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Old 04-26-2010, 09:24 AM   #14
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: What does this site mean to you?

Oh, don't get me going! You know how I run off at the mouth, with tears streaming down my face.

When I was initially diagnosed with Her2+ stage IV breast cancer I knew little other than I was now living under a death sentence. I had great doctors who had told me that there was a lot of research going on for "your type of cancer" and that there were treatments that could work well, maybe for quite a while.

I was guided to other support groups and online resources and although I found tiny snippets of hope, these places were not, for me, so supportive - and frequently left me even more depressed and hopeless.

I stumbled onto the Her2support.org site via a link on Dr. Susan Love's website. Although I did not register or post for over 8 months, this site quickly became my lifeline.

At first, I mainly scoured for information - and Her2support.org became my gateway to the most current and exciting research about Her2+ cancer. What I valued most was that what was posted here was real, "credible" research - not just a bunch of people pooling their ignorance and bad attitudes. I didn't care that some of it was just in mice, or even in petri dishes - there were rays of hope that threatened to burst into sunny days and a future that I might live to see.

I was grateful for the people who shared these articles - like Lani, R.B., Becky and others - with just enough translation to english to excite my imagination. Who knew I would eventually become a person who would learn to use words like antiangiogenic and antibody drug conjugate in sentences and actually understand what I was saying? These people helped me bridge the chasm of my ignorance.

Later I began to engage more within the "support" areas of the forums - again, searching for hope in the people who like me were fighting advanced disease. I found hope, encouragement, and strength in what the people here shared. And always respect and appreciation for each other - which is not as common as you would think in online "support" groups! Her2support.org was the only place I ever felt safe enough to contribute - and actually it is still the only place I am registered and post. It was many months before I felt qualified to "say" anything - which was compounded by my circumstance of being a nightmare Stage 0 gone bad. But I even found others in a similar boat!

This is my family. I love Joe and Christine, and all of my brothers and sisters here. Especially those who are able to find the strength and courage to hang around long after they are cured.

I appreciate being allowed to feel welcomed among the newly diagnosed and soon to be cured majority - welcomed, not cast out into the "dying people only" groups. I love the friends I have met here and that we see each other as whole people who are living with/fighting a disease - not people who are defined strictly and exclusively by that circumstance.

Joe and Christine have opened their living room (albeit in cyberspace) to us - and it is a place of hope, respect, friendship, encouragement, laughter, love and - most especially - living.

Love and kisses to all...
chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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