For ten months, I have been much better than the previous three years. I have more energy, I rarely feel unwell, my hair has returned and my Stage IV cancer has been stable. The improvements are due to Kadcyla (TDM1) a drug that was approved by the FDA early last year. A targeted treatment, it kills cancer cells while leaving healthy cells alone.

My former treatment, Abraxane, was not so kind. It left me exhausted, weak and feeling crappy most of the time. I needed extra medication to control diarrhea, I was hairless, and my mind was foggy and uncooperative when I wanted to concentrate. My life consisted of 12 hrs of sleep, sitting in the recliner watching TV, and forcing myself to get out of the house for anything a few times a week.

I'll take Kadcyla any time over the other available choices. But "much improved" does not mean "well." This may seem like a subtle difference to the healthy, but to me and other Stage IV cancer patients, it is still a big difference. Extremely appreciative of any improvement, we can play down the negatives. Like anyone after a brief illness, we take advantage of feeling better by loading our day with catching up on chores, errands, visiting and fun. Unlike those with brief illnesses, we often pay a price for doing so.

After months (years) of continual treatment, our physical selves will never recover fully. We may "look" better and feel better at times, but we will never be well.  This is difficult for family, friends, and acquaintances to understand. Those close to us may be tired of dealing with our illness, no matter how well they understand. Others are afraid to face the reality of terminal conditions, and cannot admit that we will never be well.

Improvements in metastatic cancer treatments are allowing us to live longer.  But the collateral damage from treatment leaves us with diminished quality of life. We acquire disabling conditions from chemotherapy that can be managed but will not be "cured." We live with anger, grieving our former healthy self some days. There is no way for us to "get over it" and "move on."

When you meet us, remember that while we may "look" OK, we are not. Remember to ask us how we are feeling, and listen to our answer. Remember that "better" is not "cured".  And remember that even after several years of survival, we may still need assistance and offers to help are much appreciated.

** Kate has been living with Stage IV IBC since April of 2009. She has had some form of progression at least once a year since then, including skin metastases last month. She is currently retired and enjoys spending time with her two children and two granddaughters. 

Part of banner display

Once again this year the Inflammatory Breast Cancer Research Foundation participated in C4YW Annual Conference for Young Women Affected by Breast Cancer. The conference is jointly presented by the Young Survival Coalition and Living Beyond Breast Cancer and supported by a variety of sponsors and over fifty exhibitors. 

A combination of group and breakout sessions focused on topics tailored specifically to meet the needs of young women. Conference attendees browsed the exhibit hall, spoke with exhibitors, picked up literature, and and some indulged in a massage, make-over, or pics in the photo booth. Plenary sessions brought everyone together for general topics while the breakout sessions dealt with issues like care giving, metastatic breast cancer, relationships, and reconstruction.

The Inflammatory Breast Cancer Research Foundation booth was staffed by Executive Director, Ginny Mason and Board member, Carol McWilliams. The new retractable banner, making its debut at this conference, grabbed people's attention and allowed us to start a conversation about IBC.  Surprisingly many people indicated they were familiar with IBC and often shared that they knew someone diagnosed with IBC.  Having exhibited at this conference in the past, it was good to see many young IBCers again who'd stopped by in previous years.  Others identified themselves as IBC survivors or IBC patients in the midst of treatment and were excited to learn that an organization was representing them in the research community.  It touched our hearts to talk with these young women and hear their stories.  They were excited to learn that we were are both long-term survivors, giving them hope to follow in our footsteps.

While it is heartbreaking to be reminded how many young women are facing a diagnosis of breast cancer it is also encouraging to see how these young women are enjoying life to the fullest.  Many attendees were accompanied by spouses or other family anxious to learn as much as they could to be supportive.  There was plenty of laughter and no doubt some tears as well.

Each year we weigh the pros and cons of spending the money to exhibit at this conference, since our focus is research.  Fortunately hotel costs were avoided and travel expenses kept to a minimum thanks to Carol's hospitality. As we talked to people, educated them about IBC and the work of the organization, it's clear that the time and money are well spent. In spite of our active presence on the internet since 1999, many people don't know "You don't have to have a lump to have breast cancer" or know that someone is acting on their behalf to improve diagnosis, treatment and outcome through quality research. 

Videos and text transcripts from the Alamo Breast Cancer Foundation's 16th Annual Patient Advocate Program are available for viewing. These multimedia presentations include: symposium overviews, expert question & answer sessions, and an educational breakfast session provided by the American Association of Cancer Research (AACR).

Breast cancer experts giving overviews and Q & A sessions include: Sharon Wilks, MD, FACP, Carol A. Lange, PhD, Julie Gralow, MD, Hyman Muss, MD, Douglas Yee, MD, Clifford A. Hudis, MD, Judy Garber, MD, MPH, Hope Rugo, MD, Steve Shak, MD, Virginia Kaklamani, MD, Richard Crownover, MD, PhD, Peter Ravdin, MD, PhD, Jenny C. Chang, MD, and Eric Winer, MD.

Link to videos. 

From the Cancer Support Community, the updated and redesigned booklet Frankly Speaking About Cancer: Treatments & Side Effects.

Written for people who are newly diagnosed or currently in treatment, it explores cancer treatment options, potential side effects associated with these treatments and tips to help manage side effects and communicate with your health care team. The booklet is free of charge, and you may download a PDF version or request a print copy.