The Need To Participate

[imported_Joe]

The HER2 Support Group was envisioned as a place for women who overexpressed the HER2/neu gene to meet and exchange information, post thier concerns, ask questions and help others.

The success of our group depends on everyone's participation. To me seeing a post with only 2 or 3 replies, but having been viewed over 200 times is alarming.

We have taking great effort to protect the privacy of everyone on this board. We do not validate any of the information submitted when you register and have even set up a guest account for those who wish to remain anynomynous:

Username: Guest
Password: Guest

We are not concerned with knowing who you are, but only with what you can contribute to help others and how others can help you.

Warmest Regards
Joe

[Cindi]

Joe,

You make a good point. The times that I do NOT reply to some of the questions from fellow BC Survivors are often when I have been away from the board for a few days.

So, I like to "catch up" with current questions/news, but feel that if I reply the person who asked the question very likely will not view my answer because I looked at it several days after she/he posted the question.

I will also admit that sometimes I am complacent and am unsure that anything I might have to add to the post hasn't already been said by the previous responses (some of which are excellent replies). I think too that the concern of "passing on incorrect info." worries me too. I don't like to think that a reply that I would post would generate other negative replies, if I happen to be incorrect. This has happened in the past. Hopefully we have all moved past that. I myself, will try to be more helpful to those posting questions. Thanks for the "gentle reminder" of what we are here for.

Peace to you and Christine during the Holiday season.

Cindi.

[Janelle]

Joe,
I've also noticed the lack of posting since the new boards were installed.. but I'm hoping that it's just everyone getting use to the new format. I know that I really need to hear from the WBR gals and the Decadron experiences to help me thru this phase of my journey.... but I understand. I do get frustrated when I see a post w/ over a 100 peeks but no reply.. I wonder if the poster is discouraged at the lack of responses.

This will come together and we will get the hang of it... it just might take time.

Hugs,
janelle

[*_Joe_*]

Janelle and others,

I am not singeling anyone out. But we wish to take a team approach to
website and it is unfair to others to leave all the posting up to them.

Besides there is not always a single answer to any problem and sometimes it is better to get several views.

Cindi, when someone is posting a topic, I would suggest that they go to "Options" and click the box that will email them all of the replies to their post. This is a handy feature that we had on our original message board that is now a prt of this one.

We will be ridding the message boards of all of the clutter next week. We now work through a professional web designer. I talked to him yesterday and discussed the changes necessary.

The reason that this board was chosen was that we were able to import our old database of over 12,000 posts and replies. The database was very valuable and we did not want over a year's postings to be lost.

Has any one used the search function yet? Try it, you will be impressed.

Warmest Regards
Joe

[Janelle]

Joe,
I've used the search function and it's wonderful.... hope that more will use it...

hugs,
janelle

[tennischik]

I have not posted much. I was stage II for 2 1/2 years and recently found lung and brain mets. I am sad right now.
Mickey

[Alicia]

Mickey,
I am sorry to hear that you have mets. But keep the faith you can fight through this. I am working through brain mets now myself as are quite a few of us. Yes it is very scary but you can get trough it. Best wishes Alicia

[al from canada]

Hi Joe,
I know some of the hesitation has been the new Board, which no doubt is 100% better than the old one, another reason.. ..the time of year. I think everyone is busier.
One thing however: I agree that when someone posts and is in obvious distress we should rally the troops and give her as much support as we can. I know all of you have done it for Linda and I and it has made a tremendous difference for us. I personally will make an effort to stay involved and give back what was given to us.
Al

[Hope]

Hi Joe, Hey, I totally agree with you. I love this website, but sometimes I can't read it every day and feel that if I respond to something 3 or 4 days old, the person that posted it, might not read it. But I will try to do better. Hey, this is also a test to see if I was able to respond to posts. Remember, I was having difficulties registering and replying to posts. I think I got the registration part down. Thanks to you. Now. let's see if you get this post. I'll also send you a separate e-mail just in case this doesn't go through.

[Lolly]

I'm amazed at the high number of "viewings", I think there are more people finding us now, but do agree we need more input. I think it's partly everyone being busy with holiday happenings. New Year's Resolution's anyone?
Love, Lolly

[Merridith]

I am still finding it frustrating that I can't reply to a reply within a posting string. It is impossible for a "dialogue" to take place. People can only reply to the first poster - nor can the original poster pose questions or thank the responders. Can you speak to the webmaster and see if they can create some more flexibility within the board?

Regards,
Merridith

[Cindi]

Thanks Joe.

I checked out the Options feature, down by "Add Reply" and if you are the originator of the post it is a wonderful feature.

I hope that lots of people will learn of the feature and try to use it. I know that I will.

I agree with some of the other BC survivors on this board in that learning to use this new web site can be difficult at times. Change always is. The old board was what we were used to. It will just take time.

Cindi.

[susie]

This site has the potential to help us so much! I have been trying to get a good discussion on ovary removal, the whys, wherefores , side-effects, ect. for some time now. I am not looking so much for opinions, but both experience and leads about research. Also, regarding Her2, er-pr+ and the use of hormonals. We can be suppotive but a group with some answers too. I am reminded of a woman that I and another woman met in the doctors office last week. She had neuropathy and another woman said, "ask your doc about magnesium IV's. That has helped me so much." The woman replied, "but wouldn't he have given that to me if it were any good"? "Wouldn't he know about it?" To which we replied, "he's too busy to be thinking about your case 24/7, take it into your own hands and ask him for it".

[Barbara H.]

Hi,
I am replying to Joe's request to post. Yes, I have been a lurker, and this website has been a great support to me. I was diagonsed in 1998 with 7 out of 9 lymph nodes, er,pr neg. her2 pos. I was given the standard treatment of ACT in a trial at the time. It came back this past spring with the 3 cm turmor on the prefrontal coretex. I also have it in the lungs, the liver, and skin mets. I had surgery to remove the tumor in May followed by focused radiation to the site. I opted out of whole brain radiation because by daughter was married this summer and I wanted to continue teaching my third graders this fall. My doctors are fine with my decision and I am followed closely with MRI's. So far everything as been OK. I have been on herceptin only since the summer and my tumor markers are now in the normal range with skin mets almost completely gone. I also feel well and haven't missed a day of school yet this year. My school community is wonderful and my students keep my spirits up. Since quality of life is important to me, I am not adding anything else at this time. I'm just keeping my fingers crossed that the herceptin will continue to work. At this time I am not being as aggresive as many of you are, but at least I am learning about options that I may have down the road, and I appreciate your sharing them. I am also interested about all the discussion about the vaccines.
Thank you for offering this website and thank you to those who are willing to share.
Barbara H.