We MBC patients count a great deal as we pertain to medical research. Welcome the guinea pigs. Long live the lab rats.
The MBC Project – Mbcproject.org – which asks us lifers to contribute our genetic material including a slice of biopsy material. Our genetic stuff will be shared with researchers “at the Broad Institute of MIT and Harvard, in collaboration with Dana-Farber Cancer Institute, Harvard Medical School, and a growing coalition of non-profit advocacy partners,” to dive deeper into our currently incurable form of cancer.
My litmus test, well, my opinion anyway, is why not share what I can to help anyone who comes after me not to suffer at the fate of the three current and only widely available treatment modalities for MBC. You know – chemotherapy, surgery, radiation therapy. Good lord, barbarism. Very profitable barbarism.
While I used to worry about my online security and privacy if I engaged in such tests and surveys – especially of my own physicality, my future would change that point of view in a way anyone could not have predicted. I suppose in some ways I gave up my privacy the day of my diagnosis. No longer could I remain anonymous. No longer some generic marketer hiding behind a vague business strategy career overview on LinkedIn and my own, as well as corporate, business focused blog posts.
I became part of a community of the dying few too many with stage IV cancer.
Post diagnosis, my online life exponentially grew from occasional blog posts about marketing with a pithy, humorous voice, to a robustly public online presence with a pithy, humorous voice. My individuality showed a little more than I thought prior to attempting to turn up the volume to reach outwardly to receive help from others and to reach inwardly to hopefully assist others in need of my experiences to help guide them through theirs.
I recall the same day of my diagnosis, after we assessed the earthquake damage, I turned to Craig and told him I’d participate in as many clinical trials as possible since it was incumbent upon me. Having tried to find some to participate in wasn’t as easy as I’d hoped, and not all were appropriate for my health. There just aren’t many clinical trials for which I fit the bill. However, there’s a few good ways to share information to help researchers to get a better handle on who has what and what we take and how it’s working and our lives and how psychosocial factors can effect our health.
Another such was run by Dr. Susan Love and looked at the collateral damage of MBC. Bravo as usual Dr. Love. She’s not only written the Bible, “Dr. Susan Love’s Breast Book,” available on Amazon, or chances are good in your local library has multiple copies available to check out for free, or in your local new or used bookstore, too. It’s with impatience that I await the results of that study, and I’ll let you know as soon as I know when the findings are made available.
You can delve into her information rich site and also take part in the HOW – health of women – study here: https://www.drsusanloveresearch.org/how-study/my-overview
In the mean time, do some diving around. Find some place so you can reach out for support and participate in research specific to MBC:
Metastatic Breast Cancer Network – MBCN.org
MBC Alliance – http://www.keepmeinthepicture.com/mbc-alliance/
Advanced Breast Cancer (full o’ great resources – http://www.advancedbc.org/
And a portal to give you a roundup of all sites cancer related http://www.mbcinfocenter.com