Lani's post re: Promising Study on Multiple brain mets...

[pattyz]

I'm not quite sure how this works, deciding what needs to be in which list... it was moved to the 'Trials' list, yet was a small study.

This study posted by Lani was a near duplicate of one reported at SABCS back in '04.

It is also about the two drugs that I have used with very good results for my new multiple recurrant brain mets: Temodar/Xeloda.

Is the moving a good plan so that information doesn't get lost in the shuffle?? That makes sense to me... always the need for making sense, unfortunately for me.

ramble ramble.....

[Joe]

Patty and others,

I have received several emails commenting on the disorganization of our message boards as well as postings on other message boards:

"Indeed, there was a need for a Her2 positive forum. I visited a few times the her2support.org but i found it - my personal oppinion- a bit chaotic, with copy+paste informations, and a disorganized forum. Was not very useful for me. I deeply appreciate and feel grateful for the fact of a site completely dedicated to Her2 support, but i think there is a lot of work to do."

We do take all criticism very seriously as we are striving for the best posible venue for women who are HER2 positive.

In view of this, I have several options:

1. To moderate all posts, ie: review them before they are posted. (I don't have the time)

2. Create more message boards like other online organizations do. (Adds to the confusion)

3.Move posts as I see fit. (What I have been doing)

The guidelines of each board is on our homepage, I ask all users to post within these general guidelines. We are also open to any suggestions such as adding boards, etc.

Note: Very rarely have I deleted any posts.

Regards
Joe

[SusanV]

Joe,

To each his/her own. I absolutley LOVE this board, have found it easy to use and move around in...Without it I would be lost. You are doing a GREAT Job ! I couldn't disagree more with the criticism

[Lani]

if something seems clearly like an article that few will be interested in or a specific person would be interested in eg RB or Rhonda H I post those under articles.

If there is important new research or results that I think many would want to know I post them on group and let Joe decide where to put them.

The same news reports eg "curing" melanoma last week seem to be put into articles when I try to quote the source and left on the group when they are reported anecdotally by others, which is fine.

I have never quite understood how the her2group heading differs from the rest...it just seems to be the main board read by most. As all have hectic lives and each has different reasons for reading the boards, I salute Joe for
trying to sort it all out and keep this board the wonderful resource that it is.

I am sorry if I make more work for him, but I should not be the one to decide where things should or should not go and I wouldn't want to be.

Thanks again Joe, for all your efforts.

[tousled1]

Joe,

I personally think you are doing a great job! I find this website truly a blessing. It has so much information and so many people who have experienced various treatments so you get information first hand. I would not add any more message boards. Maybe the person you got the suggestion from did not really understand the concept of threaded discussions. Keep up the good work!

[pattyz]

Joe,

I can't imagine for one moment the time consumption involved in keeping this site running..... boggles the mind.

I visit six different sites a day, one page/click each, to see what's the 'latest' bc related news. It is small stuff like this that I would miss without exploring the whole site...

But, you do what you need to do to stay on track and sane! If it's not broke, don't fix it, which seems to be the most general consenses of members after you've done such a great job here!

Best to you,
pattyz

[Adriana Mangus]

If some people don't understand how this program works,they can always ask any of us. Joe is doing a great job in running this wonderful site for all of us who have been diagnosed with cancer and tested HER2 positive. Let's don't attack anyone via email, we need to be civil to each other, one thing we all have in common is finding a cure for bc cancer, being informed of the latest medical advances and giving support to one another during treatment, fears, medical questions, etc. Start today.....be thankful for what you have. God Loves us all!!!

[Barbara H.]

I think this website is easy to navigate. Sometimes posts end up in the wrong section, but that does not seem to happen often. When it does, I have noticed that a member might suggest that it also be posted in another sectionin order for the sender to receive more replies.

Thanks Joe for all you do.
Barbara H.

[Joe]

If I ever find the time, I'd like to put up a RSS news feed on this website.

Any techhies wishing to help?

Regards
Joe