HER2 Support Group Survey

Joe · 03-10-2006, 07:44 PM

In order to maximize our efforts, The HER2 Support Group is conducting a survey to determine how all of you "discovered" our site.

Thank you,
Joe

Webmaster

Jade · 03-11-2006, 12:20 AM

What a welcome and necessary resource for all of us in the "HER2 Club". I responded to the survey as "other" but wanted to let you know I heard about the site from a fellow chemo patient while undergoing treatment; she's also a member.
Best regards,

sarah · 03-11-2006, 11:33 AM

while it's great that so many people found you surfing the net, it would be better if chemotherapy departments gave the information out with the first dose of Herceptin because you are so helpful and important to all of us and everyone with HER2 should know about you.
sarah

RobinP · 03-11-2006, 12:39 PM

Referral from Susan Love's site.

StephN · 03-11-2006, 12:54 PM

Referral from an oncologist you met your first time in San Antonio at the Breast Cancer Symposuim. She was impressed with you even in the early days of the site - when it was just a budding branch on this large "family tree."

TriciaK · 03-11-2006, 04:25 PM

Dear Joe, I put "oncology nurse" because it seems most likely, but I am not actually sure where I first heard of this website! Maybe I dreamed about it! I think it must have been either a nurse or my nurse-practicioner, though. All I know for sure is that I am so glad I did find it and I tell everyone else about it! I am going to put a little poster at my chemo lab so no one misses out. Thnk you so much!!! Hugs, Tricia

Lyn · 03-12-2006, 05:56 AM

I was first e-mailed the drug name Herceptin from a lady in Scotland who had been tested but not HER2+ and yet our symptoms and diagnosis was the same. I lost touch after a while withher, I guess I didn't fit into her category anymore so she stopped exchanging info, a bit like I don't want to play with you anymore and I could sense it in her tone. Anyway she came from Scotland and her e-name was Koly, I will always be eternally gratefull to her and for all of the knowledge I have gained from finding Christine & Joe with this very warm and caring Herceptin Support Site, that was many moons and sunshines ago now, I have come across a few other sites but nothing like the info we have gathered here, to other sites we are a drug that is of no use to them or didn't work for them and we get dismissed in their next lot of banter, where here if someone has asked us something in the past and we haven't had an answer we know we can go back in and fill in any blanks we can and we have managed to patch some up. I am off to the rads onc tomorrow so I will let you all know what his decision will be, or should I say our decision, still starting Gemzar/Txl/Herceptin/Zometa Tuesday in the mean time my pain meds are Ok, good thing they are, my Ron (better half) now has a worse tooth ache than the one he went to the dentist with in the firs place on Thursday, so I have to sort him out in the morning before we can do anything, and arrange for my daughter to have a filling in her wisdom tooth as well, our jobs will always be here for us, stay well everyone, they need us. And for those our readers, the shy, the lurkers too nervous to ask, and that is why you can remain anonomous for as long as you feel comfortable, and for those that want to stay inoformed of the latest, it seems that other cancer are now a bigger doom and gloom than BC, so we are must be making steady progress. Ask away as many times as you like, when we feel dumb for asking, we then blame it on Chemo Brain, and it works everytime, there is always some one new viewing, or joining who may be desperately wanting to know the same answers and needs the reassurances we hope to be able to give as well as input that they may not have found relevant to mention, but WOW! we already know more than our Oncs so they need our help as well. On this site everyone is welcome we have a very open mind to all input, and don't worry about the spelling or the way you right it, we will keep probing until you get a satisfying answer so we can make you feel as though you are welcome and fit in. I have been on other sites in the beginning and you just know and feel that those people are only into themselves and don't really want to let the rest of the world in on their journey and I have actually felt as though I was intruding, NOT HERE, not on this site.

And I did hurt myself when I fell out of the car on Thursday, I think very low blood pressure and maybe still dehydrated, I didn't realise before because my feet and toes are numb in some spots, I had taken the skin off the knuckle of my little left toe, I was in the shower when I eventually foud out, and the little toe on my other foot resembles a black jelly bean, can't rule out fracture either , and now with a missing big toe nail, there goes the toe nail polish, also can't rule out refracturing my left shoulder from fall on ship either, I am treating pain there again as well, talk about "Never Ending Story". "My family has noticed I am on steroids again, I can't shut up, I talk real fast, they are having trouble keeping up with me and what topic I am on, so that is where I am at, blame it on the steroids.

