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Topic: MBC Connect patient registry. Important. Check it out.

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Oct 16, 2018 01:56PM - edited Dec 19, 2018 11:05AM by Moderators

Moderators wrote:


Let's accelerate metastatic breast cancer research together.

MBC Connect is an interactive, web and mobile-friendly patient registry, where you can share information about your MBC disease history, experiences, and quality of life. Learn more and Join the Registry here: MBC Connect

Note: Available in English and Spanish

MBC Connect is an initiative led by the MBC Alliance. The MBC Alliance was formed in 2013 and is the largest coalition in the U.S. focused on metastatic breast cancer. The membership comprises nonprofit organizations, pharmaceutical and biotech companies, and individual patient advocates or patients living with MBC.

info@mbcconnect.org or call (646) 497-2695

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Oct 27, 2018 01:14PM GG27 wrote:

US only, Canadians need not apply. :(

Dx 10/2008, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 3/9 nodes, mets, ER+/PR+, HER2- Surgery 1/8/2009 Lymph node removal; Mastectomy: Left, Right Chemotherapy 2/1/2009 Other Radiation Therapy 7/5/2009 Whole-breast: Breast, Lymph nodes Hormonal Therapy 9/6/2009 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 5/14/2014, IDC, Both breasts, Stage IV, metastasized to bone, 9/20 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 5/19/2014 Arimidex (anastrozole) Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Dec 18, 2018 11:15PM Chemokaze wrote:

I cannot find someone to contact on the MBC Connect page, but maybe I’m missing something, but the survey only asks when your primary breast cancer was diagnosed. They don’t ask for the date when MBC was diagnosed, so when you look atthe pie charts/data analysis at the end of all the surveys, the length of time known for MBC is incorrect!

10/2018: NEAD; 7/2018: Onward to Verzenio, Zometa, Faslodex, & CyberKnife to single met to L4 spine. Dx 9/1996, IDC, Left, Stage IB, Grade 3, 0/21 nodes, ER+/PR+ Dx 5/2016, IDC, Right, Stage IIIC, Grade 2, 14/21 nodes, ER+/PR+, HER2- Dx 6/2018, Stage IV, metastasized to bone
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Dec 19, 2018 11:00AM Moderators wrote:

Thanks, Chemokaze, It was designed by the MBC Alliance, to which Breastcancer.org is a member. Either we can pass that along, or you can reach out to them directly: info@mbcconnect.org or call (646) 497-2695

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