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Old 04-30-2010, 02:03 PM   #21
schoolteacher
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Location: Georgia
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Re: What does this site mean to you?

This site has been my life line.
This site has helped me to find peace.
This site has given me information that I would not have had.
This site has given me friends that helped me through this journey.

In all, this site has given me HOPE.

Amelia
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Old 04-30-2010, 03:48 PM   #22
Sandra in GA
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Location: Moultrie, GA
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Re: What does this site mean to you?

This site is a place to learn - latest studies, research, treatments; you're not the only one
This site is a place to listen - to others' concerns, fears, hopes, and joy
This site is a place to share -hope, information, concerns, fears, and friendships
This site is place to give thanks, shed tears, receive inspiration, and pray for a cure!!

Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 05-15-2010, 02:18 PM   #23
Carol.hope
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Smile Re: What does this site mean to you?

I just sent my comments to the writer. Thought I'd share them here, too. I am so grateful for HER2 Support!

My surgical oncologist told me about HER2Support.org in June 2005. I was anxious to find people who had survived breast cancer, to hear success stories, and to know how they’d done it.

Christine’s name and telephone number were listed on the site, so I called her. I had always considered myself very healthy, and I did not like the idea of chemotherapy. Christine told me about her experience, and how thankful she was that she was able to get Herceptin. She was still alive 7 years after her stage 4 diagnosis, which was very unusual at that time, and she ascribed this to Herceptin. I learned more about Herceptin and decided that was the drug I wanted. Hearing about Christine’s success, directly from her, and her personal encouragement made a big difference in my outlook. And we all know that outlook can sometimes make a difference in outcome.


After I finished chemotherapy (after having to stop Herceptin because of heart problems), I was anxious to get my energy level and my brain’s abilities back. It was good to read research articles on HER2Support. I especially appreciated a member called R.B., who often wrote about omega-3 and omega-6 fats. I learned quite a bit from his articles and a book he recommended.

Seeing Christine take leadership in organizing this whole group, and participating in ASCO conventions, gave me great inspiration. Seeing women actively involved in enjoying life together as they dealt with the hardships of cancer was very hopeful.


Early on I enjoyed the camaraderie of the group, but when it was time for me to get back to life, I found I did not have enough energy or attention to participate much. After quite a break, my brain is doing well enough that I can now check in once in a while, and I always learn something interesting. When a member dies, it feels so sad. When others offer their support to frightened newcomers, or to those in long struggles, it is very touching.


Over the past year I have written a book about chemo brain injury, my experiences and recovery. The book refers several times to HER2Support.org, which is so helpful in many ways. I have great admiration and appreciation for Christine, for starting this, for Joe for all his work, and for the many people, men and women, who share their stories, talents, interests and empathy on HER2Support.

With much gratitude,
Carol Devenir
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Carol
Lyons, CO

dx June '05 at age 55
Stage 1, 1.5cm
ER+++, PR--, HER2+++
Lumpectomy, A/C, T/H
Herceptin stopped due to low LVEF (35%)
2010: NED, but continuing major chemo brain injury
www.BeyondChemoBrain.com
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Old 05-15-2010, 09:28 PM   #24
Barbara2
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Location: South Dakota.
Posts: 621
Re: What does this site mean to you?

Oh my. How to find words that will adequately describe what a website such as Her2support does for the emotional, physical, and mental well being of those of us with Her 2+ breast cancer? In a word, it is priceless.

When I first met with my onc (2002), he was explaining all kinds of things to me and my husband...it was all so new and hard to digest, but when he said the words "this type of cancer is more apt to come back" I totally froze and heard no more. Suddenly my "everything will be alright" attitude, turned to terror.

I am the type of person that asks a lot of questions, but I now had more questions than there were answers for so I went online in search of what this Her2+ breast cancer was all about. Thankfully I found this website, although in 2002 I believe it had a different name or address, I can't recall those details.

I quickly discovered that I had found the gold mine for all my questions, searches, and needs of all sorts. People in need of this website were all in the same boat with the same questions, fears, hopes, and dreams. It was our lifeline, and still is.

This site offers an assortment of information to its members and guests. The message board is wonderful but so is everything else...articles, trials, news, current research and so much more.

It really is hard to put into words just how much this website means to myself and so many others. Joe's gift to Christine turned into a gift for thousands more, and for that we are forever grateful.

Will send to ctaghdiri@yahoo.com
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.

Last edited by Barbara2; 05-15-2010 at 09:44 PM.. Reason: editing!
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