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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 06-21-2011, 04:41 PM   #1
Junior Member
Join Date: Jun 2011
Posts: 1
Longtime her2 survivor -- no recurrance !

I just wanted to post a positive message to you ladies out there with the her2 receptor.
I found a lump in Oct 1998. After 2 surgeries, I was told that I had infiltrating ductal carcenoma with positive "her2/neu" receptor. At that time, my doctor said researchers had recently discovered this receptor and she did not know much about it at all. She tried to research it for me for more information with not much luck at all. All she could tell me was that it indicated a more aggressive and higher chance of recurrance breast cancer.
Long story short, I had radiation treatments (no chemo!!) for 7 weeks because there was no lymph node involvement, etc.
Keep your chin up and think positive and say "poo poo" to her2 !!!
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Old 10-24-2011, 04:42 AM   #2
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Join Date: Oct 2011
Location: Kingston, ON area
Posts: 12
Re: Longtime her2 survivor -- no recurrance !

Thank you so much for posting this. I was diagnosed this past May...it brings me a lot of hope that you have been 12 years free!
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Old 10-24-2011, 09:51 PM   #3
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Location: "Love never fails."
Posts: 5,635
Re: Longtime her2 survivor -- no recurrance !

Many of our members (including some that had experienced recurrence) replied to the following thread (Positive stories, please come out of the woods):


You can also locate the 'long-time survivor' and 'long-term survivor' using the 'Search' button on top right of the Board.

I would suggest new members to particularly pay attention to the recurrence issue so it can be prevented...

Erythema Nodosum 85
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13


Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 10-24-2011 at 09:58 PM..
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Old 10-25-2011, 05:31 AM   #4
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Re: Longtime her2 survivor -- no recurrance !

Wow, thanks for posting! You were so very lucky to have caught it before lymph involvement. And amazing that you conquered it with radiation. What a great achievement.
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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Old 10-25-2011, 08:09 AM   #5
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Posts: 3,292
Re: Longtime her2 survivor -- no recurrance !

Thanks so much for posting. It is wonderful to share the experience of a long time survivor that did not require the most aggressive possible treatment to get beyond Her2+ bc and thrive. You are giving hope to many.

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Old 10-25-2011, 10:29 AM   #6
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Posts: 3,143
Wink Re: Longtime her2 survivor -- no recurrance !

Congratulations !! I am glad you are doing well. You are very lucky.
You are right. Not much was known about her2 before 1998. If you get a chance rent the movie Living Proof. It tells the her2 story and how the drug Herceptin was developed. It is based upon the book The Making of Herceptin.
12 years and counting
Lucky 13 !! I hope so !!!!!!
14 Year Survivor
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 10-26-2011, 04:33 AM   #7
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Posts: 326
Re: Longtime her2 survivor -- no recurrance !

Wow what an amazing survival story. No herceptin, no chemo!Gives so many of us hope. Thank you for sharing the wonderful news. Check back in with us in another 12 years so we can all have something to look forward to. I hope we all can post such great encouraging news 12 years later. 11 years to go for me but who's counting. God bless. Darlene
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
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Old 10-26-2011, 08:39 AM   #8
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Location: I live in the Niagara Region, Canada.
Posts: 41
Re: Longtime her2 survivor -- no recurrance !

It is so very nice and reassuring to hear from other tata-sistas who share their successful stories of their journeys! As I am sure you all know for us newbies it is so beneficial to read about your lives before bc, after bc including the challenges. Thanks
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