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

pattyz · 09-04-2006, 10:53 AM

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 · 09-04-2006, 11:13 AM

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 · 09-04-2006, 12:35 PM

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 · 09-04-2006, 01:37 PM

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 · 09-04-2006, 01:41 PM

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 · 09-04-2006, 06:17 PM

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 · 09-04-2006, 06:55 PM

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. · 09-04-2006, 07:37 PM

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 · 09-04-2006, 07:47 PM

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

chrislmelb · 09-05-2006, 03:12 AM

so obvisiouly i am no help.
Re posts, i always just log in and go to Quick Links and click on new posts. Then all the messages come from all over the boards.
I love this site and i don't visit any other boards. If I did i'd never leave this chair!
Take care all and keep up the good posts.
Christine

PS Pattyz, what are the sites you visit? Never can have too much info

pattyz · 09-05-2006, 08:59 AM

Chris,

I have mets, so my focus is on support and information in that area. I get my best info from this first site listed. There are actually two other sites I visit daily, but do to privacy (in one case) and low volume (one more) I didn't list them.

http://www.bcmets.org/

http://bca.ns.ca/forum/index.cgi

http://members3.boardhost.com/recurrence/

http://www.advancedbc.org/

This site is strictly for brain tumors, but has a 'Mets' folder that I contribute to:

http://forums.prospero.com/IRSA/messages

And ofcourse this site, where I gleen alot of info and contribute when I can...

Thanks for the quick links idea. I try to keep my time spent on line in the a.m. down to an hour and a half. Most days, I do ok. Then there are those butt-numbing days! lol!

pattyz

Carolyns · 09-05-2006, 11:51 AM

Joe,

I find the site easy to use and a godsend to me.

The site and your work on this site seem to be a labor of love and a calling. Words could never express the gratitude I feel for the vision and dedication needed to maintain this site / board and the cause. I find comfort and wisdom from the members and you.

Thanks for listening to the feedback and taking a constructive position to suggestions / comments.

Carolyn

Tom · 09-05-2006, 12:13 PM

Joe,

You have been doing an amazing job with this website. And it is no small task you are burdened with either. There is a lot of heavy duty technical information flying around here, and it takes a while to learn the terminology. With the search function, there is no reason to miss anything.

Personally, I think the site is just fine. I often visit three or more times a day so I don't miss anything. If you ever think that changes are needed, go for it, as you seem to have a good feel for it all.

We are all blessed to have found this site, and I will never forget the sense of hope and relief that welled through me when I discovered HER2support.org. Keep up the good work and ignore the outside criticism, as it is unwarranted.

Tom

lu ann · 09-05-2006, 01:17 PM

I have a suggestion that might only benefit me, so it's not that important for any one to change their writing habits. I just find it easier if long messages are broken up with double spacings between ideas. I find that I lose my place when trying to read a lengthy post, especially late at night when I'm sleepy. Not a big deal, though. Blessings, Lu Ann

KathyH · 09-05-2006, 02:10 PM

Hi Joe,

We've never met but I hope we will some day. I have not been registered very long but I already think of you all as my cyber-family. I find the message boards, etc., very organized and user-friendly. Thank you so much for your contribution to those of us who need this web site.

Thanks, Kathy

sarah · 09-06-2006, 02:59 AM

I'm addicted to this site!!! It's been of TREMENDOUS help to me with great advice - I'd be lost without it!

I've searched different subjects and like the highlighted word to help find the references. Actaully, having been on other forums, I like the way this one works.

If I feel badly about anything on this site, it's that I feel I take away a lot from it but becasue my knowledge is limited, I don't give enough back.

I just hope that those of you who take care of the site, never get so overwhelmed that you quit.
We need you desperately!
thanks for this wonderful site,
sarah

R.B. · 09-06-2006, 06:47 AM

Exellent site and I imagine a lot of work.

And you manage that on top of full time employment admirable.

If it is feasible etc I think and index page might be heplful for many - in effect a beginers search page - it would simply use to the search facility to gather posts - but would present topics by sections to save those that are paniced having to think to much., drugs (list of drugs), tests, treatments, diet, insurance etc

Also a much greater emphasis on the search facilty might be helpful. It took me a while to register it was there.

Hopefully once created the index would be relatively static, with new topics being added relatively infrequently. A later date if ever the resources were there an edited summary by section would probably be useful or link through to a site that does.

Thanks for your hard work

RB