View Full Version : Joe, you recently posted that
in the last 6 years her2support has had over 1 million visitors, 100,000 posts and replies and the sites pages have been viewed over 5 million times, I went in search of how many visitors were registered, but didn't find that stat (probably blind with exhaustion from my many hours at SABCS not only listening to talks but searching out poster presentors and speakers at SABCS and engaging them in conversation.
I went among the poster presenters and speakers at SABCS with the unspoken mandate to search among them to find those who represent the best hope of fulfilling the wishes of those who participate and/or just lurch on this site who are willing to donate serum, part of their surgical specimen and the right to have others access their medical records (with privacy maintained, of course) for the greater good ie, to have these researchers utilize the information gathered to further the understanding of the causes of, behavior of, and best treatment for her2+ breast cancer.
I took the mandate I believed I had very seriously and sought out those who had published the best research and those whom I felt were presenting useful information, were associated with researchers worthy of reslpect and those who , in conversation regarding their posters (or in once case, another researchers' posters) demonstrated a passion to provide clinically useful progress in furthering understanding in an extraordinary way and/or providing in the near term something useful respect to help deciding between treatments or the treatments themselves for her2+ breast cancer.
I came up with four such persons. I will post this as its own thread and under the original thread by Alaska Angel in which I suggested this as a way to honor those we have lost as well as benefit all.
I explained to these researchers that I could not promise to deliver these samples, but that over the almost three years I have provided information to this site that I sensed there were a large number of those whom I would, rightly or wrongly, expect to be women (and men) of action and not just words. I hope you prove me right! I will be adding more over the next few days and weeks as to how we can turn this from a nice idea into a powerful
tool. All the researchers were extremely intrigued by the opportunity to have not just the large numbers of specimens this site could potentially make available but also the medical histories/records that go along with them. Here in the US that has been made exceedingly difficult by the medical privacy laws referred to as HiPAA that were passed under Clinton and have been a bane to medical researchers ever since.
My personal favorite among the researchers was the one responsible for that wonderful paper wherein her2+ breast cancer (actually a cell line which is her2+ER+ called BT474 when purposefully utilized to cause breast cancer in mice) could be CURED, yes CURED, by a combination of pertuzumab, herceptin and Iressa (when I asked one of the authors at the AACR breast cancer meeting in San Diego in October why it was felt that it was not necessary to add estrogen deprivation or tamoxifen to cure the disease in this one instance, his answer was that it was postulated that blocking the four her family members' pathways simultaneously was so effective SO QUICKLY that there was insufficient time for the tumor to mutate (or another minor clone to become dominant).
In view of the views of Max Wicha, presented at last week's SABCS that her2 is responsible for enriching the number of stem cells within any one tumor, supported by Jenny Chang's paper in which she showed via a neoadjuvant lapatinib trial that neoadjuvant lapatinib caused a decrease in the stem cell content of a her2+ tumor (in humans, not mice!--she has not yet done the same experiment with neoadjuvant herceptin) it looks like her2 neu is the leading beacon pointing the way to making progress in breast cancer in a way that may benefit research into ALL CANCERS.
I did not speak with Jenny Chang, but she is at the same institution as the "favorite paper author" I apoke of above and will be sharing this information (possible availability of numerous her2+ breast cancer tumor specimens with matched medical histories and possibility of serum samples) with her institution (Baylor) and her colleagues.
Once I get unpacked I will provide more information on those I felt were worthy of winning this lottery. There may have been others, but these
seemed to take the cake.
Now it is up to all of you (including those in the UK, Europe, etc, as I found one researcher from London) to put your pathology where your mouths are ( a variation of the English phrase "to put one's money where one's mouth is", which refers to actually acting on one's word, not just maklng promises).
One is part of the problem if one is not part of the solution.
I informed all researchers that I am participating incognito and wish to remain that way. If others, such as Cynthia (with her legal background), Rhonda H (with her no-nonsense proactive approach and generosity) or others wish to come forward and help with the logistics of all this, it would
help speed this from a nice idea toward fruition into a reality.
