement of any particular treatment by ibcRF

Breast Cancer: New Horizons, Current Controversies [read the complete September 2012]
Inflammatory Breast Cancer Research Foundation Executive Director Ginny Mason had the opportunity to both attend this recent conference at Harvard Medical School and participate as faculty for a session focusing on inflammatory breast cancer.  This 3-day meeting brought together about 350+ members of the oncology community and covered a wide variety of topics important to the breast cancer community.  This is an important continuing education program and provides up-to-date information for those professionals who may not be able to attend the large educational meetings. 

This year’s conference dedicated two sessions to inflammatory breast cancer.  Dr. Beth Overmoyer, Assistant Professor of Medicine, Harvard Medical School and Director of the Inflammatory Breast Cancer Clinic at the Dana Farber Cancer Institute, gave an outstanding review of the diagnosis and treatment of inflammatory breast cancer specifically highlighting the differences in presentation between inflammatory breast cancer and locally advanced breast cancer.  A panel discussion followed Dr. Overmoyer’s presentation bringing together representatives from various disciplines involved in the diagnosis and treatment of inflammatory breast cancer.  Dr. Craig Bunnell of Dana Farber/Brigham and Women’s Cancer Center served as moderator and provided challenging case studies for the panel.  As the only advocate on the program, Ginny had the opportunity to call attention to the NCCN treatment and screening guidelines that have been developed for inflammatory breast cancer and how they can assist physicians in the diagnosis and treatment of inflammatory breast cancer.  Following the panel discussion there were multiple requests for information about the Inflammatory Breast Cancer Research Foundation and services provided.

Dr. Overmoyer also included an update on her current inflammatory breast cancer research project a JAK2 inhibitor study.  This work is funded in part by a grant from the Inflammatory Breast Cancer Research Foundation.  This is novel research exploring how this particular pathway (IL-6-JAK-STAT) is relevant in breast cancer, particularly inflammatory breast cancer.  This topic was addressed broadly in an ancillary program one evening during this year’s American Society of Clinical Oncology Annual Meeting.  The transcript as well as the presentations themselves are available online as a continuing education program through PeerView.

JAK inhibition in cancer treatment applies to a variety of cancer types.  The program covers gastric cancers, lymphomas and leukemias, as well as others.  This ability to use a targeted therapy in a variety of cancers makes it of broader value and encourages the development of other such products by the pharmaceutical industry.

As you will learn from Dr. Overmoyer’s presentation, she has plans to move as quickly as possible into clinical trials for both inflammatory breast cancer and metastatic breast cancer, bringing new treatments to a population that often has limited treatment options.

Redesigning Clinical Trials to Test Therapies That Could Prevent Metastasis [read the complete July 2012]
The June 12 issue of the NCI Cancer Bulletin (Volume 9/ Number 12) contained a fascinating and thought provoking article titled “A Conversation with Dr. Patricia Steeg on Redesigning Clinical Trials to Test Therapies that Could Prevent Cancer Metastasis.”

Dr. Steeg heads the Women’s Cancers Section in NCI’s Laboratory of Molecular Pharmacology and also serves on the Medical Advisory Board for the Inflammatory Breast Cancer Research Foundation.

The NCI Bulletin piece follows an article “Perspective: the Right Trials”
( published May 30 in Nature where Dr. Steeg focused on the need for clinical trial redesign if we are to adequately test therapies for the prevention of metastasis.  To date most research is aimed at stopping the growth of cancer and trials are developed to determine the efficacy and safety of compounds that stop or delay cancer growth.  These clinical trials rely upon measurement, typically by imaging, of the tumor to document regression, stability, and progression.  Therein lies the problem.  When you’re trying to prevent metastasis with a compound, what do you measure to prove it is working?

As Dr. Steeg says, “metastasis research is tough to do.  There is no in vitro, or lab bench, model for metastasis, so you have to use animals and the experiments are long and complex.”  Even when this work is a success in animals, it hits a huge speed bump when trying to move it to human clinical trials.

