The metastatic breast cancer alliance
 

On Facebook.

Led by a woman (Corrie Painter), who is a mestastatic bc patient and doctor with a team -- seeking to increase research for all of us.

I joined.

It's a simple form, sharing your information, to go into a data base. I no longer have tissue samples, but still could join.

The Metastatic Breast Cancer Project is a research study being launched and funded by the
Broad Institute of MIT and Harvard, a nonprofit academic research institution whose mission
is to dramatically accelerate the understanding and treatment of disease. The study is being
conducted in collaboration with Dana-Farber Cancer Institute as well as our advocacy
partners. With this project, we are exploring a new approach to genomics research in which
we partner directly with patients with metastatic breast cancer in order to speed important
discoveries.

If you have any questions about this study, please reach out
to us at info@mbcproject.org or 617-800-1622.

Advocating for ourselves, the patients. I am all for that!

It is brand new and they have about 800 members already.

MBC -- THE METASTATIC BREAST CANCER ALLIANCE.

A new Broad Institute / Dana-Farber research initiative to partner directly with patients to accelerate discoveries in metastatic breast cancer

http://MBCproject.org/

https://www.mbcproject.org/Metastati...physicians.pdf


Andi

Re: The metastatic breast cancer alliance
 

I submitted a couple of weeks ago. They are looking for a specific subset of people (de novo or exceptional longevity---Andii you qualify :) ) for sample submissions. I look forward to falling into that exceptional longevity category someday.

Re: The metastatic breast cancer alliance
 

I nominate Tracy Arcari to become de novo -- a longterm met bc survivor.

I hadn't recalled that.

But -- there are going to do further studies on other groups and you may qualify for that.

Additional cohorts will be added in the future, including young
women with metastatic breast cancer and patients with drug-resistant metastatic breast
cancer. This project seeks to establish a patient-researcher partnership to accelerate genomic
discoveries and improve outcomes in metastatic breast cancer, and may ultimately serve as a
means to build a new clinical and translational research model for all patients with cancer

Re: The metastatic breast cancer alliance
 

Done!
Michka

Re: The metastatic breast cancer alliance
 

Welcome, Mishka!

You could follow on Facebook. If you decide to join.

I had to have my grandson do it for me. Swore I'd just lurk.

Find the most interesting posts! Get to see what my kids and grandkids are up to. And pp I know. Or come to know.

Swore I'd never post anything political.

Well, I swear I will never go to Instagram or Twitter!!!!!

Hugs,
Andi

Re: The metastatic breast cancer alliance
 

Andi,

Thanks for pointing out the MBCProject. I filled out the form about a month ago.

I believe Corrie Painter is an angiosarcoma survivor, and that the lump was found in her breast. The cancer is very aggressive and has a strong propensity to metastasize. She was at SABCS.

http://www.cancerresearch.org/our-st...ie-ann-painter

My eye caught the title of your post: The Metastatic Breast Cancer Alliance, because THERE IS such an alliance, which is a fabulous organization. MBCA also has a great website. Check out the clinical trials section and play with the bubbles.

http://www.mbcalliance.org

Best,

Joan

Re: The metastatic breast cancer alliance
 

Thank you, Joan!

Yes, Corrie has all that you say.

And yes, she was in San Antonio!!!!

Who wasn't????

Every onc in America anyway. I note that time period in Dec. for yrs, cause I can't count on getting any immediate help if need be. No joke.

Having my scans tomorrow. Was thinking to make my Dec. scans further from Christmas craziness, but SABCS -- so I moved to this Tues.

Hoping for stable. Expecting stable.

I will check out all you say, Joan.

Wonderful.

We need to keep one another informed. We must keep sharing! Sharing is caring.

Don't just lurk. Don't think what you have to say isn't really interesting.

I swear -- it is always interesting. Adds to our knowledge knowing one another's experiences. Makes us smarter and therefore more empowered!!

Re: The metastatic breast cancer alliance
 

TOGETHER WE ARE STRONGER THAN THE DISEASE ...!!!!!!!!!!!!!!!!


http://www.mbcalliance.org/data-visualization/



Joan, From your link I somehow found this with the bubbles you speak of.


All this is better for all of us...!!!

Re: The metastatic breast cancer alliance
 

I'm in there as well - not sure they intended to have people from "north of the border", but I did fill in the form, and I'm "de novo"... It seems to make so much sense - to finally at least collect all those data - who knows what gems are in there that we don't even know about?

Re: The metastatic breast cancer alliance
 

I wholeheartedly agree Annett.

Many yrs ago when visiting my dghtr in Bev Hills I had an appointment w/Dennis Slamon at UCLA. He asked me to participate in a study and I happily said yes.

they did phone interviews ((hours) and written questions and mouth swabs, carefully packaged and timed.

I was to get the results, as requested.

Never got any results.

Re: The metastatic breast cancer alliance
 

Andi
I just joined
Eileen

Re: The metastatic breast cancer alliance
 

I hope more here will go to the site below and check it out. It seems the study is up and ready to run now.

https://www.mbcproject.org/

Re: The metastatic breast cancer alliance
 

Thanks Andi. This came up on an Aussie based Facebook group today and I am interested. Need to see whether they are interested in us, the down under metsters.... Could be problematic too, in that I only yielded a teeny weeny amount from my bone biopsy - my onc wants to hang on to it for the future. They are welcome to everything else though!
Regards..... Pam

Re: The metastatic breast cancer alliance
 

I just emailed them, I have concerns about "giving away" ALL of my tissue samples, which also leads me to ask - WHO HAS THESE SLIDES? The most recent sample would be from 2002/03. And two different hospitals. I mean, they can't possible house all the samples they have, can they?

I don't know if I'm de Novo, but I am Non-compliant. And, if they can locate the bitchy gene, I'm sure they'll find that it plays a big part in my survival.

Re: The metastatic breast cancer alliance
 

Flori,
I think de novo means stage IV right from the start? I'm with you on the bitchy gene - only the good.......
Regards... Pam

Re: The metastatic breast cancer alliance
 

I filled out the forms. Was so glad to learn about the project.