So sorry for the silence! I've been working on many topics and issues, and you will hear about them soon. I also forgot to share this guest blog post I did back in March 2017. The Clinical Trials Arena post, Trial Results Create a Win for Patients and Companies, covers the reasons trial summaries need to make … Continue reading Trial results create a WIN for all!
Another good post about some of the new DCIS research that should give us better answers! If you want more information about DCIS, please join us at the SHARE DCIS webinar on 3/22/17 at noon Eastern: bit.ly/2hRYj8H
Where are the studies of women (like me) who have taken a less aggressive path for “low-risk” DCIS?
Until now — they didn’t exist.
Thanks to $13.4 million in funding from the Patient-Centered Outcomes Research Institute (PCORI), a long over-due clinical trial for DCIS has officially launched.
It’s called The COMET Study.
The goal is to learn if women with low-risk DCIS can avoid aggressive treatments and their physical and/or emotional side effects.
COMET stands for Comparison of Operative to Monitoring and Endocrine Therapy. It is a randomized prospective study that will enroll 1200 women at 100 cancer centers throughout the US.
My Role as a Patient Advocate
In 2016, I was invited to be one of four patient advocates on The COMET Study team.
We have enjoyed the opportunity to keep patient perspectives at the forefront of the study as well as this new website: www.dcisoptions.org
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Patients also want to be: Respected for their contributions to science and medical advances. Those contributions include samples from their bodies (biospecimens), information (data), experiences (input), and sometimes their very lives. Protected from harm and misuse of sensitive data about themselves, their family, and/or their culture or ethnicity. As long as we are respected and protected, … Continue reading Patients Want Their Data Shared
Donna Pinto wrote this great post after our meeting last week with other patient advocates, researchers and clinical trial staff to discuss the new PCORI DCIS COMET study that is in development. Thanks to Shelley Hwang, Ann Partridge, Alastair Thompson, and Jennifer Gierisch for including us in the Study Leadership Team!
More DCIS info here.
What a major milestone this is!
Laura Esserman and Shelley Hwang — named to the 2016TIME 100 Most Influential People in the World!
Why are These Doctors in My Top 10?
From the day I received a DCIS diagnosis and I was told of the very drastic and aggressive treatments, I began to investigate what intuitively felt seriously wrong. I was scared, confused and overwhelmed, but thankfully I soon discovered two breast surgeons leading a “controversial” call for change and discussing the problem of “over-treatment” of DCIS.
Laura Esserman and Shelley Hwang became my heroes. They were both boldly taking a stance — challenging the medical status quo when it came to DCIS and calling for radical change. I have been following and promoting their important messages for over six years.
Up until recently the mainstream media didn’t pay much attention to them. Celebrities with DCIS choosing double mastectomies…
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My blog guests this week are Amy Conn, Bruce Bloom, and Clare Thibodeaux from Cures Within Reach. Disclosure: I am a member of their Advisory Board, and think that testing older drugs for rare diseases is brilliant! The power of repurposing What if the latest treatment for cancer, diabetes or thousands of other unsolved diseases … Continue reading How to Solve Diseases with Existing Drugs
Well, it took me long enough to comment on this excellent serial report from @StevenBrill on @HuffingtonPost about drug company tactics. J&J/Janssen held back data about serious problems their drug caused while continuing to tout their “putting patients first” credo. Hmmm, does that mean “first to harm?” Thanks to https://chaoticpharmacology.com/ and @pharmagossip for kicking me in gear.
Disclosure: I started the series, but didn’t finish – too incredulous at the hubris and twisted perspective of the company. I will now.
Unfortunately, they aren’t the only company exhibiting this pattern. It’s also not the only example of their dubious practices. NASDAQ also wrote this article about another J&J product: “Johnson & Johnson Settling Cases Tied to Device That Spread Uterine Cancer.”
Ever take a bunch of facts and turn them into something readable? For real people? From many dry scientific journals? When sources disagree? Vehemently? That is exactly what UCSF researchers Thea Tlsty, PhD, Philippe Gascard, PhD, and I did. Here is what we learned in order to help make sense out of a major worry for women. … Continue reading 6 Ways to Turn Data into a Good Read