Metastatic Breast Cancer Project - Great research

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  • Lindalou
    Lindalou Member Posts: 647
    edited December 2016

    This is live today, December 7th, 2016

    This Wednesday (December 7) at 5pm Central, the MBCProject team will be presenting live from the San Antonio Breast Cancer Symposium! Join us to watch and ask questions. A copy of our presentation, featuring some new project updates, is available now here: https://goo.gl/moXqOk.

    Tune in to our facebook page at https://www.facebook.com/metastaticbreastcancerproject to watch live, or view the recording later.

    FACEBOOK: https://www.facebook.com/metastaticbreastcancerproject

    TWITTER: https://twitter.com/mbc_project

    MBCProject BLOG: http://mbc-project.blogspot.com
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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited October 2017

    Have to admit I haven't been keeping up with the MBC Project happenings in a while, but thought I'd bump this thread with the latest: "We are preparing to release the first 103 samples from 78 patients in the MBCproject.org. We aim to release clinically annotated genomic data in 6 month intervals. Many thanks to all patients who are part of the project, and those who have helped us prepare for this first data release."

    If you're interested in participating, click the link above, or get info at their Facebook/Twitter pages or blog:

    FACEBOOK:https://www.facebook.com/metastaticbreastcancerproject
    TWITTER: https://twitter.com/mbc_project
    MBCProject BLOG: http://mbc-project.blogspot.com/:

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  • Lindalou
    Lindalou Member Posts: 647
    edited October 2017

    Thanks Bjsmiller. I have been involved with the MBC project since the beginning and look forward to Dr. Wagle's data this week.

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited October 2017

    Lindalou, I've been involved from the start, too, and think it's very exciting. I think this project may have helped to propel what seems to be a lot more research coming for MBC. I'm also looking forward to seeing their first data.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited October 2017

    I read this for the first time today. I thought it was just for those who fit into the four categories. I didn't have an exceptional response to treatment, I was not DX w de novo MBC, I'm not young and I'm Caucasian.

    So should I sign up? I'd love to be a part of this research. It sounds amazing.

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  • Lindalou
    Lindalou Member Posts: 647
    edited October 2017

    Yes you can sign up! Go to the web site and fill out the information and they will contact you. The team at Broad Institute is amazing. I will be involved in another metastatic research study and when I have more info on that, I will post here.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited October 2017

    After rethinking my treatment, I did have an exceptional response to the local treatment. I had y90 radioemboliztion to the eight liver mets. After only three months, none of the mets were showing any uptake on my PET scan. I'm on Ibrance and femara since January 5th, 2017, my lung and chest mets did show a response on my August scan, just not exceptional one.

    So, does exceptional response to a local treatment count?

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited October 2017

    Thanks, Lindalu.

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  • Kimchee
    Kimchee Member Posts: 105
    edited October 2017

    I just want to scream !! We need a cure soon !!!

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited November 2017

    I submitted my consent to be in this research today. Incessant sure they would be interested in my case. Evidently, they are.

    Is there going to be some results of the research released soon?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2017

    Grannax2, here you go. This info just came out a day or two ago. https://www.mbcproject.org/data-release

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited November 2017

    I just got my boxes in the mail! Evidently, they want saliva and blood so I'll take it with me to my MO appt on Thursday to have my blood drawn.

    I think I'll ask MO what testing she likes to do. I think she told me Foundation One. I haven't had any done yet that might help find mutations, etc. To help decide future TX.

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  • Lindalou
    Lindalou Member Posts: 647
    edited November 2017

    Grannax, Glad you got the chance to send in your saliva and blood draw is really easy. I just sent in my tumor sample for Foundation One but am finding out it may be too old, as that sample was from my original diagnosis 10 years ago.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited November 2017

    My MO ordered foundation one testing. I've heard it only takes 2weeks to get results. I also mailed all the MBC project samples in on Thursday. My MO office was very helpful with all that. She did say if I don't have enough of my tumor we might do another liver BX. I'm doing all this to be prepared for when I have progression. My August scan looked good, waiting to see what my January scan will say.

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2018

    Bump. This thread's been quiet for some time. Hey, I read on a FB site some ladies had contributed blood samples for the project, but I hadn't seen any requests for blood. Have any of you contributed blood samples and did they contact you directly? Just curious.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2018

    Bliss,

    The project sent me a form via email, requesting a blood sample, then sent the sample kit quite some time after I consented. I will take it along on my next blood draw at my oncologist's office.

    Tina


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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited June 2018

    Hi Bliss, I also received an email like Tina's. I submitted my blood last month and received a follow-up email. That email confirmed their receipt of the sample and also said they would be contacting my doctors for updated records. You will probably receive an email soon. They are probably staggering them so they are not overwhelmed with responses.

    Lynne

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2018

    Thanks Tina and Lynne. Maybe I will receive something soon, but a FB friend suggested I contact Corrie. I searched my email and I'm getting emails from them, but nothing about a blood sample, so I think I'll wait a bit.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited June 2018

    Yes, when I heard about it and contacted them, about eight months ago, it seems there were a lot of e mails etc.. several forms to fill out. Consent for all my docs from forever, so they request tumor samples. Then I got the kit in the mail. Inside it were the instructions and vial for saliva and blood. I took it with me to my next mo visit. They did the draw and everything then mailed it for me..

    I assume my samples are being used now. But I have not read much about any new research from their study.

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited September 2018

    Yikes! I was searching my email today, and I don't know how I missed the one about the blood draw I got in May, but I did miss it! Searched back then, too. Oh well.

    Only found it because I got an email recently from Dr. Wagle about completing Follow Up Survey #1 which I did do. I then emailed him with my apologies for missing the blood draw email in May and told him I'm still willing to do it if needed.

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