Metastatic Breast Cancer Awareness Day - October 13th

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SIROD
SIROD Member Posts: 2,194 Member
In case you didn't know. Those of us who are stage IV are aware.

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  • MAJW
    MAJW Member Posts: 2,510 Member
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    Have...
    To admit, being stage IV, myself, I had no idea there was a "special" day for it...personally I hate being reminded daily, in the month of October, that I have bc....but that's just me....
  • SIROD
    SIROD Member Posts: 2,194 Member
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    MAJW said:

    Have...
    To admit, being stage IV, myself, I had no idea there was a "special" day for it...personally I hate being reminded daily, in the month of October, that I have bc....but that's just me....

    Explanation on Why it's Important
    Today is METASTATIC Breast Cancer Awareness Day.

    To most, just another day in Breast Cancer Awareness Month. To us, as MBCN members, a day with a very special significance.

    Members, worked very hard to make this day official. In 2007 and 2008, members from across the country contacted their mayors and governors to spread awareness of this disease in their areas. In 2009, a small group of MBCN members from across the country went to Washington DC. They were successful in getting both the Senate and House of Representatives to officially declare the day. It is because of our members that we finally have our day.

    I was diagnosed straight to stage IV in 2004, the same year Nina Schulman and Jane Soyer started MBCN. The breast cancer world at that time was not a welcoming place for those with metastatic breast cancer.

    In 2004:
    There were few if any breast cancer groups that recognized metastatic breast cancer.
    There were no conferences specific to the metastatic breast cancer audience.
    There were few, if any, educational materials and pamphlets written for those with stage IV.
    Support groups specifically for those with metastatic breast cancer were almost impossible to find.
    There were no groups raising funds to support metastatic specific research.

    Today:

    Now that we have our official day, MBCN has delved deeper into our mission to work hard on education and outreach. MBCN encourages other breast cancer organizations, hospitals, oncology offices and cancer centers to recognize the day with programs and educational materials specific to metastatic breast cancer.

    There are several support groups in existence that are for those with metastatic breast cancer. Some started by our own members!

    We've reached out to news media to ask them to include stories of those with mbc in their coverage of the disease and news media has reached out to us!

    The Metavivor group has handed out their 3rd grant to a researcher specifically studying metastasis.

    On October 29th, MBCN will be having our 5th national educational conference for those with metastatic breast cancer. There is still time to register!!!

    You are not alone. There are an estimated 155,000 people in the US living with mbc. Our organization has more than 2300 members and is growing daily. Our needs are urgent. We need more than the estimated 2% of research funds to be spent on mbc research. We need more and better treatment options. Options that are less toxic and will extend our lives. Options that can truly make this disease chronic. We need to be accepted and included in the breast cancer community. We need people to look into how their money is being used when donating to a breast cancer cause.

    We have a very long way to go, but we are making progress.

    Today is about awareness. If every one of us took a moment today to educate just one person on the realities of living with mbc, I know we could push that progress along.

    Sincerely,
    Suzanne Hebert
    Vice President
    Metastatic Breast Cancer Network
    www.mbcn.org
  • SIROD
    SIROD Member Posts: 2,194 Member
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    MAJW said:

    Have...
    To admit, being stage IV, myself, I had no idea there was a "special" day for it...personally I hate being reminded daily, in the month of October, that I have bc....but that's just me....

    Pinkwashing
    Dear MAJW,

    I don't like the pinkwashing of October either. I could do without the reminder each October. I do believe research funding for metastatic bc is very important. If they fix us, the rest of it will follow. Everyone should want that objective. It is not the tumor in the breast that kills people but the one's that go to vital organs that do.

    Best,

    Doris
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
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    I was just diagnosed this
    I was just diagnosed this past June as Stage IV (original dx in 7/09 and 1st recurrence in 8/10). I, also, had no idea that there was a "special" day set aside for us. It's not a group I want to be a part of but I am hopeful that one day there is some progress in this fight and a means of defeating it. Thanks for the information.
  • camul
    camul Member Posts: 2,537
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    MyTurnNow said:

    I was just diagnosed this
    I was just diagnosed this past June as Stage IV (original dx in 7/09 and 1st recurrence in 8/10). I, also, had no idea that there was a "special" day set aside for us. It's not a group I want to be a part of but I am hopeful that one day there is some progress in this fight and a means of defeating it. Thanks for the information.