Comments?
hutchibk
12-17-2007, 11:32 AM
All I know is that I too heard the words "cure" regarding HER2 from the mouths of 2 researchers at talks that I attended last week. I rushed at the end of the last talk where that happened to ask (and was granted!!) permission to hug him. (Dr. Skip Burris to be exact)
I am near Dr. Chang and Dr. Osborne and BCM geographically and I am so very lucky to have them and their current lightning rod research in my back yard. I was on the brink of visiting them about 9 months ago, but with my current exceptional results on lapatinib, I have not rushed anywhere beyond my own brilliant Onc's office because he too is my encouraging hero... However, after last weekend, I feel like taking my doctor with me and sleeping on their doorstep. I guess a hotel would be warmer, but I am just that encouraged! LOL
Cynthia did initiate a conversation with a few of us manning the booth to ask us our opinion about some things she had brewing in her mind as a result of talks she had heard... Just that the two of you were there fronting our cause with your trained eyes and scientific minds makes me unbelieveably more hopeful than ever. It was a very powerful conference for HER2 developments. I feel very lucky right now to be in this subgroup of b/c patients.
I know that I would ABSOLUTELY contribute my time and all the details of my journey to further my chances for a cure and the chances for all of my current HER2 sisters around the world... and those who come after us.
Thank you for all you did to advocate for us at the conference, Lani! I love the benevolent, incognito aspect of your involvement here. It makes me imagine you as the billionaire who hands out million dollar checks to unsuspecting needy folks at Christmas time...
but information I can dig up up aplenty! (and am happy to do so and distribute it freely--darn that request to provide links!)
A cancer diagnosis seems to be accompanied by a feeling of powerlessness
Information can be hoarded like an arsenal
May you all stock up aplenty for the new year--SABCS certainly provided a cornucopia (I even surprise myself with these words!)
I just hope I can find the time to post/explain all the relevant presentations/posters.
I hope to teach each and every one of you how I look things up so each of you can become
information millionaires, giving away your riches freely to others.
I know that time constraints of work, children, parental care etc as well as health, insurance and financial worries keeps many from delving into the world of information themselves.
But even a little bit of time and a few moments relatively free of fear and worry spent researching would, I believe, empower you.
And exercising the brain seems to discourage the loss of connections/loss of access to information/haze so many complain about.
Wishing you all happy holidays.
I have been trying to post a picture card that truly fits the occasion and have inquired how that is done here. If someone could provide me with that information, I guarantee you will love the "card"
I wish that you had spoken to me in San Antonio as I have been discussing a similar project for several months. I could have introduced you to others who recognize the collection of tissue and serum samples will provide a great deal of data which may lead to the eradication of HER positive cancer. There is also another reason why 2008 would be an opportune time to launce such a project.
As you are well aware, research projects require a great deal of funding and planning, both of which are beyond our scope and financing. I would have no problem with members launching such an initiative and will also offer to construct and host a website for that purpose.
You on the other hand would have to formally construct a study plan to submit along with Grant requests as such an project would require hundreds of thousands of dollars. There is ample funding available through Avon, Komen, Armstrong and other entities.
California has a great program which would partially fund such a study and the State of Texas has recently authorized a cancer research program.
The HER2 Support Group currently holds a very unique status with cancer researchers and enjoys an exceptional reputation. We would act as the sponsoring organization.
A first step might be to host a conference call with all interested parties.
Regards
Joe
I know my strengths and limitations and know I am not the one to take this forward...perhaps my role is best as instigator and fact-finder.
In order to contact these people I have already spoken with and in order to be taken seriously by others with whom I may come in contact, it would help to have up to date stats on this site. I am not pretending to have anything to do with this site other than posting on it and often felt there was an uneasiness having me post altogether. I do not pretend to those I talk with that I can deliver anything, only that I can contact many with her2+ breast cancer, a number of which (we will see how many) might be willing to donate their specimens, allow access to their records and perhaps agree to other requests (serum, buccal swabs,etc). They understand I have no relationship whatever with the organization that runs this website nor do I sit on its board or do ANYTHING but post when allowed.
I found that back in April of 2005 you posted the following:
04-20-2005, 10:24 AM #1
Guest
Posts: n/a
As with many internet websites, we have a counter integrated on our website. IT IS NOT SPYWARE !!!. This is a valuable resource as it gives us a ton on information which we use to manage this site in order to make it more user friendly. We know what pages were visited most frequently, how much time was spent on the website, what operating system and browser the user had. IT DOES NOT GIVE US INFORMATION ABOUT THE INDIVIDUAL USER and protects your privacy.
I check this daily as it indicates the "health" of the HER2 Support Group.
Monday was our busiest day ever with 715 visitors to our website, almost 30 visitors an hour.
Here is a list of what countries visited our site in the past 24 hours
825 United States
39 Canada
35 United Kingdom
23 Netherlands
11 France
10 Qatar
9 Italy
9 Austria
6 Australia
2 Finland
Statistics like these makes it seem all worthwhile.
