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Old 01-25-2011, 10:44 PM   #1
StephN
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Location: Misty woods of WA State
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Re: Sisters with Mets...should I stop Herceptin?
Dear Kim -
Good to see you back here asking the tough question. I think you were pondering going off Herceptin a year or so ago, but decided against it at that time.

All is still well with you, I am SO happy to see.

I have been off Herceptin for over 2 years now. Just had scans and blood work 2 weeks ago and got a good report - all is boringly normal.

Please let us know what Dr. Disis says and how the appt at Sloan goes. I have met a couple of other women "like me" - meaning dx close to same time and recurred quickly, got to NED on Herceptin and finally went off. It seems like 7-8 years is getting to be a common number.

Cyberhugs to you.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-26-2011, 01:12 AM   #2
Chelee
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Re: Sisters with Mets...should I stop Herceptin?
Kim,
Lots of good feedback here and I know the 2nd opinion will help. Elaine's idea of spreading out the Herceptin might be another good option till you decide what you want to do? I know Jhandley (Jackie) would spread her infusions out to 4 or 5 wks at a time due to the long drive for Vit H. For those ladies that might run across this thread at a later date, I just wanted to clear one thing up. Jhandley (Jackie) was on Herceptin for 4 yrs when she stopped it & had a recurrence...not just the 18 months that was mentioned. I checked her old posts. So Jackie did stay NED the 4 yrs she was on Herceptin...and recurred 7 months after stopping it. She hadn't hit that 5 yr mark some of our onc's talk about...but close to it.

However Steph, Andi and Christine had been on herceptin much longer then Jackie when they stopped Herceptin. They all passed that 5 yr mark and more. I know it can't be an easy decision..but I wish you luck with your 2nd opinion at Sloan, and Dr. Disis...at least you can take your time to decide...it helps when your not in a hurry. Here's to yrs of continued NED.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
Last edited by Chelee; 01-26-2011 at 01:15 AM..
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