To  move this type of much needed research forward Dr. Steeg proposes “phase II randomized metastasis-prevention trials”.  Phase I trials evaluate safety and often point to some activity, then Phase II trials work to further study safety and determine the maximum tolerated dose (MTD).  In Dr. Steeg’s “phase II randomized metastasis-prevention trials”  the compound would move from Phase I and combine it with standard of care with the goal of metastasis prevention.  Patients enrolled would either be free of metastasis with high risk for developing metastasis or those with limited metastasis that have received standard therapy.  Patients would be randomized to standard of care with the new agent or placebo.

This is a new way of thinking about drug development and validation and is likely to be criticized by some in the field.  However, as a patient and someone who desperately wants to find answers that will eliminate metastatic disease, it not only demands my attention, it demands my support.  Nearly 40,000 women will die again this year of breast cancer and that number has only changed minimally in the last 10 years.  If metastasis could be prevented that number would change dramatically.

I encourage you to read both the NCI Bulletin interview with Dr. Steeg and then the article in Nature.

…And She’s Still Smiling! [read the complete June 2012]
This month I’d like to introduce you to an amazing inflammatory breast cancer survivor, Krysti.  We first met not long after her surgery for bilateral (both breasts) inflammatory breast cancer (IBC) in 2005.  Even in the midst of aggressive treatment Krysti was anxious to meet others who shared her diagnosis.  The gathering of IBC folks from Indiana, Michigan, Kentucky and Ohio was the perfect place to ask questions and see how others managed to cope with IBC.  Those gathered were at various stages of IBC treatment as well as long-term survivors, no longer in treatment. It can be powerful for those in active treatment to see “there is life after IBC.”

Krysti was quoted by CURE magazine as saying, “Two weeks after surgery, I met Ginny Mason, the Executive Director of the Inflammatory Breast Cancer Research Foundation, who was doing a meeting in Indianapolis…….I walked in and met all these inflammatory women, and it was amazing……she (Krysti) dived right into the information, saying her motto has always been, “better the beast I know than the one I don’t.” Read the complete article about Krysti in CURE.

Starting her journey at stage IV has made things even more challenging.  Not one to sit back and wait for  someone else to make suggestions and decisions, Krysti takes an active role in her treatment by learning everything she can about IBC and exploring potential clinical trials.  She calls herself a “clinical trial junky”!  Armed with the scientific training she received through the National Breast Cancer Coalition’s Project LEAD science training program; an Indiana University Simon Cancer Center Breast Cancer Research Program and other programs, she attends breast cancer conferences eager to learn about current treatment advances and look for future treatment options.

Krysti has been able to use her knowledge and patient experience to help others through her work with the Young Survival Coalition.  She knows first hand the challenges young women face juggling the many demands of family life and cancer.  She’s also active in metastatic breast cancer initiatives to bring more awareness to stage IV disease and need for research in this area.

A series of clinical trials have managed to keep her lung lesions somewhat under control, although the current trial requires travel to Tennessee regularly for the trial medication and assessment.  Between side effects and travel she often has little energy left for other things but those who know Krysti, also realize she’s known for pushing the limits on a regular basis!

In the spring of 2010, while being treated for a sinus infection, Krysti began to worry that her symptoms were more than just sinus problems.  When the treatment didn’t seem to be taking care of the problem she talked to her doctor and suggested evaluation for brain metastasis.  Unfortunately, Krysti’s instincts were right and the MRI found a small lesion on the cerebellum.  With just one small lesion, she was a good candidate for something called Gamma Knife surgery.  “Gamma Knife (R) surgery, sometimes referred to as stereotactic radiosurgery (SRS), is a non-invasive method for treating brain disorders.  It is the delivery of a single, high dose of irradiation to a small and critically located intracranial volume through the intact skull.  It is preferred for its extreme accuracy, efficiency and outstanding therapeutic response.”  (

Even in the midst of this new challenge, Krysti promised to share the experience with her friends via photos and commentary.  As the photos arrived there was Krysti smiling for the camera while she waited for the hardware frame to be fitted to her head (halo).  Then came the photo of Krysti on the phone… spite of the metal halo she was chatting away with someone!  The photos continued, documenting the event with a smiling Krysti in each one.  What a gift we’d been given!  Krysti showed us that Gamma Knife isn’t the awful procedure we’d pictured in our minds.  For many of us knowledge is power and seeing photos like Krysti’s can help erase some of that “fear of the unknown” should we have to face Gamma Knife treatment at some point in our IBC journey.