    I
    Yes, even our ribbon is different! The good about this group is that the awareness is in trying to get more funding for research. Problem is that there is very little awareness as to the small amount of monies out of all the donations and fundraising goes to research to find a cure. Currently, just under 98 percent of all monies collected goes to first line defense, awareness and education which are all good areas, but for those of us who have stage IV, and for those that will be diagnosed with stage IV, research is needed so this disease can become chronic, rather than terminal.

    However, having a special day that goes unnoticed for the most part, doesn't really promote awareness! It would be really nice if we could get the greater bc promoters to recognize and educate on this!

    Sorry, but this is my greatest peave of everything bc related, that there is not enough funding for bc research to find a cure.
  • SIROD
    SIROD Member Posts: 2,194 Member
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    MyTurnNow said:

    I was just diagnosed this
    I was just diagnosed this past June as Stage IV (original dx in 7/09 and 1st recurrence in 8/10). I, also, had no idea that there was a "special" day set aside for us. It's not a group I want to be a part of but I am hopeful that one day there is some progress in this fight and a means of defeating it. Thanks for the information.

    Metavivor's
    There is an organization that is working endlessly on behalf of those who are stage IV.

    They are Metavivor (for metastasis survivor).

    Here is their web site: http://www.metavivor.org/

    They are also on facebook

    http://www.facebook.com/pages/METAvivor-Research-and-Support-Inc/194759687203856

    They are located in Maryland. Read their webpage and facebook, they can say it a heck of a lot better than I can. These people are all about research money for stage IV.

    Best,

    Doris
  • SIROD
    SIROD Member Posts: 2,194 Member
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    camul said:

    I
    Yes, even our ribbon is different! The good about this group is that the awareness is in trying to get more funding for research. Problem is that there is very little awareness as to the small amount of monies out of all the donations and fundraising goes to research to find a cure. Currently, just under 98 percent of all monies collected goes to first line defense, awareness and education which are all good areas, but for those of us who have stage IV, and for those that will be diagnosed with stage IV, research is needed so this disease can become chronic, rather than terminal.

    However, having a special day that goes unnoticed for the most part, doesn't really promote awareness! It would be really nice if we could get the greater bc promoters to recognize and educate on this!

    Sorry, but this is my greatest peave of everything bc related, that there is not enough funding for bc research to find a cure.

    For Camul Some are really doing something about it, I'm impress
    Hi,

    The web page of Metavivor is trying to change all that and have a color ribbon for us which is not pink!

    Check out their web page.

    Their first grant went to Dr. Danny Welch, read a little about K1ss on their web page.

    http://www.metavivor.org/METresearch.php?KISS1

    This was taken on another web site posted by the President of Metavivor, Dian Corneliussen-James known as CJ.

    I've just learned of a very interesting and promising Phase II Trial which is enrolling patients at a variety of cancer centers throughout the US and in Australia, Singapore and China. The trial uses two epigenetic drugs to prompt malfunctioning tumor-metastasis suppressors to turn back on. For clarification, everyone has over 30 tumor-metastasis suppressors, which work to inhibit metastasis under normal circumstances. For those of us who metastasize, many or all of these have malfunctioned and turned off.

    You may remember that METAvivor funded research for the KISS1 metastasis suppressor in 2010 whereby KISS1 was reactivated and injected into mice. The KISS1 research resulted in showing that after the re-activated KISS1 was injected, the metastatic cells that had moved beyond the breast were
    rendered dormant -- they could no longer multiply, bind together and form new tumors.

    In this new trial, the drugs work to prompt most, or all (!) of the malfunctioning metastasis suppressors to turn back on. Patients are treated with 5-Azacitidine and Entinostat, which I understand are both well
    tolerated and have minimal side effects.

    To qualify, patients must be HER2-negative and have failed on an hormonal drug or they can be triple
    negative. The treatment consists of a combination of injections and oral drugs over a period of 8 days each month.

    Trials are starting at a variety of locations throughout the US and overseas as well as in Australia, China and Singapore. The protocol is detailed at

    http://clinicaltrials.gov/ct2/show/NCT01349959


    In Maryland, the trial is being held at Johns Hopkins and I have a contact if you're interested in more information on that trial: zahnoci@jhmi.edu.

    I won't pretend I understand the whole thing, but this group is sort of grass root. They are not just talking about finding a cure, they are raising money and finding the right researchers for results. I am very impress with them.

    Doris