When I was diagnosed with inflammatory breast cancer (IBC) back in 1994, all chemotherapy treatments available, to me, were given by IV (intravenously) in the clinic or doctor's office.  As more and more treatment options become available, things are changing.  A number of newer chemotherapy options are available in oral formulations, usually as pills.  For patients this can be an advantage, allowing more mobility and less need for chunks of time at the clinic for infusions.  Unfortunately these drugs still come with a long list of side effects, in many cases, but patients I've talked to say they prefer oral medications to those by IV, that is.......until they get the bill.

In most cases IV chemotherapy treatment falls under an insurance plan's major medical benefit.  This leaves the patient with some sort of co-pay or a set office visit charge.  Because these new therapies are in pill form, many insurance carriers cover them like other oral  prescription medications.  This can come as a big shock to many patients who weren't expecting this difference in coverage.  The co-pay can be extremely high (since the cost of these treatments is usually high) and patients may not be able to fill the prescription or may opt to take less than the recommended dosage to save money.  A 2001 study by the Journal of Oncology Practice and American Journal of Managed Care reports that "10 percent of cancer patients failed to fill their initial prescriptions for oral anti-cancer drugs."

Currently 20 states require insurance companies to cover oral chemotherapy in the same way intravenous cancer treatments are covered.  Those states are: Washington, Oregon, Minnesota, Iowa, Nebraska, Colorado, Kansas, New Mexico, Texas, Louisiana, Illinois, Indiana, Virginia, Maryland, Delaware, New Jersey, Connecticut, Vermont, New York, and Hawaii.  Legislation has been introduced in the following states but not yet signed into law: California, Oklahoma, Missouri, Wisconsin, Michigan, Ohio, Pennsylvania, Tennessee, Massachusetts,  South Carolina, Georgia and Florida. This information is vitally important as treatment moves more and more in the direction of oral compounds. 

Be sure you are aware of your state's policy when discussing treatment options with your oncology provider.  There are organizations, like Patient Advocate Foundation, who provide assistance with co-pays should you need help.

The International Myeloma Foundation has taken on this cause. They've been working to ensure that FDA-approved, orally administered chemotherapy should be subject to the same insurance coverage as IV chemotherapy and the same sort of our of pocket expense.  To see their parity map:
http://myeloma.org/ArticlePage.action?articleId=3708 

Scientific research is a challenging task, especially when dealing with a disease like inflammatory breast cancer (IBC).  In these tough economic times researchers are scrambling for research funding, trying to complete ongoing projects when the money and staff have been cut, and still focus on research that will ultimately make a difference for patients in the end.

Over dinner with one such researcher, while attending a large conference, I expressed my frustration over the slow pace of real advances in the field of oncology, especially IBC.  She looked at me, sighed and said, "do you know how frustrated I am about those very same issues?"  She went on to talk about how she knows that patients are relying on her to find the "next great thing" that will prolong their lives or perhaps even cure their disease.  For those researchers who are able to see past the cell lines and mice, to the patients living with IBC, it's a constant and painful struggle to move good, useful research forward.

When representing the Inflammatory Breast Cancer Research Foundation in a variety of settings,  I have the opportunity to get to know many researchers and clinicians, talk to them about their research, and follow their progress over time.  One of those researchers, Gayathri Devi, PhD, of Duke Cancer Institute, contacted me recently to share two new publications highlighting work she and her colleagues have been doing.  IBC research is going on in a number of labs and institutions across the country and even around the world.  We'd like to share links to Gay's work at Duke so you know a bit more about some of the IBC research in progress. 

Editor's note: see "What's New on  the Website" column to the left for the 2 publications from Duke now on our IBC Research 2013 page. Dr. Devi is one of several authors for these publications 

 
"To love and honor until death do us part" is a phrase often used in marriage ceremonies. On my wedding day, October 17, 1981, death was not on my mind. If I had been asked about it, I would have said that I expected to outlive my new husband. As he is seven years older and takes high blood pressure medication, I figured it was a pretty safe bet that I would outlive him.

Fast forward to September, 2007. I was immersed in my career at a public university and part-time work as a group fitness instructor for the YMCA.  I went for my yearly mammogram a bit late that year. Due to extensive micro-calcifications, I was sent for a stereotactic biopsy and breast MRI. I was told that I had extensive Lobular Carcinoma in Situ, LCIS , in my left breast and it needed to be removed.

Due to a family history of breast cancer (both my mother and one of my sisters had ER+ breast cancer since my wedding), I chose a bilateral mastectomy with immediate TRAN flap reconstruction (skin sparing surgery using tissue from my abdominal region to construct new breasts). I recovered with flying colors and was happy with my reconstructed "girls" as well as my newly flat stomach. I had beat breast cancer to the punch line! I was told there was a small chance of chest wall disease, but not to worry about it as it was exceedingly rare after a double mastectomy.

Just two months later, I noticed a red crescent near my left arm pit that looked like chafing from my sports bra. As the redness spread over the next few weeks, I scheduled an appointment with my plastic surgeon, thinking that something was wrong with the transplanted tissue. My PCP put me on antibiotics, which did nothing. I had another breast MRI that showed skin thickening. The surgeon wanted me to see a dermatologist, but offered a punch biopsy in the meantime. Two days later he called with the news. I had Inflammatory Breast Cancer and needed to see an oncologist. On April 25, 2009, I was officially diagnosed with Stage IV, HER2+++ IBC. I had a bone metastasis to L4 on the right.

The internet told me that many women die within eighteen months of diagnosis and HER2+++ was an aggressive form of cancer.   Suddenly, 'til death do us part became real. I was an emotional wreck, in shock, angry and depressed.  I would awaken at 2:00 in tears, convinced I would never see future grandchildren, our sons' wedding or any other important family event.

Instead, I am alive nearly four years later. The journey has not been easy. Chemotherapy every three weeks has taken a toll on my body. I have digestive issues, moderate to severe fatigue, neuropathy in my toes, fingers and lips, and short term memory issues. I had a second mastectomy, radiation to the left chest, and stereotactic radiation to the L4 area. IBC then spread to my right chest with the addition of bumpy skin metastases.  I had one more progression to my bones, a right side rib. Still, I consider myself fortunate. I have responded to all my chemotherapies and I can still enjoy life. Grandchild number two will be born soon, and our son is in a stable relationship with a girl we adore.  My husband is soon to retire, and God willing, we will have a few more years to enjoy our life.  The FDA recently approved the new targeted combination drug, trastuzumab emtansine (TDM1) and I had my first infusion of it yesterday. "Death" has receded from my immediate consciousness, and I have several trips planned for the rest of 2013.  I have learned that no one is guaranteed tomorrow, and I intend to enjoy my life. 

Editor's note: Kate has shared a photo of her recent skin mets, prior to her TDM1 treatment. See it on the skin mets page, part of the Photos of IBC section of the web site.