Friday, March 15, 2013

METS MATTERS MOST

MMM.

In a past life, those three little letters were an acronym for three **other** words but that's a secret between two people. I'm one of the people.  Good luck finding the other.  Or getting me to share the secret.

Today, they mean what they mean.  Metastases Matter Most.  It's not just breast cancer.  It's ALL cancers.  Science has come far.  Just like I believe any advances that further our understanding of the human brain will translate across to many different diseases, cracking the code of the molecular, cellular, nano particle or whatever else these very brilliant researchers have on those slides is going to transcend any one cancer.

On Tuesday evening, I was pretty wow'd by the caliber of the conversation that took place on a stage in an auditorium at Rockefeller Research Lab on the campus of Memorial Sloan Kettering Cancer Center. The webcast won't be available on the MSK site for another six to eight weeks but it will be worth the wait.

What impressed me most?  Much of the talk was devoted to the treatment of metastatic disease.  I don't know where else the voices of the mets patients are being heard but I know they are front and center in the minds of the doctor researchers who were on the stage.

A few of my favorite lines (bearing in mind they are paraphrased since I am not a stenographer):

  • The ultimate goal is to see that everyone is free from fear in ten years time.
  • We need to shift our focus to study metastatic disease.
  • We've been studying the cows in the barn to see why they stayed instead of looking at the cows that left.
  • We need to collect metastatic tissue.  
  • The human factor is of tremendous importance.  (It's not only about the slides and the computers, it's about the connection between doctor and patient.)
  • It's all about being informed and making informed decisions.

The problem lies in research funding.  Larry Norton closed the presentation with a political observation.  We need to be screaming and shouting at our leaders in Washington.  Science is on the edge of greatness and it can and will be halted if this mess in DC doesn't get addressed.  And FAST.  I suppose Dr. Norton has heard his fair share of looking to the private sector.  He said that we can't count on corporations to just hand over money.  They aren't in the business of funding research.  They are in the business of selling products.  Tru Dat is how that goes if I have my street lingo down.

We are back to grass roots fund raising and the philanthropically minded and to that end, I was immeasurably impressed by something that was shared by Dr. Norton.  The Breast Cancer Research Foundation does what their name implies.  They fund research.  There is a stellar scientific advisory board and then, there is Mr. Leonard Lauder.  More about him in a moment.

A Founders Fund was established to honor the memory of Evelyn Lauder who died of ovarian cancer in 2011.  The first grant from that fund was awarded in November.  It is an eight million dollar grant for an international multi-institutional study to be carried out over the next two to three years.  In addition to the eight million dollar grant, Mr. Lauder appointed Sotheby's to auction several pieces of jewelry, with the expected 13M proceeds to be infused into that grant.  In one day, at one auction an additional 19M dollars was raised.  The vision of the work will address how to "thwart breast cancer mortality."  Those words are MUSIC to my ears.  Save Lives First.

Building on the foundation of the Cancer Genome Atlas, the research holds unprecedented promise to change the cancer landscape. For ALL cancers.  I will be watching this with great interest (and in exactly one month, I'll be watching the Supreme Court with equal interest....).  My advocacy community extends far beyond breast cancer.  I have friends whose strong voices must be heard as they push with such tenacity for better treatment seeking that huge jump in survival of lung cancer, brain tumors, rare cancers just to touch on a few.

The problem?  Not every researcher has access to someone like Mr. Lauder.  The cuts that have already taken place in Washington DC are going to completely crash the funding of all sorts of research.  Have you spoken out?  I've been shouting since November.  And I'll be shouting again in April.  I will be at the annual AACR meeting.  (More on that in the days ahead, I'll be seeking suggestions for a little project!)   AACR adjusted the meeting to incorporate this rally into the program.  THAT is how important it is to send a message that we expect our representatives to knock off the childish nonsense  and get back to the jobs they were chosen to do.  By us.  I know the folks from Research America and Faster Cures will be in that crowd.  I'm sure there will be plenty of others, too.

ONE voice, for the benefit of all.

Lots more in the days ahead.... about AACR, about gene ownership, about the kindness of Tal (who? The CEO of Medivizor), about an interview posted on Scarves Dot Net, about scanxiety, chemoversaries and whatever else is swirling in my head.

For now, I'm shutting down for the weekend.  It's social media hiatus.  My 48 hours of self imposed, FORCED disconnectivity.  Happy Friday.

Oh yes.. and what I'm sure will be repeated over and over and OVER.. Beware the Ides of March and all that jazz, too....

4 comments:

  1. Thank you for this very encouraging report from the Rockefeller Research Lab at MSKCC. The way they are approaching metastatic disease is so encouraging. I am looking forward to the webcast and thankfully I know you will let us know when it comes out. The AACR meeting also sounds fascinating. I too have put myself on social media hiatus for the weekends and I just started it last weekend. I am going to wish you a happy weekend again and I send cyberhugs to you, your mom, and the rest of your family.

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  2. dear anne marie,

    i'm looking forward to the webcast and thank you for posting about what discussion focused upon; sounds as though there will be a lot of interesting and encouraging news. also, i want to assure you that i will continue to visit the site that helps us contact our washington reps about the urgency of needed funds for research.

    i hope this week-end gave you a much needed rest, and that you and your mom are both okay.

    love to you both, XOXOXOXO

    karen, TC

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  3. Annemarie, I instantly thought of you when I watched this video. I wish you'd watch it when you have time. This is the stuff that people (esp medical community) just aren't admitting or talking about.

    http://youtu.be/BCvCMc-XTSI

    Most sincerely--Andrea
    XOXOXO

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  4. Fetuses X-Rayed during Pregnancy in the late Fifties. My First Cancer was diagnosed in 1963-- 50 years and 4 Cancers. Breast Cancer Stage I in 2000 and METS Stage IV diagnosed 2011. Currently in therapy. Appreciate reading that METS does matter !

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