Metastatic Breast Cancer Project - Great research

This is indeed a fabulous study! I'm familiar with it and have been too swamped to put together a detailed post about it, so kudos to Nel for starting this thread!

One of the main objectives of the study is to understand why some mbc patients respond exceptionally well to a given treatment and others do not. To this end, Dr. Nikhil Wagle, a Medical Oncologist and lead researcher at Dana Farber, is welcoming all mbc patients to complete a brief questionnaire so that he and his team can initially identify and concentrate on a subset of patients who can be classified as extraordinary responders, and those who were diagnosed with Stage IV from the start.

An excellent aspect of this research is that for the subset of patients who will initially be studied, the team will compare tumor tissue samples (with the patient's permission) to their saliva samples in order to identify specific mutations found in the tumor but not the saliva. Mutations found solely in the tumor can lead to important discoveries and the disease and response to treatment.

That said, I have corresponded with Dr. Wagle and his team about the importance of considering the tumor microenvironment, the microbiome (microorganisms that may be related to cancer), and lifestyle factors, and he is extremely receptive to taking these into account in addition to genetic mutations.

Corrie Painter, the Associate Director of the project, has initiated a FaceBook group which is communicating preliminary findings every step of the way. She's a delightful individual who is highly receptive to suggestions, as is Dr. Wagle. The Facebook Group is at: https://www.facebook.com/groups/870490796373760/

Patients can find out more about the project and fill out a questionnaire if they wish at: https://www.mbcproject.org/

To my mind, this is the most important mbc research project ever undertaken. Even if a patient merely completes the questionnaire, they will have contributed valuable information to this study.

In Feb. 2015 I'd conducted an informal survey of Exceptional Responders and Outliers, the results of which were shared with members of bco, the Inspirembc forum, Facebook, and the Metastatic Breast cancer Alliance. And just this week I'd sent a copy of the data along with a compilation of the survey results to the MBC Project Research Team.

Based upon an email from Dr. Wagle, who is leading the initiative, the criteria that the MBC Project is using to define extraordinary response is far broader than the one I used in my survey, so it's important not to use mine as a base. And de novo patients (who are diagnosed straight off with Stage IV bc) are also being studied by the MBC Project team. Over time, further phases of the study may be undertaken, so even if a patient signs up and is not asked for additional information in this first round, it's possible that they may be contacted for information during a subsequent phase.

Therefore, all mbc patients are welcome - and encouraged - to complete the simple questionnaire at https://www.mbcproject.org/

Bestbird, I don't know how you find the time to do all the research and writing your booklet but you help us all soooo much! Much gratitude...I've been meaning to ask what "bump" means?

I've been wondering what de novo patient means...now I know!!! And I'm one of them.

Am

artistatheart and RonnieKay, no thanks are needed! We all do what we can to help each other cope with this disease, and enable scientists to learn more so that eventually the treatments become more effective, less toxic, and ultimately lead to a cure!

RonnieKay, I believe (but cannot validate for "all" centers) that whenever a biopsy is done, at least a part is preserved whenever possible. Patients can ask their oncologists about this, especially regarding how to ascertain how much sample may currently be available.

I've signed up. Hope I haven't jinxed myself by counting myself among the exceptional responders!

Tina

Pajim, that's all I did. too. I surmised a positive response to the question about being on one medication two years or more may point to an exceptional responder. Perhaps that was too much of a leap.

Tina

The authorization form for this project is almost exactly the same as other trial forms I have signed with Dana Farber. The medical records should be used as an aggregate. And, well, I just have taken a leap of faith. The Broad Institute and Dana Farber are both highly regarded institutions, and I have just decided to trust them with this information. I think that this project, and other similar ones I am participating, have such great potential to increase the knowledge base for future treatments and maybe, just maybe, help with preventing future generations from this disease.

[VERY BLACK HUMOR WARNING] And, heck, I am not going to be here for all that much longer. How much damage can they do?

*susan*

I never received any consent form, either.

Received my second form yesterday. I lost the previous one, which arrived a few months ago, in a jumble of email. I am a bit concerned about the tissue sample business, in that I'm sure my lung biopsy for metastases yielded only smidgens (my technical term) that might be used to help me in the future. My primary breast tumors were biopsied long ago in 1995 and 1985. I think I'll call first to confirm that they won't take samples if there isn't enough material to leave some banked.

Tina

Gosh, lekker, thanks for the up-to-date article. It makes me feel good about having this information printed in the Wall Street Journal.

Thanks, Bestbird. You make a good point about the age of the last sample. My lung biopsy was more than four years ago.

I do want to help in this effort.

Tina

I just read and signed the consent forms. Gulp. Leap of faith is right. I know enough of technology to know any system can be hacked and information doesn't get any more personal than this. Then I thought about all of the young women living with mbc and those that may face it in the future and decided WTH.

Already a bit of data out of the project that was interesting to me. 300 of the ~1100 people who signed up so far had de novo mets. Certainly not a scientific sampling of everyone with mbc, but 30% is a long way from 6-10%.

Does anyone know if this is going to be ongoing in the sense that they will continue to follow us through future tx or more like a snapshot, where only the data collected now will be used in the research. I also wondered if they will continue to enroll people in the project or only use the data from those who have already signed up. Maybe that will depend on funding?