Where have all the original "Her2Neuers" gone?

I was just goofing around today and decided to jump to page 99 on the Message Boards which went back to 2003. MANY of the names on there I no longer see (though there are a few). Unfortunately, I saw the passing of a few but, others just seemed to disappear. I guess that is why I find the internet so disheartening at times, I LOVE to hear the long time success stories but, after a while people stop posting and you don't know what happened to them. I know that many have gotten on with life and have gotten past breast cancer (can't wait until I'm there). I just wish there was a better way of keeping up with people...it's the long timers that give us "newbies" hope. God bless you all.

Hi there, I think I am one of the oldies, diagnosed in 1998 and was suppose to expire in 2000, good thing I don't take notice of use by dates. We should probably do a roll call as there may be a few just lurking and letting the newbies take off their training wheels because there has still been a lot of good advice over the past 3 years plus that I have been floating around. I think Joe and Christine may still stay in touch with our old friends. I have found that a lot of the ladies are becoming more confident in taking charge of their devil and when I read some of the posts I think to myself yep that covers it and doesn't need my input, but at the same time I am still looking for answers to get us out of this "Big C" club and into the Club of Life. If I can add more I do and some of the ladies know that I never seem to be out of treatment but I go off air at times and come back with the new info I have gained from that treatment. At times I feel like I am the worrier out front copping all the bullets from BC and hopefully I can make it a bit easier for those behind me so they don't have to have unnecessary treatments or side effects. Good song title, "Lets Hear it for the Girllllls", I think that is how it goes.

Love and Hugs Lyn

Ditto...very well said Lynn. I was dx'd in 2002 & over the past 3 years have gained so much information, guidance, wisdom, comfort, support, etc from the folks on this site. At this stage in the game, there are few suprises in my treatment & care & more often than not, I'm the one that's bringing NEW info to my oncs. Compared to the other BC sites I've visited, I think this group is the most educated about our care & the most vigilant advocates for ourselves! Bravo to us!

Prayers, Faith & Courage~

ps-still NED :)

I guess I would qualify as one of the long time Her2 neuers. Originally diagnosed in 97, recurrence to liver in 2001. I've been on Herceptin nonstop since 2001.

I don't post nearly as frequently as I used to, because I have found that the best therapy for me is to stay very active with my favorite hobby. I am truly addicted to horses! I have been in love with them since the very first time I saw one. I just turned 50 this year and have decided that I want to try endurance riding. I have mostly done just trail riding my whole life, but always had a secret desire to compete! For years I lived vicariously through my daughter's showing days, but now that she is married and no longer riding, I have decided to go for it!

I did my first endurance ride in June and it was quite a test for me, but I kept thinking, if Lance Armstrong can do what he has done, then I should be able to do this. I must say that having this disease has given me the courage to try things that I may have otherwise given up on.

When I am out in the woods with just my horse, it is a very spiritual experience for me and I am always recharged afterwards. I just got back from 3 days of horsecamping at Pt. Reyes, a beautiful National park on the Northern California coast, one week to the day, from my Gamma Knife surgery!

So if you don't hear from me for weeks or months at a time, you will know where I am!

As I have said many times before, I am always available by email to answer any questions regarding treatments, cause I've had everything from Stem Cell transplant to liver resection to vaccine trial etc!

So many of you have inspired me with your stories and I want to be there for you too!

Happy trails and bless you all, Kim

[StephN]

Hello there -
I am probably one of those "old timers" who have been putting in their 2 cents worth or asking the tough questions since the end of 2002 when this site was but a few months old. But I still post often.
One of the med oncs in my group had been to San Antonio and met Christine and Joe and was spreading the word on their site to Her2 pos patients. I was immediately hooked! There was such an outcry and plea for information on our collective diagnosis.

Been though mets to bones, big tumors in liver in 2002 and brain mets this Jan. But, I just keep going like the Energizer Bunny, as my Mom calls me.

So, you will continue to see me on this board, as I am still learning and feel I can still answer questions or concerns of others, as well as give an encouraging word now and then.

Rhonda, you brought up another question.... When was this website launched?

Anyway, I joined in here back in '03 or '04. Dunno if you'd call me an old timer, then??....

[Isabelle]

I am an old timer but relatively new on this website. I have had a surprisingly normal and full life for someone with such an aggressive form of breast cancer. I am tough, proactive and informed. I am on my third oncologist! So much of living well with cancer is mental. I feel great and normal despite all I have been through and wish to encourage anyone who is newly diagnosed, whatever stage you are. I know that being told you have cancer, even stage 0, is terrifying. If you are interested in my success story to date, it is below.

Originally diagnosed in 1999 at age 39, I was told that my breast cancer was "locally advanced," 20 nodes positive out of 36. I was really scared because all the doctors looked so grim when we talked. I participated in a trial that used the gold standard drugs of the time but in higher doses administered every other week. First 3 doses Adrimycin, then 3 of Taxol, then of Cytoxan. No one was talking about Herceptin back then and I am jealous of those who now get it right away.

In 2002, my breast cancer came back in my posterior ribs. Over almost 2 years, it spread, surprisingly slowly, to 1 tiny spot on my liver and what looked like a tiny lung nodule and more bone mets. Until this point, we had held off doing much beside hormonal treatments and ovary removal for two years so we wouldn't use up options too fast. Also, this was to preserve my quality of life.

February 2004 I started Herceptin and Navelbine weekly plus zometa for bones and all the cancer in my body was gone in less than a year. I got to lower the frequency of Herceptin and zometa to every three weeks.

February 2005 an MRI of my brain (inspired by this website) did show brain mets even though I was not having symptoms. I had Whole Brain Radiation for 20 days followed by Sterotactic Radiosurgery 2 months later. As of August 2005, my brain mets are all gone. I will add MRI of brain to my body scans every 3 months and continue on Herceptin and zometa every 3 weeks.


Isabelle in CT

Rhonda
I too am an old timer...I feel like this board if a best friend...diagnosed in 2002, IDC, 0.7 cm, node neg, ERPR-, Her2 3+, recurrence and stage IV 2003, on Herceptin ever since.
Hugs
Sheila

This website was my Christmas gift to Christine and went online on December 24th, 2001. It was originally her idea in the summer of 2001 after she was told that she was NED.

Her immediate instinct was to help other breast cancer patients. She envisioned a website where all of the information that she had researched from hundreds of websites could be accumulated at one location : www.her2support.org

To be honest, we never thought that it would grow to where we are today.

Compared to other breast cancer support groups, we have not lost many members at all. I can only count about 10. Others disappear for months and after you fear the worst, they suddenly pop up out of nowhere.

Some, like Lolam decide to get on with their lives after being NED for a period of time although she did return under different circumstances.

Hugs well wishes and THANK YOU ALL

Joe

[Lolly]

I've been visiting this site since August 2002, and mark that as one of my most positive milestones since being diagnosed in September '99. So I guess I'm an old timer too, and even though I sometimes get so busy with family stuff that I'm not "here" for a few days I'm always eager to jump back on board as soon as I can. I love the honesty and sharing and caring that is food for my soul. Thank you all!

<3
Lolly