Changes Are Coming !!!! Need Input
 

We are now approaching 1,000 visitors a day and already have exceeded 3 1/2 million pageviews. We also have had a 40% increase of registered members in the last six months.

We are presently in the process of relocating from a shared server to an exclusive dedicated server. The relocation will be transparent and we expect our
website to be down for less than an hour. We will try to give as much notice as possible.

We will also do a major redesign of our website in order to make navigation much easier. I need input on what features that you wish to be included in our new website. The sky is the limit !!!

I will be including a RSS newsfeed where late breaking news will be automaticly posted on our website and am considering to include an "instant message" system on our message boards.

We are also in the process of retaining a medical resident student to interpret some of the many abstracts posted on our site into language that the average patient will understand. They will also explain what impact that the abstract will have on the patient and most important a timeline on when the research will be developed.

Remember this is YOUR website.


Warmest Regards
Joe

Joe,

I am one of the "neu" newcomers to your fabulous website, as I was just diagnosed at the end of October 2006. I cannot begin to tell you how valuable and comforting the website has been for me.
I also love the idea of having a medical student onboard to interpret for us - and the late breaking news feature, especially any updates on Her 2 neu positive breast cancer, would be great. I don't know how you can improve on your already terrific website.

Best regards from
Caya in Canada

Whoo hoo
 

Hi Joe,

Wow, very exciting! I also welcome the addition of an "interpreter" - what a great thing for the board as well as a great opportunity for the resident med student to get up close and personal with the issues, research, and challenges posed to "regular" people trying to live with this!

I'll also think some more, but one thing I think would be helpful would be a FAQ page with the key stuff about Her2+++ bc, prognosis, stats, brain vigilance, Herceptin. chemo and herceptin side effects - the types of questions newcomers as well as old timers have again and again

Hope things are going well - and to paraphrase Billy Joel (and date myself!) don't go changin....we love you just the way you are!
Chris

Dear Joe,
Incredible news! Thanks for taking such good care of us!

Warm regards,marcia

Joe,

This is wonderful news! I'm amazed at the dedication and Christine put into this website. I know it's a lot of work and I just want to say thank you. I think having a medical student to translate into lay terms some of the articles is a great idea. You do such a wonderful job maintaining this site.

Joe, I am new to joining a discussion, just been lurking here for awhile. I have found this website so valuable to understanding my diagnosis and also for feeling like I am not alone. Thank you so much and also to those who have shared so much of there lives with me. I have learned so much and love the idea of a medical student to interpret the tough stuff for me.

Suggestion
 

Hi Joe:

Thanks so much for undertaking this major project.

My wish/suggestion is that the archived articles of interest were catalogued in some way so that we could search through them efficiently when looking for information. I am aware of the search tool that is useful.

But some people don't know what they are looking for. I am not sure how this would be done, but I do know that we have accumulated an amazing resource here. It would be great if we could maximize it.

Regards,
Merridith

Hi Joe!

The changes sound so exciting!!!! This site is like a second home for me, and I just can't imagine what it would be like without it. Thank you.

The medical resident is a WONDERFUL idea! I have a little medical background and still have much difficulty in understanding some of the abstracts. Is instant messanging going to be like a chat room/conversation area? I do miss this from a few of the cancer sites. It's a nice way to really get to know someone. Also, I always thought that it would be nice if there was a way to "catorgarize" dx's so that people might be able to easily find others with the same dx (er/pr -/+, node+, DCIS, etc.). Speaking for some of the newly dx'd patients, it would be nice to have an area where long term survivors could share hope for the future. I know that when I was first dx'd, it was almost impossible to find "positive" stories and I was convinced that I would not be here today. Also, how about a little "medical dictionary" that could explain some of the lingo, define certain procedures, etc.? Maybe another section on "helpful hints" to deal with chemo side effects, advice for procedures, etc?

I'm just rambing now. I am very excited about this. I just love this site so much and everyone here. THANK YOU!!!

Love, Kelly

WPW! is all I can say. All are GREAT ideas! As far as I'm concerned, you and Christine know best and I support you both with all my heart and thank you with it too.
Hope Christine is doing well.
Our thoughts are with you.
all the best
Sarah

Very exciting Joe. I love the idea of a medical intern. One of the things I love about this site is the continuous thread. My computer is so slow that I hate sites that I have to open each reply. It takes forever to read one thread. Thanks for all your hard work.

This is wonderful. With today's technology changing so fast I sure am this site will be kept updated. I would like to see spell check, perhaps, its here and I have not found it. I don't have any ideas at this time just want you to know I think this site is already great, and will look forward the new improvements. hugs, Sandy

Joe and Christine
 

Web changes
 

Joe: Thanks for your hard work . You are awesome!!! I think we need to have a day for you, it will be Joe's Day. What do you think about that ladies!!!

I am grateful to have found this site, the only thing that's been missing is the chat room. Some other cancer organization do have it and it's a great way of communicating with people all over the globe to exchange ideas regarding one's medical treatment, tips on how to deal with stress, nausea, etc...News on medical procedures, clinical trials and so forth. In the meantime let me think about what else we can benefit from? Thanks a lot!!!!!

Joe, you are one busy guy! First, thanks for your dedication. The only suggestion that springs to mind is a link to a downloadable file so we could print out brochures about the site to take to our onc's offices, as my nurses were asking for some the other day, for new patients. I'm taking them some pages I printed of the Home page in the meantime, and I know there used to be a link to an Adobe file for brochures, but I couldn't find it.
That's the only thing I can think of, but will add more if I come up with anythig :)

<3 Lolly

Joe,

I suggest you may want to establish some archive forums where you can locate the oldest threads. It will keep the current pages to a manageable level, and permit faster loading. I am impressed by the addition of a med student to interpret abstracts - that is totally first class. Thanks for all you and Christine do.

Hopeful

Joe,

You have indeed done a fantastic job and little can be added for improvement. We are all indebted to your heroic effort.

As to a chat room, I would like to comment that it frequently can turn into a small clique which consists of members knowing each other well. They enjoy talking to each other but the central meaning of helping cancer problems is very much eroded. An infrequent group meeting with qualified experts is more useful to serve our membership, I believe.

Thanks for your leadership.

To Lolly
 

Ask and you will receive !!! We had a .pdf file on our computer of a pamphlet that we distribute at various breast cancer meetings.

www.her2support.org/HER2.pdf



Warmest Regards
Joe

I would love a board that talks exclusively about treatments - by category and the comments people have on those treatments. It might be difficult to keep that up because so many are out there.... but just the HOTTEST new drugs and regular standards would be so cool.

Ex: AC+T, CT+H, Herceptin Alone....

The same idea with women who are in different stages with different types of cancer beasts...

Women DX under 30, 40, 50+?

Stage 1-4

ER+/PR-
ER+/PR+
ER-/PR-
ER-/PR+

Grade 1
Grade 2
Grade 3

I love what you have done for us. Some days it's all I can read to give me a little hope.

Search
 

All this sounds wonderful. Perhaps some instruction on how to use search and examples. I'm probably not the most savvy, but I have trouble knowing exactly how to "search" for what I am looking for. I'm not always certain what to enter.
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