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Newcomers Club / Welcome Wagon With the stellar results of the adjuvant clinical trials of Herceptin, we have had many newly diagnosed patients visiting the HER2 Support Group. This Forum is just for them to post. "Old Timers" should only answer existing posts, but not create new

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Old 01-25-2012, 05:32 AM   #1
Paula O
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Wanna talk about how you're feeling?

I did a quick search here on Courtney to see her picture and get to know her a bit as I don't know much about her, my fellow Her2 Positive "sista", going through such a terribly hard time. She looked healthy, pretty, and strong in her avitar, on a hike with her hair pulled back in a bandana. This is Courtney's sig line:

4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

Look at her last line. Oh, how I wish the future of NED to her and to all of us! As we pray and cheer her on in the hospital, so sick right now with brain mets, we feel the added very personal sadness of those who share the Her2 positive diagnosis. As I read of Trish's recent passing and saw the list of others before her and Courtney in the ICU struggling for life now, I find myself wondering if in the future I'll be on the path of the long term stage 4 survivors here, with those who do not respond to treatment and soon die, or on the road with those who even have no evidence of disease for years and years or what. I know every human being in the entire world is going to die someday--it's the when and the how that are not certain. I know that I'm fighting hard against this disease and want to live my life like I'm living fully and not like I'm in the process of dying.

I appreciate this forum and having a safe place for us to share the highs and lows of fighting Her2 positive breast cancer.

You guys want to talk about how we are feeling as we hear sad news like what Courtney is going through?


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Old 01-25-2012, 06:55 AM   #2
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Location: Pittsburgh, PA.
Posts: 71
Re: Wanna talk about how you're feeling?

After reading the post on Courtney then taking a look at her Caringbridge site it gave me so many emotions, sadness, fear, anxiety, etc. Although I am coming to the end of my treatment and everything has been successful for me, I look at stories like her and I am overwhelmed at what my future may hold. I know everyones cancer is different but I am in great fear on how this cancer can morph.

What we can take a way from Courtney's journey is her her example of courage, faith, strength and positive outlook. These are the best ways for us to combat this nasty disease and overcome our fears for the future.

Courtney is in my prayers along with everyone who is fighting today, tomorrow, and in the future.

11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
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Old 01-25-2012, 12:22 PM   #3
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Posts: 1,492
Re: Wanna talk about how you're feeling?

Let's focus on Christine, the founder of this site. Look at her history. She was so severely ill many times, but she made it, and not only did she make it, she is disease and drug free to the best of my knowledge. We have many, many long-term survivors and I believe as our drug arsenal gets better and better, we will have options and possibly even vaccines to eradicate the disease.
A few months ago, I posted a request to remember the lives of our lost and this is precisely why. Each one of us becomes important in some significant way here. This is evident by how rattled everyone feels right now by Courtney's plight. She has amazing doctors and something tells me she is going to pull through this. Still she is a piece of us, we know, we understand, we feel. She is us.
I don't know that life can ever be the same after a cancer diagnosis: not the carefree way we used to live.
Love & Light
World Trade Center Survivor (56th Floor/North Tower) 12 years and still just like yesterday;
Dxd: June 2010, liver mets. ER-/PR+10%; HER2+++. Euthyroid via RAI, June 2001.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Discontinue Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
June-October 2011: CEA in normal range. PET/CT stable; no new lesions.
November 2011: Progression in liver. Previous tumors remain eradicated.
Test Results on 09-093 Trial (scans every six weeks, bloodwork and infusions weekly):
December 2011: Begin trial: 09-093 Taxol, MCC-DM1 (T-DM1), Perjeta. Brain MRI: clear.
January 2012: NED. Liver mets: good riddance!
March 2012: NED. Taxol removed from regimen. Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June 2012: NED.
August 2012: NED.
September 2012: NED.
October 2012: NED.
November 2012: NED.
December 2012: 09-093 trial concluded; enter trial extension, 09-037. CT, Brain MRI, bone scan: clear. NED.
January 2013: NED.
March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: Met ablated, but major sloppy surgical mistake (major hemothorax: causing emergency thoracotomy, lung surgery, collapsed lung, chest tube, rib rearrangement, transfusion after 3.5 liter blood loss); operation incomplete; plan to begin Navelbine/Herceptin later in month.
July 26, 2013: One dose Navelbine/Herceptin; too early after combined surgeries. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: Begin Protocol #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Off the "customized drugs." Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin. Daughter of The Red Devil, dance! July: Progression. Got nothing out of it. Brain: NED. Will forego scans as we know CEA is an accurate marker.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements--these are tumor-busting, immune system boosters. Also taking glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gezmar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.

The Hotter The Battle, The Sweeter The Victory, Bob Marley
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