Count Me In!

I first learned of the Metastatic Breast Cancer Project in October of 2015. Last month I decided to complete their questionnaire to determine if I was eligible for their current study. Turns out, since my cancer has responded to a particular therapy for an extended period--at least I think this is why--I was accepted. The study is not intended to help me live longer, but to help those that follow me.

A year after its 2014 inception, the Metastatic Breast Cancer Project began collecting metastatic breast cancer patients’ DNA from across the United States of America. The project’s goal is to find understanding of the cellular complexities of metastatic breast cancer and to compile all the information gathered into one data base for all cancer researchers and the National Institutes of Health personnel to use in the understanding and in the advancement of treating this complex disease.

The Broad Institute of MIT and Harvard are funding and housing the research. Dana-Farber Cancer Institute and several advocacy groups are collaborating with this project. (Advocacy groups: MBC Alliance, MBCNetwork, Avon Association, LBBC Living Beyond BC, Young Survival Coalition, Inflammatory BC research Foundation, Share 40, the Male BC Coalition, Theresa’s Research Foundation, Triple Negative BC Foundation, IBC, A4BC, Metavivor, Metup, Tigerlilly foundation, Susan Komen, BCRF, Dr. Susan Love Research Foundation, BCSM, Hope Scarves)
 
The leader of this project are Nikhil Wagle, MD and the director is Corrie Painter, PhD.

If you are a metastatic breast cancer patient, you can go to the project’s website where you will be asked to fill out a questionnaire, MBC Project. From there—if you are eligible for the current study—you will be asked to give permission for the research team to collect your medical records and tumor samples—the DNA from those samples will be sequenced. Next a saliva kit will be sent to your home. You mail it back to them and the research team will capture the normal cells from this sample and conduct DNA sequencing on those cells. The researchers involved are hoping to discover specific DNA changes (mutations—alterations, deletions) and germline information (inherited) that are involved in metastases in hopes of leading to a better understanding of the disease variations so better treatments can be developed allowing for better control of this disease bringing longer lives to those affected.

Here is what you will find in your kit. The hardest part for me was producing the saliva which goes into a small tube and once closed mixes with a solution.

It took some effort but in 30 minutes my tube was shaken and packed into its box ready to be mailed.

The first set of patients to be studied are those presenting with de novo (stage IV at initial diagnosis) and extraordinary responders (those who have responded to a treatment for a longer than expected period of time—2 years + on one drug). Future studies will include young metastatic patients and those patients who do not respond to treatments (drug-resistant). 

If you have metastatic breast cancer and complete the first 16 questions about your cancer and the treatments you have received, you will get updates about the research as new information is found. And, if you are not eligible for the current studies, as the research expands you may be included in future studies.

Update:  My insurance denial has been overturned. Tomorrow I will receive my 57th infusion of TDM-1!