Monday, December 10, 2012

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!



23 comments:

  1. Replies
    1. I have been through so many surgical procedures that I would be reluctant to undergo anymore at this time. I would however certainly be willing to "donate" part of the original tissue that was removed.

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    2. Thank you..... I'm doing my own random survey here... hoping that it might make a difference??

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    3. Yes, I would do it in a heartbeat!

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  2. AnnaMarie, So glad you enjoyed Texas. It's always an adventure down here. I would submit to having tissue pulled, and extra for Dr. Norton. My only requirement for this would be I am being put down for some other procedure and would request more samples be taken. Also I have the slides from the original biopsy they did Dec 2009 right before my Met BC diagnosis, I can request a sample from this biopsy. If it would help with the research I am all in.
    So glad you had a safe trip and really looking forward to the daily blogs on all you heard.

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    1. Thanks, Christine...

      This is exactly the kind of input I hope to be able to compile and then, find a way to approach him!! Gotta start somewhere!!!

      Will let you know what, if anything, happens. I think in this context, he was talking fresh tissue samples they he knew were being properly collected and frozen. If something else happens and they want previous tissue, I'll holler!!!

      xoxox

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  3. For the wealth of knowledge this could give to anyone battling this disease would or could be very helpful. Yes, I would be happy to donate. I don't know if this means anything but my BC came back in the fluid lining my lung & abdomen. I don't know if tissue was involved, I don't think so. I would only have fluid. So far it hasn't found it's way into any organ. Which I'm really thankful for.

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    1. I'm really thankful to read that, too....

      I have no idea where or if this will go.... but I wanted to be able to point to information and say, "Here. Women are ready...." And maybe that would push the research....

      Thanks for chiming in.. and I'm hoping that you stay exactly as you are... with NO tissue......

      ((hugs))

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  4. AnneMarie, it's so interesting that you asked that. I was under the impression 2 years ago when I attended SABCS that's where the future of figuring out how to move research forward with MBC was to get MBC tissue and analyze it for MBC. I would have to dig out tons of notes from two years ago, but one thing I learned from attending two years in a row was that there were things that were reversed from the previous year. For example with the CYP26 test to see if tamoxifen was effective, a 2009 trial proved it was a great test and a 2010 trial proved it wasn't. I bring this up because one of my frustrations is I think there needs to be so much more focus on tests for MBC so that we can prevent deaths and as you can see there is lots of focus on tamoxifen when there has been too many studies of the same thing and we need to move the focus to MBC. As patient advocates it is clear we need to get this message out. I see a great advantage to studying MBC tissue and Christine's mention of her biopsy tissue that is already taken shows that there should be much more study of that tissue. When I had primary BC I signed for my tissue to be used for further studies. Don't they have something like that for tissue being tested for MBC?

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    1. Susan,

      My tissue is on ice, too. This conversation was specifically about seeing who might be willing to undergo a biopsy just for the purposes of submitting "new" tissue from a metastatic site. I think before anyone tries to set up such a study, they would want to know they would have enough women willing to do a biopsy solely for the purpose of using the tissue in a lab.

      Studies matter.... and the only way to fill studies is with willing participants!

      AM

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  5. ME!! ME!!!! PICK ME!!!!! I would do this in a heartbeat. Let me put the word out to my peeps and I'll get back to you. What an amazing guy who is thinking outside of the box. Yes we can.

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    1. Thank you for sharing that!!! And yes, please do let me know what you hear. I'm not a mets patient, just a "Fearless Friend" who is determine to keep making noise until every voice is heard....

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  6. I know that some of my original tissue sample from when I was diagnosed with MBC was used in some kind of a study about breast cancer. I'd be willing to have a biopsy to help with more research.

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    1. Karen,

      Thank you for letting me know... I'm keeping a tally!

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  7. I had liver mets. I don't think I'd want my liver cut into just for the hell of it or for research, but I did have a liver biopsy and I would be willing to let whatever they took there go to research. So I think it depends on where the mets are and how extensive the surgery is to get at it. I would be willing to donate tissue, and even to harvest some specifically for research... but I wouldn't want to undergo some extensive or serious surgery to get at it if there wasn't another reason to do the surgery too. FWIW, My original stage 2 tumors are somewhere, I believe.. but that was so long ago I have no clue where anymore, and I have the vague notion that I signed something to let part of it go to research.

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    1. I agree with you, Marie about depending upon where the mets are located and how extensive the surgery might be. I have no idea (as I said before....) if this would even go anywhere, BUT.... I really hope to compile enough information to see if there are enough people whose tissue can be more "easily" removed.

      When this was being bantered about... the doc was almost thinking out loud and reiterated his first priority as, "IF it could be safely done...."

      Thank you for sharing....

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  8. As interesting as this sounds, I'm not sure I would do it. I think it would be very helpful to have the tissue and would love to see people be able to donate at the time of their actual biopsy, but a bone biopsy is very painful and I'm not sure I would undergo that for research. In addition, some research indicates that when you have biopsy or surgery it just opens up the body for more exposure. I was stable with my scans, but we decided to have my hip replaced so I wouldn't be confined to wheelchair or walker (am only 47 years old). Had that done in August 2011 and in December more mets showed up in other places in my bones. Obviously, there is no way to know whether that would have happened if I hadn't had the surgery, but it makes me hesitant to do anything that isn't necessary.

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    1. Thank you for sharing and again, it's all of these perspectives that matter. I suppose I could possibly take these answers and formulate a survey with the help of CJ and Ginny and perhaps have them post the survey on the METAvivor and MBCN websites. I deeply appreciate your input. Are the mets stable? I hope so...

      ((hugs))

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  9. I wasn't trying to ignore the question, I was just wondering after I read that Christine's comment if they could do a study with the original tissue that determined there was MBC so there wasn't a need for another biopsy. Either way it's so great that you are looking in to this. Thank you!

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    1. Oh Susan,
      I didn't think you were ignoring the question. I misunderstood your comment. I thought you were saying to use the tissue before MBC was dx'd. Hope I didn't come off like a wise ass in my reply to your first comment. Definitely not my intent although in re-reading my own reply, it sounds a bit dismissive...... GEEZ... I wonder who was bugging me or distracting me when I typed that.... it's really not my style!!

      xoxo

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  10. Kuddos to you AnneMarie! This is exactly what we need to do to show researchers we want to be involved and are serious about being a participant in the solution and not a victim to the disease. As I recall from SABCS 2011, there was talk about doing MBC biopsies. And it didn't sound like it was just for "research", I was under the impression is was to determine what treatment the patient needed. But the researchers had concluded that women would not be willing to participate. PROVE THEM WRONG, ANNEMARIE!! I also was surprised to learned at SABCS that the recurrent tumor may not have the same markers as the primary tumor. If I were MBC, I would want my tumor biopsied. How do doctors know how to treat it if it isn't biopsied?

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    1. I'm on a campaign now. I agree with you. If I were MBC, I would want to know the biology of the tumor. And yes, it is possible for someone whose primary tumor was ER+ to have the metastatic area be, for example ER- ....

      Dr. Norton of MSK did a presentation and he told a story of a breast cancer patient who presented with lung lesions which were automatically presumed to be mets. No biopsy was done and she went for a 2nd opinion. They DID a biopsy and her "lung mets" were actually tuberculosis. There's a BIG lesson in that story.

      Just because it looks like a duck, quacks like a duck and may even waddle like a duck.... it may NOT Be a duck.

      xoxox

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