I’m happy to report that Krysti has kindly shared her pictorial Gamma Knife journey with the Inflammatory Breast Cancer Research Foundation. She’s worked with our web master Carol, to put together a page in the photo section of the website journaling this experience.  Krysti has been through this experience two times, once in 2010 and again in 2011 with good results.

Krysti continues frequent, regular trips to Vanderbilt for medication and monitoring of her current clinical trial. Recent scans show that the trial drug is working and in spite of some difficult side effects, Krysti is grateful.  She’s enjoying family, work, friends, and just life in general.  For now she doesn’t have to be shopping for another clinical trial……but you can be sure she’ll be following the happenings at the American Society of Clinical Oncology (ASCO) Annual meeting, so she’s prepared for whatever is next.

Oh Those Side Effects of Treatment! [read the complete March 2012]
Chemotherapy is one of those “necessary evils” for those diagnosed with inflammatory breast cancer (IBC).  With such an aggressive disease treatment is usually equally aggressive in order to gain control.  With that aggressive treatment comes a variety of side effects or adverse reactions.  Unfortunately many folks are hesitant to discuss these problems with their physician or other healthcare staff and ‘suffer in silence’ with these often debilitating problems.  It’s important that patients, or their advocate, speak up and tell the healthcare team about side effects and seek solutions, if possible.  A dose adjustment may be needed or other interventions to deal with the problems.

One common side effect of many chemotherapies and pain medications is constipation….not a typical subject of dinner party conversation but certainly a significant problem!  There are numerous over the counter remedies on the market as well as prescription products to combat this problem.  However, some people prefer to look for alternatives and would prefer not to add yet another medication to the mix  Friends may suggest prunes or prune juice, another will tell you to try a big glass of warm water first thing in the morning, while yet another insists that a sure fire solution is lots and lots of fiber.  Read on for more advice!

While reading an on-line discussion on this topic recently, I was reminded of a recipe I received via email in the summer of 2000.  After spending far too much time searching old emails and shuffling through dozens of files, I stumbled upon a printed copy of the famous recipe and shared it as part of the on-line discussion.  Finding and reading the recipe was a walk down memory lane.  The email came from a dear friend and IBC survivor, Norma, who had gotten the recipe from another friend in the northwest.  Haven’t heard from Norma for a while but pray she remains NED (no evidence of disease) and is doing well.  Just in case any of our readers are dealing with this issue, I decided to share the recipe here.

Yakima Valley Anti-Constipation Fruit Paste
1 lb. pitted prunes
4 oz senna tea leaves (found at health food stores)
1 lb raisins
1 lb dried figs, stems removed
1 cup lemon juice

Prepare the tea using 2 1/2 cups boiling water.  Add tea leaves and steep for 5 minutes.  Strain tea to remove leaves.  Place 2 cups of tea in a large pot.  Add all of the fruit to the tea and boil the mixture for 15-20 minutes, until fruit is soft.  Remove from heat and add the lemon juice.  Allow to cool.  Use mixer or food processor to turn the mixture into a paste.  Place in containers and freeze those not being used right away.  Dosage: 1-2 Tablespoons per day.  Can be spread on toast, English muffins, rice cakes, etc.  Add some raspberry or strawberry jam for change of flavor if desired.

This is an all natural product, no preservatives or chemicals, and it tastes good!

Remembering IBC Advocate, Susan Niebur [read the complete February 2012]
On Monday, February 6, I opened my email to find a new post on my friend’s blog, titled “Goodbye”. I hesitated clicking on the link, fearing the worst.  Susan’s previous post had been about her recent hospital stay and treatment for another bout of pneumonia. She had come home on oxygen and continued battling intense pain due to the spread of the inflammatory breast cancer in her bones. In spite of the pain, oxygen tank, and start of hospice care, Susan’s humor and amazing outlook shone throughout that post. She shared snippets of a conversation with her husband upon her return home and I marveled at their ability to joke in the midst of the stress. That was Susan’s final message on “Toddler Planet…The joy of life after cancer”, where she shared her life and cancer journey.