Warmest Regards
Joe
Joe, I also see that registered members now exceed 2200. Has the geographical mix of the registered (and nonregistered, if you can ascertain that) visitors changed? Is there any way to determine how many visitors there are as well as how many visits ie, the average number of visits per visitor or can cookies tell even in nonregistered visits if the same person is lurking again and again?
Let's see who/how many come forward to volunteer their specimens, vs who/how many come forward to help organize, market, fundraise, etc for this registry.
My degree of further participation will be decided as things evolve. In the meantime, please don't view me as aloof, cold or not a team-player, just as someone whose generosity/volunteerism has limits and for whom privacy is paramount.
I agree that there are a lot of funding possibilities, but I KNOW that I am not the one to take the project in that direction.
Let's see who/whether someone(s) come forward to take things further.
I believe you provide an incredible service by running this website(and aren't thanked often enougth), that it has been a tremendous help to thousands(hopefully we will soon get an updated figure on those thousands), and am grateful that I have been allowed to use it to post information which I hope is useful, hope-generating and/or just stored up as ammunition for the future by those it can potentially benefit.
With all respect,
Lani
PS I think No. Carolina has started a registry, particularly to look at the disparity in survival of Afro-Americans.
found the stats at the very bottom of the page. I was wondering if the number of threads, posts are accurate as I recall you lost a lot of data when the site was hacked. I seem to think I have posted much more (unsure if those posted on the prior servers were added as I am listed as participating since '06 and believe it has been since'05 and am unsure if posts/threads lost in the hacking)
Sorry to ask for something well within sight, but it appears the stats only show up when looking at the board, not when starting or replying to a thread ie if I scroll down now it is not there
Any more insights into the stats (whether complete or just the best we can figure out) would be appreciated
Also new figures on where these participants/lurkers are located ie US vs Canada vs UK,EU, Australia, Asia
Stats for years 2003 - 2007
<TABLE class=standard><TBODY><TR><TD class=tableHeaderLeft> </TD><TD class=tableHeaderRight>Page Loads</TD><TD class=tableHeaderRight>Unique Visitors</TD><TD class=tableHeaderRight>First Time Visitors</TD><TD class=tableHeaderRight>Returning Visitors</TD></TR><TR><TD class=tableContent2LeftSpaced>Total</TD><TD class=tableContent2RightSpaced>5,382,617</TD><TD class=tableContent2RightSpaced>966,210</TD><TD class=tableContent2RightSpaced>665,908</TD><TD class=tableContent2RightSpaced>300,302</TD></TR><TR><TD class=tableContent2LeftSpaced>Average</TD><TD class=tableContent2RightSpaced>1,076,523</TD><TD class=tableContent2RightSpaced>193,242</TD><TD class=tableContent2RightSpaced>133,182</TD><TD class=tableContent2RightSpaced>60,060</TD></TR><TR><TD class=$leftClass colSpan=6> </TD></TR><TR><TD class=tableHeaderLeft>Year</TD><TD class=tableHeaderRight>Page Loads</TD><TD class=tableHeaderRight>Unique Visitors</TD><TD class=tableHeaderRight>First Time Visitors</TD><TD class=tableHeaderRight>Returning Visitors</TD></TR><TR><TD class=tableContent2Left>2007</TD><TD class=tableContent2Right>1,999,307</TD><TD class=tableContent2Right>433,883</TD><TD class=tableContent2Right>334,240</TD><TD class=tableContent2Right>99,643</TD></TR><TR><TD class=tableContent1Left>2006</TD><TD class=tableContent1Right>1,589,289</TD><TD class=tableContent1Right>263,891</TD><TD class=tableContent1Right>175,649</TD><TD class=tableContent1Right>88,242</TD></TR><TR><TD class=tableContent2Left>2005</TD><TD class=tableContent2Right>1,572,735</TD><TD class=tableContent2Right>184,838</TD><TD class=tableContent2Right>125,160</TD><TD class=tableContent2Right>59,678</TD></TR><TR><TD class=tableContent1Left>2004</TD><TD class=tableContent1Right>199,626</TD><TD class=tableContent1Right>68,582</TD><TD class=tableContent1Right>20,759</TD><TD class=tableContent1Right>47,823</TD></TR><TR><TD class=tableContent2Left>2003</TD><TD class=tableContent2Right>21,660</TD><TD class=tableContent2Right>15,016</TD><TD class=tableContent2Right>10,100</TD><TD class=tableContent2Right>4,916</TD></TR></TBODY></TABLE>
We did not have the counter installed for 2001 until first half of 2003.
