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Advocates fighting for the lives of those with metastatic disease

BY KATHY LATOUR | DECEMBER 6, 2012

When CJ Corneliussen-James retired from the Air Force in 2003 after 24 years she was a senior intelligence officer in the Defense Prisoner of War/Missing Personnel Office where she worked to resolve the casees of missing servicemen and women still unaccounted for from the Vietnam and first Gulf Wars.

A year later, Lt. Col. Corneliussen-James was diagnosed with stage 2 breast cancer, which metastasized to her lung in 2006. After surgery that removed one lobe of her lung, CJ has been No Evidence of Disease (NED), but she knows it's a matter of time before she will face cancer again.

When she discovered the existing arsenal against metastatic breast cancer (MBC) was significantly out of proportion to the loss of life, she took action. She went on the road with her message: 30% of women who are diagnosed with early stage breast cancer become metastatic, but only 2% of funds go to metastatic disease research.

To raise more funds for research, CJ and three friends from the metastatic support group she founded, created METAvivor in 2009. Since then the nonprofit with its volunteer board has raised and awarded more than $300,000 to researchers working on metastatic disease. In 2011 they began their 30% for 30% campaign -- advocating that 30% of all cancer research funds and 30% of support activities be devoted to MBC research.

CJ is one of the Alamo Breast Cancer Foundation advocates at this year's SABCS meeting. She and METAvivor vice president Kelly Lange are eagerly following the research at SABCS hoping to see new approaches to MBC. Lange was diagnosed with Stage 1 breast cancer in 1995 at age 32. By 2000 she had multiple regional lymph nodes involved and skin metastasis on her neck. Lange, a "super responder" to Herceptin and has watched as the drug has literally eliminated the skin metastases on her neck.

"We fund grants that will ultimately transition metastatic disease from a terminal illness to a controlled illness with a good quality of life," CJ says. "We fund the start up ideas, the risky out-of-the-box ideas ... the ones that could make a significant difference. These research proposals don't stand a chance of geting picked up unless we do this."

She says that although the trials funded thus far have yielded positive results, they aren't afraid to fund trials that end up negative because that gets all the researchers off that track. The group works with a scientific advisory board of physicians and researchers and has become known as the only organization that exclusively funds metastatic research.

Lange says that since METAvivor is an all volunteer organization, they can put 100 % of fundraiser profit into research grants. "This allows us to maximize the amount of funds going into MBC research. We keep our organization afloat by applying for grants to sustain our operations."

If you want to get CJ riled just tell her how much progress has been made, which is something she often hears.

"It's just not true," she says. "Women and men with metastatic disease are still dying in large numbers and we need to fund the research that can change that fact."

For more information on to their webpage.

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COMMENTS

I think I've found a new hero!!
- Posted by Greg Hoffmann 12/9/12 7:53 AM

Speaking as a woman with metastatic breast cancer (liver) these women are doing good work. I hope their voice is heard and more dollars flow their way. The ONLY people who die of breast cancer and women like me, whose cancer spread past the breast. And, guess what, ladies and gentlemen? My cancer was found early, Stage II. So, why did mine spread? Nobody knows. Why not? Not enough research dollars. Think before you pink and do not funnel more money into "awareness." We are aware and being aware does not stop a cancer that wants to spread, even at an early stage. That is why 30% go on to have mets. This kind of research is our only hope.
- Posted by ButDoctorIHatePink 12/9/12 3:15 PM

Speaking as a woman with metastatic breast cancer (liver) these women are doing good work. I hope their voice is heard and more dollars flow their way. The ONLY people who die of breast cancer and women like me, whose cancer spread past the breast. And, guess what, ladies and gentlemen? My cancer was found early, Stage II. So, why did mine spread? Nobody knows. Why not? Not enough research dollars. Think before you pink and do not funnel more money into "awareness." We are aware and being aware does not stop a cancer that wants to spread, even at an early stage. That is why 30% go on to have mets. This kind of research is our only hope.
- Posted by ButDoctorIHatePink 12/9/12 3:15 PM

Speaking as a woman with metastatic breast cancer (bones - spine)I appreciate the efforts of METAvivor. My breast cancer was also found early Stage I with no lymph involvement - everyone was surprised that I had MBC. Really glad someone cares enough to help look into this area that has been it seems ignored. We definitely need to get more $s into research to find our why & how breast cancer starts and why it mets to other areas and I agree less on awareness - we all know "pink" and about breast cancer - now let's get to why, how and how to get rid of it by supporting more research in this area. Thank you METAvivor!
- Posted by Mary Purdy 12/13/12 6:03 PM

I was diagnosed with Stage II breast cancer in May 2011. Lumpectomy and Contura brachytherapy radiation treatments, with Arimidex daily. Just found out last month that my cancer had spread into my entire spine! Have just ended my first 2-week round of Xeloda and have developed mouth sores, nausea, fatigue, and diarrhea daily. I am an RN and have had to quit work due to all this! Need someone to help all of us with mets from breast cancer!
- Posted by Madeline Leyda 12/15/12 3:43 AM

I just lost my best friend a week prior to Thanksgiving!
Patty was diagnosed Labor Day 2011 with Invasive Ductile Carcinoma, and after a lumpectomy, chemo, double mastectomy, radiation - we thought she was all set this past fall, just reconstruction scheduled for Jan/Feb 2013. We were in for a BIG surprise when we learned it had spread over the year of treatment, by Labor Day 2012 it had metastasized to her chest wall, lung, bone in shoulder, and the lymph nodes in Patty's air way. I can't believe that while in treatment this spreading could have been overlooked or missed! In the engineering field, we test to check to see & confirm progress. I'm amazed that somebody with TNBC and 44 years of age when diagnosed would not have been observed closer! When she passed away she was having difficulty moving due to her lungs not functioning & converting air to oxygen, due to the cancer that had spread to her lungs! Patty's twins just turned 7 this past week!
This is absolutely amazing to me that we have this kind of death in the USA today!
- Posted by Csilla 12/16/12 6:11 AM

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