Monday, April 8, 2013


It's not just a reserved seat, it's a VIP seat with full access.  There's been lots of running around.  Lots of information.  Lots of notes.  A few tweets.

There are so many different types of sessions running simultaneously, it's daunting.  Genomics is big.  Immunology is big, too.  I am fascinated  as I watch the researchers thinking aloud in some of the smaller sessions.  I was irritated during a panel discussion regarding drug approval.  ODAC is an advisory committee that makes recommendations to the FDA regarding oncology drugs.  The conversation got lively and then a bit heated over the Avastin mess.  Google Avastin and breast cancer if you aren't familiar.  As a patient who understands science and who can read the charts about progression free survival and overall survival, I felt extremely uncomfortable in that session.  I got the sense that patients would NOT be welcome except to plead their cases from the other side of the table.

AND the biggest and best news of all.  My mom's liver enzymes are back down.  The spike was likely from the medication although highly unusual.  The doctor may or may not have this information.  I DO.  Thanks to the patient portal at MSKCC, the lab results were completed at 9:30PM on Friday.  I logged in to the site to check one last time for the day and saw results 4/5/13.  I held my breath as I scrolled to the liver enzymes.  We were in the oncologist office on Friday.  Let's just say I already knew exactly how he was going to approach the treatment.  Check enzymes, if still high but not highER, half the dose.  Bottom line, although he won't be around until tomorrow to give the official word, it appears there will be no change in treatment protocol and that's GREAT NEWS!

Sheeesh... now that I'm thinking about this, I COULD have gotten up and talked about this whole thing to that panel.......  After all..... this is a side effect that SHOULD be reported through the FDA website.

And....I got to meet Yvonne.  Time To Consider the Lillies whose prose is in a word: exquisite.... Yvonne.  Her blog is renamed Considering the Lillies.  She is in DC for something completely unrelated to AACR and it was just luck that we were in the same zip code.  More on that too.....

SAME STORY FROM LAST WEEK.....  It is THAT important:

In two days, I am heading 200 miles south for the annual AACR meeting.  My poster is done.  There will be an unveiling after it's presented.

Today, I am going back on the soapbox about the sequester.  When I filled out the application for the survivor <----> scientist program in mid November, one of the questions I was asked -- what are my advocacy priorities for the coming year?

The first sentence of my response reads as follows:

I am currently quite vocal on social media to make sure everyone understands the potential impact of sequestration on research funding.  This is an urgent matter that must be addressed and time is of the essence.

Again, I wrote those words in NOVEMBER.  The following month, we had the whole world yelling about the fiscal cliff.  And still, no one quite understood what was about to happen.  Now, it's happening.  Medicare payments are being cut to clinicians.  Unemployment benefits, Head Start programs, Department of Defense furloughs... it's an epic mess.

And why?  Because when we should have been acting.... in early November by pressing our local leaders to sit down at that table like adults and do the job we elected them to do, they ALL picked up their marbles and went home.  It's hard to remain apolitical when the problem can only be solved in Washington DC but the rhetoric I'm watching particularly on twitter is counterproductive to anything remotely resembling resolution.

Bottom line.  It's everyone's fault.  The finger pointing has to stop.  The posturing has to stop.  The grand gestures which have little or no impact HAVE to stop.  I don't care about the president's symbolic pay cut.  It's not fixing a damn thing.  We voted for our officials and we voted for them to do a job.  It doesn't matter if we lean left or right, it's time for us to all lean forward.  And push.  Hard.

AACR is streaming the rally LIVE on their You Tube channel.  Apparently, I will have a reserved seat for this event.  Right place, right time.

The live stream may not work via this blog.  The actual You Tube link is here.  Monday.  11:00 AM.

I may be bogged down packing and preparing for this meeting.  It's possible this post will remain up through Monday.  It depends upon how much running around I do when I'm in DC and whether or not my brain short circuits from information overload......  


  1. You are so right about the sequestration. All of them have got to stop the finger pointing and get it done. I am so glad you are going to AACR and I wish I could have joined you! Thank you so much for sharing the link on YouTube and I knew your poster would be fantastic. You are going to do great and I also look forward to all of the info that you are going to find out. Hugs and XoXoXo (and an extra hug for your mom) - Susan

    1. Thanks, Susan. I'm pretty excited about the meeting and the rally, too! Mom has a doctor appt tomorrow so I can deliver the hug in person!!


Something to add? Do Share!