[Paula O]

Thanks for the info, Phil. Yesterday was the first email within our group looking for cancer survivors for the media to interview after certain sessions. They recruited and got volunteers for someone on Tamoxifen, with diagnosis of Triple negative, and Her2 NEGATIVE. I wonder if they'll be looking for someone who is Her2 positive who wants to talk about TDM-1 and it's delayed availability . I guess that would be me if that opportunity arises after I ask God to help me be brave and bold to speak up and get over feeling chicken-hearted and nervous with a media person or doctor who knows way more than I do . I'm concerned that I don't know enough to represent the cause well enough and am happy to hear the key points and get help with coming up with good questions. Truthfully I feel ill-equipped and inadequate to get before the media and start questioning these doctors either. I can picture it, cameras rolling...my response after they ask me something I don't know or defend their position: "Excuse me please, while I look through my notes from Phil to find the answer to that question." Ha, ha On a serious note though, I'll bring your website address along http://stageivsurvivor.webs.com --even handing somebody that would be a good thing because "You da man, Phil and Lorraine is the gal" in doing a top notch job representing this important cause. It can be rather intimidating to rock boats and question experts but I know one can get over it, just do their best, and speak the truth as you say. What did you do to arrange the interviews you've done, Phil? Are the media mingling among the people afterwards or is this by invitation only ahead of time more typical? I'll bring along all the questions people have shared they'd like answered, and if the opportunities arise to get answers from some of these presnters, I'll try to do that.


I attempted to get Her2/TDM-1 as my "Hot Topic" to be responsible writing up an article in layman's terms which is part of the requirement in getting the scholarship. I volunteered ahead of time for it, asked if I could switch with somebody assigned to it but that didn't work out. That's OK. I'll be learning alot though covering the Mini-Symposium 2: Breast Density: Mechanisms and Clinical Implications.

My favorite nursing job I ever had was as a clinical research nurse working at the U of Az, long, long ago, conducting clinical trials in various phases of study , mostly investigational antihypertensive and cardiac drugs. One time I was asked to present one of our abstracts at an International Symposium in Geneva, Switzerland (a fine place to be invited to I must say--there for a week with enough time to do a bit of touring with the Dr --one of my bosses--and nurse I travelled with which was fun, fun, FUN!). However, I witnessed doctors raking each other's research over the coals, interrogating each other during that conference and others I attended during the Q & A times Honestly, some of those docs seemed downright hostile towards each other after the presenting was done.(Thankfully they were merciful on me after my presentation--Whew, was I ever glad to have the standing up in front of all those doctors from all over the world experience behind me!!!!) I understand the need to back up research and make sure it's good quality stuff and not messing with statistics though and understand the importance of people looking over each other's research and peer review can be a good thing. Is there a lot of grilling of the presenter like that at this conference--is that what these Q & As are like in this conference too ? Have you found any doctors and scientists that have really gotten behind the cause of stopping this crazy delay in getting TDM-1 out there for the patients who need it? What exactly is the concern that is causing the delay by the FDA?

OK, onto the next topic---everybody getting together. Thanks, Stephanie for responding.

Let's plan on this:


---It looks like the easiest time for everybody to meet and connect is right after the 6PM to 7:30 PM Her2 meeting on Tuesday in Exhibit Hall D. Let's remember to get a group photo then. I know Debbie mentioned she is carpooling with others and an evening meetup is difficult but hopefully it'll work out for a short visit anyway since it's right after a meeting. Then, let's everybody who wants to go out to eat together.

Tuesday night looks much better than trying to work something out during exhibit hours. Let's skip my proposal of trying to get everybody together Wednesday too. I'll see how things go for me that day--maybe I'll say hi to whoever is manning the booth during lunch time then. I'm sure we'll all drop by the booth sometime during the week and see whoever is manning it then and perhaps it'll work out to sit together during some of the meetings.

(Please note Stephanie's correction below of directions to Her2 booth--am copying from email so Joan, Debbie, Amy, and I all have it--it's also on the exhibit map of course)

"Our table top booth - T8 - is on the far right side of the plan and is not on the end (like it was last year!).

We were close to those round table over in the middle last year, so none of those close by this time.

Further to the right, and off this map, is the Great Hall where the main presentations will take place. So we are close to that.

Hope this helps give you a mental image of where we should meet."

Paula

P.S. What kind of freebie food is typically availalble during poster sessions, etc? Do you usually see any raw fruit and veggie trays by chance?