LIVESTRONG:

What started as IDC (Infiltrating Ductal Carcinoma) in 2011, then turned into CHF (Congestive Heart Failure) in 2013, probably partially caused by chemotherapy along with a genetic pre-disposition. Here we are now in March 2016 and I am newly diagnosed with Stage IV breast cancer in the left breast and liver (LMBC - liver metastasized breast cancer).


So the focus has shifted yet again, BUT... I continue to THANK YOU for your prayers, love & support. I receive them with open & loving arms. My wish is that I will gain strength from you, will provide helpful information and strength to others & will help to strip away the fears we each experience.


I am strong. I am loved. I am healthy. I WILL SURVIVE!

Have you or your loved one had their annual mammogram? PLEASE, don't put it off. Speaking from experience, I highly recommend monthly self exam as well. And if you are now cancer free of breast cancer, do everything you can to insist that your doctors follow up with an occasional PET Scan and labs for tumor markers.

WARNING:
Contents may be uplifting, sad, funny, scary, downright depressing ~ THAT IS CANCER .... at it's best, at its worst.

PLEASE ~ Feel free to share this blog with anyone who is interested to learn about my journey. While I welcome their support, I hope that by sharing this experience freely to the universe I may help to support others by breaking down some of the barriers and fear associated with breast cancer and the treatment.

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Monday, August 1, 2016

Metastatic Breast Cancer Project

I mentioned in a previous post that I signed up for the Metastatic Breast Cancer Project (mbcproject.org).  I recently received an email as one of over 2,400 women and men with metastatic breast cancer who have signed up for the MBCproject over the past 9 months.  They have been amazed by the tremendous outpouring of support.

This post shared details on the progress they’ve made to date, and what to expect from the MBCproject over the next few months.  The project continues to grow, and I am excited to share the next steps with you.

The Numbers 

In the 9 months since the project has launched, over 2,400 have come to their website at mbcproject.org and clicked “Count me in!” to enroll in the project -- an incredible response! By now, most of those should have received an email with a link to the online consent form – so far, more than 1,300 have signed the consent form (Debbie has) giving them permission to obtain and analyze copies of medical records, portions of leftover tumor samples, and saliva.


Saliva kits have been sent to everyone who has signed the consent form (for US and Canada participants for now — they hope to add more countries in the future). To date, more than 650 saliva kits have been returned (including Debbie's). And, they are beginning to request more medical records and tumor  samples – they have already received hundreds of records and tumor samples over the past few months.

What has been learned so far?
Of the 2,400 people who have enrolled in the MBCproject, more than 95% answered the 16-question survey about cancer and treatments.  This information is hugely informative.  Here’s what has been learned from this survey:

  • Average age of those who have signed up: 52 (ranging from 24 to 91)
  • Average age at diagnosis: 45
  • Average age at time of metastatic diagnosis: 49
  • Average time between initial diagnosis and metastatic diagnosis: 4 years
  • Number of patients diagnosed with metastatic disease from onset (“de novo” metastatic disease): >800
  • Number of patients who have been alive with metastatic diagnosis for 10 years or longer: >160

This is really important information for metastatic breast cancer research — and helps frame how we are going to ask and answer key biological questions on this disease.

And this is just the very beginning of what is being learned. They've also learned a great deal about cancer types and treatments — including which treatments worked well and which didn’t.  They've heard many stories, about what’s important for patients to learn about, and even about issues that we didn’t think to ask about in the first place.

Much of this information has been shared online on Twitter (@mbc_project), on the Facebook page (https://www.facebook.com/The-Metastatic-Breast-Cancer-Project-852059048224675/), and on the blog at http://mbc-project.blogspot.com.  There is lots more to learn from your responses - and MBCProject will continue to post what is learned on their blog as well as on Twitter and Facebook.

