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09-03-2009, 01:24 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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advice to stay on herceptin or not?
Hello,
I saw my onc and he said we should think about stopping herceptin in 6 months. Here in France it will be a mutual decision. I can stay on it for life if I want to. in fact he asked me if stopping worried me. The idea used to send me into a panic but i'm ok with the idea now.
my cancer has NEVER shown up on scans of any kind including a Petscan and MRI. the MRI showed some inflammation that was inconclusive. Only the biopsy showed that it had spread outside the breast.
so my questions:
1. Do I stay on herceptin - I have no ill effects from it
2. What are the best tests to see very small cancer? MRI, Petscan, Catscan. not clear on what each one does.
thanks
Sarah
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09-03-2009, 09:41 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: advice to stay on herceptin or not?
Hi Sarah! Good question...how long have you been on herceptin?
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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09-04-2009, 02:25 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: advice to stay on herceptin or not?
Hello,
thank you for answering. I'm a little disappointed that only one person answered.
I've been on Herceptin for 5 years and 5 months, starting March, 2004.
I notice that you only had 1 year of Herceptin but your cancer was stage 1 so that's normal. I was stage 1 in 1999 and not given Herceptin for that reason. 2004 I had a recurrence and it had spread outside the breast so I was put on Herceptin with the possibility of being on it for life.
thanks Suzan and wish you continued NEDism!
sarah
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09-04-2009, 04:26 AM
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#4
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: advice to stay on herceptin or not?
Hi Sarah
Sorry I have only just seen your post. When I had my recurrence my onc here in England said I would need to stay on it for at least 10 years if I was lucky that it kept me NED.He based this on the fact that there are often circulating tumour cells in the body years after the original diagnosis. Hope this helps.
Ellie
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09-04-2009, 04:30 AM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: advice to stay on herceptin or not?
Sarah
I was told as a metastatic BC patient as you are, I will be on it indefinately, until it quits working, or possibly if I could ever reach NED. There are a few on the board who have been NED for some time and have taken a break. Steph is one, Christine the founder, Andi BB is another....I have been on it since 2003...still getting it.
Hope this helps.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-04-2009, 10:44 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: advice to stay on herceptin or not?
thanks Ellie and Sheila for your input. Did you stay on an AI also?
I wouldn't mind taking a break but worry that if I took one, I wouldn't get back on it.
I really appreciate the opinions and this website.
thanks and stay NED
hugs and love
sarah
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09-04-2009, 11:51 AM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: advice to stay on herceptin or not?
Dear Sarah -
Congrats on long-term NED!
Have not had the time to catch all the posts here lately! Maybe that is a good sign that my life is not so keyed in as a "cancer patient" since I am off my Herceptin for more than 9 months now.
You ask a very valid and important question. There are a couple of threads about this very subject - one was started by Mamacz and one by AndiBB. There are some answers and rationale in those posts.
You may not be getting many responses due to everyone busy with back-to-school, Labor Day doings, gardens, etc. I just had a housefull for about 3 weeks myself!
Here is a link to some discussion on your question.
http://her2support.org/vbulletin/sho...ight=Herceptin
__________________
"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.
Last edited by StephN; 09-04-2009 at 11:56 AM..
Reason: add link
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09-07-2009, 09:17 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: advice to stay on herceptin or not?
thanks stephanie, i'll check it out.
sarah
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10-03-2009, 11:34 AM
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#9
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Junior Member
Join Date: Oct 2009
Location: Ks.
Posts: 1
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Re: advice to stay on herceptin or not?
what ? what ? my doctor did not say any thing about how long . I am stage 2. What do I need to know.
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10-03-2009, 01:24 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: advice to stay on herceptin or not?
Hi! I am/was stage 2 and fought to have 2 years of herceptin. I still believe I needed every single dose. But who knows? I am so grateful to have gotten it though. ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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10-03-2009, 01:29 PM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: advice to stay on herceptin or not?
Hey Sarah -
How is it going? Did you come to a decision? I don't know if you found the answer to your questions regarding scanning for best view of any cancer. My understanding is that a PET/CT is the best since the CT will identify tumors or tumor-like places and the PET will identify at the same time whether those spots have any uptake of the radioactive tracer that is given.
So, you may have a spot, but it could be another type of nodule, but the PET will show if there is abnormal cellular activity or not.
Gentry -
This thread is regarding STAGE IV people who did not get Herceptin as part of first line treatment since we were diagnosed before that was any FDA approval for use of Herceptin other than treating metastatic patients. We got Herceptin as a treatment for advancing disease and that is why we have been on it long term.
I am sure you will be fine with the year given to patients now.
__________________
"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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