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04-08-2010, 03:10 PM
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#1
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Senior Member
Join Date: Jan 2010
Posts: 170
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Feedback please..
Just got my PET scan results after 8 weeks of Herceptin and Taxol, and glory be I am clear! Had hoped for good response, but this was way more than I had thought possible given my prior scan.
Here is my question:
Our plan is to now do 12 weeks/3 weeks Herceptin alone, scan and if still good, onc. says no more Herceptin, just regular scans until something pops up.
Does that sound scary to anyone, or is it just me.
He also said that he thinks given my good response, that I should do well for several years.
Hope everyone is enjoying Spring like we are finally in Denver.
Thanks to all,
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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04-08-2010, 03:22 PM
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#2
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Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
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Re: Feedback please..
Emelie-
I have bo advice on the treatments schedule but had to post ...
CONGRATULATIONS!
I literally WHOOPED when I read your words! Glory be is right. I am so happy for your clean scans!
Maureen
__________________
Maureen
My loves
IDC & DCIS, HER2+++ Diagnosis: October 1, 2008 - Tumor: 6.8 centimeters, never showed on mammograms
- ER-/PR-
- November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
- Stage IIIc
- Lapatinib Clinical Trial start: November, 2008
- Surgery: May 5, 2009
- Started Herceptin: May 19, 2009
- Started Radiation (33 rounds): June 10, 2009
- September 2009: Moved to Michigan to be closer to family
- 12/09 - still on Herceptin until May 2010
- August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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04-08-2010, 03:31 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Feedback please..
Fabulous news, Emilie! Cancer, shmancer, huh?
I will offer that having had stage IV liver mets myself, I would tend to want to stay on the Herceptin longer than your onc is suggesting.
I, too, had good response to my treatment, but did stay on the Herceptin monotherapy for many years after finding NED. Maybe I overdid it, but that was the recommendation at the time.
However, I would not want to feel undertreated, knowing that the cancer stem cells can still hide out. Maybe at least a year would be a better bet at eradicating any cells in blood or lymph that are not showing up as a group/tumor that shows on a scan.
__________________
"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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04-08-2010, 03:36 PM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Feedback please..
Go out and celebrate !!!!!!!
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04-08-2010, 05:36 PM
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#5
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Feedback please..
Thanks for sharing this FANTASTIC news Emelie.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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04-08-2010, 06:15 PM
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#6
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: Feedback please..
Hi , Emilie, Great news :) I am NED and still on Herceptin.My onc said if it is working why change what we are doing. I have been on Herceptin for 1 1/2 years.
Wonderful news!!
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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04-08-2010, 07:40 PM
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#7
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Re: Feedback please..
Fantastic Emilie,
All the best,
Dawn
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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04-08-2010, 09:16 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Feedback please..
Emelie, That is fantastic news for just eight wks! I'm up doing the happy dance for you...way to go. Woo hoo. The only thing that I would personally change if it was me--I would want to continue on Herceptin especially since you have responded so well to this combo.
Did your onc give you a reason for wanting to only give you Herceptin for such a short time? Why would he want to stop that? I would not want to wait till something "pops up". Herceptin might be the one drug to keep you NED so you don't have to deal with this again. You could always get a 2nd opinion and see what another onc has to say about this? But that is great news---go out and celebrate. (It has to be your decision...but after you complete the 12 wks of Taxol...I would really think twice about staying on Herceptin.) Thanks for sharing such good news! 
Chelee
__________________
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.
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04-08-2010, 09:53 PM
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#9
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Feedback please..
If nothing else, you could ask about continuing the Zometa since it's fairly low in toxicity and keeps proving to have benefits outside of bones...seems to effect processes in marrow that alter the entire cancer landscape.
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04-09-2010, 02:36 AM
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#10
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Feedback please..
Hi Emelie
So very pleased to hear your news.This dilema about continuing herceptin seems to be raging here in the UK also. There seems to be a growing split in opinion. The first group seem to believe that stage 4 women should stay on herc long term and through recurrence. The second camp feels stay with herceptin (plus chemo) till NED then after a short further period have a break then watch and wait. The rationale for this is that it may prevent or delay resistence so if needed again it would be effective.
I think the problem is we don't have any long term research to back up which is the best way to go.
Cheers ellie
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04-09-2010, 05:07 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Feedback please..
Emelie
I am so happy that you have had such great results. I am not sure of what to do. On one hand, I think you should continue Herceptin and Zometa. In the past, Herceptin was continued indefinitely but many Stage 4 women are coming off of it after being on several years. Most of what we have seen (at least on this board) is that NED women stay on Herceptin many, many years. These women are now coming off of Herceptin.
However, Ellie's point about resistance is a good one should you need therapy again. You could choose a middle of the road. Discuss with your onc why he is choosing this protocol for you. You can also discuss that all you have known in the past (via the board) is that patients stay on indefinitely. Then you can discuss this wide difference. You may end up really and truly agreeing with your onc's rationale. Or you may come to a middle ground and conclude to go with 6+ months of continued Herceptin alone. If your bones are healed, you would not need Zometa indefinitely.
Keep us posted and a huge hug to you.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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04-09-2010, 06:37 AM
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#12
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Senior Member
Join Date: Jun 2009
Location: Mississippi
Posts: 253
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Re: Feedback please..
Oh Emilie. Thanks for posting. That is great news. I can't add any advice to what's already been offered by everone else but I am so happy for you! :-)
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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04-09-2010, 09:51 AM
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#13
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Feedback please..
Emelie,
Glad to hear your good news.
Amelia
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04-09-2010, 03:38 PM
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#14
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Feedback please..
So happy for your good news Emelie!!! xx
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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04-10-2010, 05:56 AM
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#15
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Senior Member
Join Date: Dec 2006
Posts: 415
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;)Re: Feedback please..
Congratulations! Celebrate!Celebrate! Celebrate!
Thanks for sharing such wonderful news with us.
Successful treatment for any one of us is a VICTORY for all of us!
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