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Old 04-28-2011, 10:52 AM   #1
krisvell
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Re: Sisters with Mets...should I stop Herceptin?
Hi Kim;
Just chiming in to wish you well on your summer off with Herceptin. What great news!
Hugs,
Kris......
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 04-28-2011, 11:42 AM   #2
StephN
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Wink Re: Sisters with Mets...should I stop Herceptin?
Hi Kim and Kim -

We have all walked a long time with this disease and been here to chat coast to coast about how we are and how we feel about that.

The question about Dr. Dang's response was "how long had those patients who recurred been NED on Herceptin?" Were they in OUR league, or are they a good comparison?

People stop taking their drugs for a variety of reasons, so such a very general answer leads to more questions.

Anyway, enjoy the summer away from your medical center, and focus on families and fresh air.
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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 04-28-2011, 04:26 PM   #3
Mary L
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Red face Re: Sisters with Mets...should I stop Herceptin?
So happy for both of you, I have done very well for 3 1/2 years and just had my scans run and everything was fine. I wish you both the best and hope you stay ned. Have a wonderful summer. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 09-22-2011, 12:17 PM   #4
EmaB
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Re: Sisters with Mets...should I stop Herceptin?
Hello, I am new to this thread. wanted to ask StephN, Mary L how are you doing as we are now in the end of Sept 2011. Are you still NED? I 'd love to hear from you as you are an inspiration to a lot of us here. Also, i haven't seen any more posts from christine the founder of her2, i just hope that she is doing well while she is off herceptin too. PLease let us know.
Thanks
Ema
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Old 09-25-2011, 08:38 AM   #5
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Re: Sisters with Mets...should I stop Herceptin?
Hello -StephN here,
I am traveling so just found this. My checkup in August could not find any trace of active cancer. It is now getting close 3 years since I have stopped Herceptin, and feel very well.

Christine is also doing well cancerwise, last I spoke to her. So, that makes two of us.

All the best.
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