Now those are numbers that researchers and potential donors to the cause could certainly be impressed by!
Thanks so much!
Any idea of their countries of origin, so we can see if another repository should be placed elsewhere if international laws cause difficulties with cross-border donations of tissues
Please see my latest post on the problem of ownership of removed tissues.
Always something to keep the lawyers busy...
<TABLE class=standard><TBODY><TR><TD class=tableHeaderleft></TD><TD class=tableHeaderRight>Num</TD><TD class=tableHeaderRight>Perc.</TD><TD class=tableHeaderleft>Country Name</TD><TD class=tableHeaderRight></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>2969</TD><TD class=tableContent2Right>70.83%</TD><TD class=tableContent2Left>United States</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>527</TD><TD class=tableContent1Right>12.57%</TD><TD class=tableContent1Left>Canada</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>301</TD><TD class=tableContent2Right>7.18%</TD><TD class=tableContent2Left>United Kingdom</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>137</TD><TD class=tableContent1Right>3.27%</TD><TD class=tableContent1Left>Unknown</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>69</TD><TD class=tableContent2Right>1.65%</TD><TD class=tableContent2Left>France</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>29</TD><TD class=tableContent1Right>0.69%</TD><TD class=tableContent1Left>Australia</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>24</TD><TD class=tableContent2Right>0.57%</TD><TD class=tableContent2Left>New Zealand</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left>http://my7.statcounter.com/images/drill_down.gif (http://my7.statcounter.com/project/standard/drill_down.php?country=be)</TD><TD class=tableContent1Right>22</TD><TD class=tableContent1Right>0.52%</TD><TD class=tableContent1Left>Belgium</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left>http://my7.statcounter.com/images/drill_down.gif (http://my7.statcounter.com/project/standard/drill_down.php?country=ie)</TD><TD class=tableContent2Right>20</TD><TD class=tableContent2Right>0.48%</TD><TD class=tableContent2Left>Ireland</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>16</TD><TD class=tableContent1Right>0.38%</TD><TD class=tableContent1Left>China</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>16</TD><TD class=tableContent2Right>0.38%</TD><TD class=tableContent2Left>Turkey</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>15</TD><TD class=tableContent1Right>0.36%</TD><TD class=tableContent1Left>Germany</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>10</TD><TD class=tableContent2Right>0.24%</TD><TD class=tableContent2Left>Malaysia</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>9</TD><TD class=tableContent1Right>0.21%</TD><TD class=tableContent1Left>Spain</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>8</TD><TD class=tableContent2Right>0.19%</TD><TD class=tableContent2Left>Netherlands</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>7</TD><TD class=tableContent1Right>0.17%</TD><TD class=tableContent1Left>Hong Kong</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>4</TD><TD class=tableContent2Right>0.10%</TD><TD class=tableContent2Left>South Africa</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>3</TD><TD class=tableContent1Right>0.07%</TD><TD class=tableContent1Left>Peru</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>1</TD><TD class=tableContent2Right>0.02%</TD><TD class=tableContent2Left>Lebanon</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>1</TD><TD class=tableContent1Right>0.02%</TD><TD class=tableContent1Left>Portugal</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>1</TD><TD class=tableContent2Right>0.02%</TD><TD class=tableContent2Left>Pakistan</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>1</TD><TD class=tableContent1Right>0.02%</TD><TD class=tableContent1Left>Japan</TD><TD class=tableContent1Right></TD></TR><TR><TD class=tableContent2Left></TD><TD class=tableContent2Right>1</TD><TD class=tableContent2Right>0.02%</TD><TD class=tableContent2Left>Korea, Republic Of</TD><TD class=tableContent2Right></TD></TR><TR><TD class=tableContent1Left></TD><TD class=tableContent1Right>1</TD><TD class=tableContent1Right>0.02%</TD><TD class=tableContent1Left>Italy
</TD></TR></TBODY></TABLE>
This represents the past 5,000 visitors- approximately 3 days
Now I am back to working on my emails!
Lani
PS I hope you and Christine got a chance to view my Holiday card in honor of those poor Chinese hamsters who lost their ovaries (and, I assume, their lives) as well as all on this board!
vBulletin® v3.8.7, Copyright ©2000-2024, vBulletin Solutions, Inc.