METASTATIC PATIENTS, YOUR THOUGHTS??

I'm back from San Antonio and I expected this first post would be a spin on Tony Bennett leaving his heart in San Francisco.  I left my brain in San Antonio.  My brain remained in Texas and all of my notes are beside me in NY.

I have much to talk about...

Tamoxifen, which I already addressed, will be discussed again.  I have a few other issues that were brought to my attention on that 5 v 10 year debate.  And, I have the video interview with Dr. Julie Gralow which I will share.  Took me over three days to hit the play button as I was certain I looked like a bumbling idiot.

Chemobrain?  I recorded that presentation on my iPhone and I have access to the slides.  I will review it in an attempt to find one single redeeming piece of information in a study that was, in my opinion, a GIGANTIC WASTE of MONEY.  From where we all sit, I'm fairly certain there will be a unanimous consensus that the study was flawed for a whole mess of reasons.  I shall elucidate in a day or two.  And, along those same lines, I'll share another video where I was asked about the REAL chemobrain study.  You know.  The Jody One.  The NBC National Evening News.

Today, I have a question for the metastatic patients.  It comes as a result of a session called Advocates in Action.  The flyer was red.  That would have been enough for me to select that particular event but learning that CJ was going to be on the panel and Dr. Larry Norton was participating, it was a no-brainer.

CJ is one of the founders of Metavivor in case you are just joining me in this blogging adventure.  Larry Norton is a doctor at MSKCC.  "Doctor" doesn't even scratch the surface.  I've been a huge fan of Dr. Norton since I saw him on a stage in the auditorium on the campus of MSKCC.  The video is embedded in a blog post I wrote in July.  He is witty and quotable but I'm going to stick to a particular question that he asked during the presentation last week.

Larry Norton is a compassionate doctor who has the ability to hand hold, knows when it's appropriate to interject a little humor into a situation, spends time building relationships with his patients and refuses to buy into any sort of hype.  Throw a question at him about the clinical use of something on the horizon and he has just one response.  "Show me the data." Rather than speculate, he explains what must be done next to move the research forward.  He believes in evidence based science.  He believes in research.  In fact, he challenged one of the presenters at one of the general sessions.  He wanted to understand how (or IF) the research he had just seen on those ginormous screens would translate to metastatic disease. He is the ultimate #FearlessFriend.

During the presentation hosted by Vital Options,  I have many quotable lines but one take away.  He believes there has been a big impact thanks to the involvement of advocates in research planning.  That's us.  Helping steer the direction of the research.  It's the same theme I heard at Partnering for Cures in NY.  The keys are in our bodies and to that end, he posed a question.  It may have been rhetorical or it might have been exploratory.

"Do you think it's possible to get tissue from metastatic patients?"

He qualified his question by making sure it was understood this would only be done if there was no risk of harm to the patient.  Obviously, there are always risks associated with any sort of surgical procedure but if you were deemed healthy enough to undergo anesthesia, would you consent to a biopsy for the sole purpose of having that tissue used for research? No insurance nonsense, no cost to you.

So, what do you say?  I can't answer that question.  CJ did say she believed the metastatic community would be inclined to WANT to give tissue if given the opportunity.  I'm thinking if I can start some sort of ball rolling to get a sense of how many might be willing to participate in such an undertaking, we can show Dr. Norton the "data."

As the words were coming out of his mouth, you could almost see his thoughts in a bubble.  He may have said that he didn't know how it would even be possible but I got the absolute sense he was already formulating the logistics if he felt he had enough potential donors at the ready.

So?  Speak here.... no names necessary.  Anonymous comments allowed.  Spammers will be shot on sight.  I still have the Texas attitude thing, y'all.  I don't know where THIS is going, or if it's going anywhere.  I do know this, you never know until you ask... and......it never hurts to ask.  Your turn.  GO!