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

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Oct 16, 2018 10:56AM - edited Dec 19, 2018 08:05AM by moderators

Posted on: Oct 16, 2018 10:56AM - edited Dec 19, 2018 08:05AM by moderators

moderators wrote:

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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 10:14AM 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; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/1/2009 Other Radiation Therapy 7/5/2009 Whole breast: Breast, Lymph nodes Dx 5/14/2014, IDC, Both breasts, Stage IV, metastasized to bone/liver/other, 9/20 nodes, mets, ER+/PR+, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Dec 18, 2018 08:15PM 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 08:00AM - edited Feb 8, 2021 12:55PM by moderators

Thanks, Chemokaze, It was designed by the MBC Alliance, to which Breastcancer.org is a member.

To send a PM to the Mods: community.breastcancer.org/my/...

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