The post “Goodbye” was posted by Susan’s husband, Curt.  He wrote, “Susan Niebur passed away on February 6, 2012 after a lifetime of love, crusades, and strength. Over the last five years she lived with inflammatory breast cancer, a rare and aggressive form of breast cancer that presents without a lump. She chronicled her life with cancer here on her blog Toddler Planet with honesty and emotion that were even more rare and aggressive.”  I struggled to get through the remainder of the post as tears streamed down my face.  It was just so very wrong and I didn’t want to believe Susan’s life had been cut short by this dreadful disease.  Susan touched so many lives as evidenced by the nearly 900 responses to the “Goodbye” post.

I’m one of the lucky ones who got to know Susan personally.  Had it not been for our shared diagnosis of inflammatory breast cancer (IBC) it is unlikely our paths would have crossed.  Susan  was an astrophysicist, mother of two young boys, and lived in suburban Washington, DC.  It wasn’t long after Susan’s diagnosis of IBC that she contacted the Inflammatory Breast Cancer Research Foundation and I was the one who returned her call.  That was the beginning of our five year friendship.  My heart ached for this young mother (34) who was enjoying life with her toddler and five month old when IBC cruelly interrupted her life.  At a time when she was savoring the joy of breastfeeding and bonding with her young son, he had to switch to bottle feedings due to potential adverse effects of chemotherapy and other medications.  During those five years of treatment and recurrence Susan remained optimistic that her disease could be controlled, and it was for a while.  From ‘new mother’ to ‘cancer patient’ and removal of both breasts.  Quite a drastic change, but Susan continued to handle it with grace and humor as evidenced by her blog posts.  Through lymphedema, removal of ovaries, and fatigue she prayed to retain the “cancer free’ status she worked so hard to reach in April 2008.  Then it returned in the lymph nodes under her arm and later in her bones.  Pain became her constant companion yet she did her best to remain connected to her work at NASA, be a ‘fully present’ mother and wife, and stay linked to the friends who gave her strength and support.

Each time Susan contacted me with questions about treatment, clinical trials, or worrisome symptoms, her questions would challenge me and send me searching journal articles to find current literature that provided guidance.  I felt frustrated that in the midst of so much breast cancer research and information there was so little evidence based data specific to IBC.  Susan shared my passion for research and was an outspoken advocate for more quality research to aid understanding of IBC and hopefully lead to improved treatments.  She spoke about this often in her blog.

Last spring Susan joined hundreds of breast cancer advocates at the National Breast Cancer Coalition’s Advocacy Training Conference in Crystal City, VA.  It was a joy to see her interacting with other IBCers, blogging friends, and being energized by the conference sessions.  In spite of her pain and fatigue she was anxious to attend all the sessions and joined a group of IBCers sharing a meal together (see photo).  We all hoped she would join us again this spring when we gather in Crystal City but instead, we’ll be remembering her and sharing stories of her amazing advocacy voice.

Through her blogging, Susan connected with an amazing number of people educating them about IBC, living with metastatic breast cancer, and the challenges facing women trying to balance home, family, and cancer.  Following her passing stories appeared in a variety of venues like iVillage,,, The Washington Post, the Planetary Society blog and numerous other blogs and media.  Such an outpouring of care and concern is a testament to Susan’s far reaching powerful voice.  The links below will take you to a representative few of these posts.

Susan Neibur speaking at a BlogHer conference

Janice D’Arcy of the Washington Post on Susan Niebur, the Toddler Planet hero, friend and mother

Joanne Bamberger speaks of What We Learned from the Blogger Who Inspired a Virtual “Love Fest”

I’m angry, sad, frustrated, and a dozen other emotions mixed together.  Once again this disease has taken a friend and nothing I could do was able to stop it.  A part of me wants to throw up my hands in frustration and devote my energies to a problem more easily solved…..but I can’t.  I hear the voices of friends like Julie, MP, Jessie, Gayle, Melody, Sandra, Stacy, Sarah……and Susan, reminding me that we must keep working for more research, education, better treatment options, and an end to IBC.