MBCProject in the news

Many people are taking notice of the project, and are inspired by the partnership with you and patient advocates. They’ve been excited to have been featured in a number of recent press articles and blog posts, including two articles in The Wall Street Journal (Researchers Take Aim at Metastatic Breast Cancer and New Studies Rely on the Internet for Help Treating Cancer Patients), The New York Times Magazine (Learning from the Lazarus Effect), Fast Company (#Cancer: Researchers are conducting huge studies using Twitter, Facebook) and the Broad Institute blog (Power to the Patients). In addition to this, the White House has listed MBCProject as one of 40 initiatives that will accelerate precision medicine (Obama Administration Announces Key Actions to Accelerate Precision Medicine Initiative).

The project was recently presented at the American Society of Clinical Oncology (ASCO) Annual Meeting, where it was extremely well received by both the oncology community and press. You can find a copy of the ASCO poster, as well as slides and video from the press conference on the blog at http://mbc-project.blogspot.com/2016/07/mbcproject-updates.html.

In March, some were able to participate in person to discuss the project, and are featured in the video. If you haven’t yet seen it, please watch and share this video about why the MBCProject is so important to patients and researchers alike (The Metastatic Breast Cancer Project).

What are the next steps?
In the coming months, they’ll continue to collect medical records and tumor samples from everyone who has signed the online consent form and sent in their saliva kit.  Genomic sequencing studies on tumor tissue and saliva samples are already underway, and they hope to have their first data analyzed by the end of the year.

MBCProject is in the process of bringing on additional advocacy partners to build partnerships and expand their reach, and will continue to work with current partners and participants to continue to grow. Advocacy partners include The Metastatic Breast Cancer Network, The Metastatic Breast Cancer Alliance, Avon Foundation, Living Beyond Breast Cancer , Inflammatory Breast Cancer Research Foundation, Young Survival Coalition , SHARE , Male Breast Cancer Coalition , Theresa's Research Foundation, Triple Negative Breast Cancer Foundation, The IBC Network Foundation, Advocates 4 Breast Cancer , METAvivor, MET UP, Tigerlily Foundation, and several more collaborations that are in the works. The success of the project is because of the combined efforts with all, patient-participants, and with advocacy partners, and are continuing to strengthen those relationships.

What can you do to help?
Here are 3 things you can do to help:

1) If you have not yet signed the consent form and if you are willing to share copies of your medical records, portions of your leftover tumor samples, and your saliva, please sign the online consent form. (If you need to find the email, the subject is “Next step for the MBCproject: Sign the consent form”.  If you’ve already signed the consent form, you should have an email with the subject “Thank you for providing your consent”).  If you can’t find the link to your consent form, email MBCProject at info@mbcproject.org and they will send you a new one.

2) If you’ve already signed the consent form and have received your saliva kit (for people living in the US or Canada), please send in your saliva kit.  If you lost your kit or need a replacement, email them at info@mbcproject.org and they will send you a new one.

3) Help spread the word. The MBCProject is a patient-driven research movement. Biggest enrollment days have been a direct result of outreach to other patients.  The project will continue to grow through patients like you reaching out to other patients. If you’d like to help spread the word, please let other patients with metastatic breast cancer know about mbcproject.org by posting on social media or simply telling others in your community.   Many of you have also asked how you can volunteer to further engage patients and expand the project -- if you’d like to do more, please email them at mbcvolunteers@broadinstitute.org.

For more information
They hope to provide quarterly updates through email, and would love feedback on what aspects of the project you are interested in learning more about. In the meantime, you can find more frequent updates on the blog, twitter feed, and facebook page.  You can also find additional information about the project on our FAQ page (https://www.mbcproject.org/faq).

If you have any questions, feedback, or ideas for the project, please feel free to reach out to MBCProject at info@mbcproject.org or call 617-800-1622.

Why not check out this program now!



THANK YOU for continuing to keep me in your thoughts & prayers.


Die cancer, DIE. You are messing with the wrong woman!!

Debbie... aka the cancer FIGHTER, AND Cardiomyopathy warrior!!!
B E L I E V E

• I AM STRONG • I AM HEALTHY • I AM LOVED •
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