Lyn & hugs to all.

tousled1 · 03-12-2006, 06:21 AM

In reply to Sarah's comment that this site should be given to everyone upon their first dose of herceptin -- I think that this site should be given to everyone upon initial diagnosis of HER2 positive. I myself have not yet reached the point of receiving herceptin am HER+ and I have found this site to have a wealth of information.

SherriT · 03-12-2006, 11:23 PM

I couldn't agree with Kate more--that this website should be given to anyone newly diagnosed as HER2. I learn something every time I look at this site. Thank you to everyone for their assistance on this wicked learning curve that I am on.

DeborahNC · 03-13-2006, 06:09 AM

Joe,

I received a rec. from a member here who saw my post on another BC site.

Thanks to you and Christine for all your efforts.

With admiration, Deborah in NC

StephN · 03-14-2006, 01:57 PM

Hi -
I see the number of page views far exceeds the number of votes.
Maybe because people like me check the poll each day to see how the results are coming out!

katcdale@yahoo.com · 03-19-2006, 11:52 AM

Trying to get the Hang of how to even POST-but thankful I found this site through Genetech. I take 8mg IV per 3 wks. I am given Benedryl IV and 2 tylenols before the Herceptin.

Alice · 03-31-2006, 04:33 PM

Joe,

My reply was in the surfing catagory. I just wanted you to know the reason I continue to come to this site as opposed to the others is the quality of information I get here. Also on some of the other sites it seems to become a pitty party, some healthy venting is usefull and good for everyone in the right quantities but there comes a point when it is just draining.Whenever I have opted to vent here there has always been someone here to pick me up and get me going on the right track again.I have also recomended this site when I have been on other sites.

Great job
Thanks, Alice

katcdale@yahoo.com · 04-02-2006, 02:34 PM

Joe,
What time is that forum on today/?, ????????? I am in Mississippi, closer to Greenwood, MS radio station-- but my husband has a Sirus Satalite..e-mail me, please. Thanks.
katcdale@yahoo.com
Kat in the delta

Pam Bellendir · 04-05-2006, 05:57 AM

I too found this site by surfing. While I trust my oncologist, I trust you guys even more. You are the ones who know what is going on with your bodies. Unless an oncologist has gone through this they really don't know. I am fortunate to have an oncology nurse who has had breast cancer as well as my gynecologist. I am sorry they had to go through this but I trust them as I do you all to listen to me. Thank you so much for your constant never ending maintenance to this site. God will continue to bless this site.

Thank you again for your diligence.

Her2nSue · 04-05-2006, 06:07 PM

Hi Joe,

Not sure if I replied to this before or not, but I found the site by looking up info on Herceptin and Her2Neu. It's been very helpful in reading questions and answers from everyone. I'm currently on herceptin and taxol. I read in one of the replies that they took flaxseed, B6, L-Glutenen to help with side affects of neuropathy in fingers and feet with the taxol. Checked with the onc. who found no problems with any of it interfering with the chemo, so started right away in taking them. My fingers and feet have been fine, no neuropathy and I'm in my 8th week with four more weekly treatments to go. Then onward with just herceptin once every 3 weeks for a year they say. Tally ho! Keeping my chin up.
Sue

lucky4x · 04-22-2006, 05:55 PM

Hi there.

I was surfing Dr.Love's Breast cancer site... there was a link there.

I was so happy to actually see a site related to Her2Nu gals like me.

Thanks!!

anne · 04-30-2006, 04:54 PM

Stupid question perhaps, but how do you participate and vote. Do you post and it counts towards the final? Sorry about being computer challenged!

MCS · 05-01-2006, 08:38 AM

THANK YOU for the survey

Maggie · 05-30-2006, 06:16 PM

Hi Joe,

I first heard about this board from AOL's breast cancer message board. I went there for a few months for some help when I was first diagnosed almost 2 years ago. They are great, knowlegable ladies.

When I first went to the Her2 board I was pretty scared. I didn't want to know too much about what HER2 was and meant. I was afraid of what I would read. I didn't ask my doctor anything, either.

I guess I've been here on this board now for about 6 months or more. I was ready to learn and educate myself, and I have! Thank you all!

My cancer center has a breast cancer nurse who see's every woman with BC and is with her during her first chemo. She is always available by phone to us, too. She is a wonderful lady and we all feel blessed to have her.

After I talked with my oncologist and the BC nurse, she is now giving the site to all HER2 women.

Thank you again, Joe, for all you do for us!

Maggie