My Paper with the MBCA re: Atypical Responders
Greetings,
For years I have wondered why Exceptional Responders, Rapid Progressors, and Exceptional Survivors have not received as much attention as warranted, and I have also been perplexed as to why most studies that are underway focus solely on tumor genomics.
In 2015 I proposed to the Metastatic Breast Cancer Alliance (MBCA) that these three groups of mbc patients should be studied, and that these studies take additional factors into account such factors as lifestyle, Complimentary and Integrative Medicine (CIM), chemo sensitivity and resistance, the host and tumor microenvironments, co-morbidities, and lifestyle.
The MBCA was highly receptive, and for the past 2 1/2 years we have been working together on compiling a paper to this effect. I am glad to announce that the "Atypical Responders Analysis" has been published in Oct. 2017.
My hope is that members of the research and clinical communities will take this subject matter to heart, and that the results of these efforts will lead to enhanced precision medicine and greater success in treating all patients with mbc.
Below is a brief synopsis with a link to the paper in case you may be interested in reading it!
With best wishes.
Synopsis:
"Researchers in clinical oncology and other domains generally focus on results encompassing a statistical mean with little attention to patients undergoing investigational or standard therapies who respond considerably better or worse than the norm. An enormous opportunity exists to explore the reasons underlying an unusual ("atypical") response, which would increase understanding of the mechanisms involved in cancer progression and treatment resistance, accelerate biomarker identification, and improve personalized medicine by allowing clinicians to prospectively select optimal treatments while avoiding therapies that would otherwise prove ineffective."
"Understanding the reasons underlying atypical responses and exceptional survival is critical to advancing the success of personalized medicine. Therefore, the Metastatic Breast Cancer Alliance calls for:
1.Unified categories of, and criteria for, exceptional responders, rapid progressors, and exceptional survivors
2.Enhancing clinical trial design to study exceptional responders and rapid progressors relative to treatment outcomes. Exceptional survivors who enroll in clinical trials can be readily identified by the date of their MBC diagnosis, and specific methodologies to study these patients are needed
3.Funding studies that expand upon the role of genetics in atypical responses by integrating other factors including CIM, co-morbidities, and the entire patient, without limiting the study to genetics
4.Sharing standardized, de-identified patient information that is generated from these studies in a secure centralized data repository that is accessible to authorized scientists"
"This paper – from the same authors as the peer-reviewed opinion piece which appeared in the journal npj Breast Cancer on March 16, 2017 – summarizes published studies examining the reasons for an atypical response, new research initiatives that are exploring this topic, the strengths and limitations of these endeavors, and a call-to-action for strategic direction."
Link to Paper: http://media.mbcalliance.org/MBCA_Atypical-Responders-Analysis_October2017.pdf
Comments
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http://media.mbcalliance.org/MBCA_Atypical-Responders-Analysis_October2017.pdf
Pardon the intrusion but I wanted to make the link “live”. Fascinating work!
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Nice work, Bestbird! Great article. This is certainly an area where more research would be very valuable.
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awesome! The saw the piece through FB but didn't connect the dots. Thank you for dedicating your time to this- may it focus future research
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Thanks so much for this, Bestbird!!
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What is your sense of whether they will follow up on this. I am totally with you on the excessive focus on genetics but the people who make the diagnostics and the meds want the focus on that aspect.
>Z<
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zarovka, that is a good question! I do know that there will be an Exceptional Survivor Study (more to come; it is still in IRB) that will take lifestyle and other factors into account. And the MBCA will be specially sharing the paper with Dr. Wagle and Corrie Painter of the MBC Project. That said, most researchers appear to be solely focused on genetic mutations, and the paper espouses a broader mindset which requires a paradigm shift.
Some of the key points in the paper are already underway, such as data sharing (although there is still no single main shared data platform). When we began writing the paper in 2015, there was nothing really being done in this regard. That is beginning to change, thankfully.
Are you still in Japan? I hope your treatment is going well!
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Really excited about your work!!! Thank you!!
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