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11-13-2012, 04:20 PM
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#1
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Member
Join Date: Nov 2012
Posts: 5
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Here we go again, need support!!!
I have read this site for may years. My story in a nutshell is:
1998 -DCIS, mast, not clear margins, radiation
2005 - other side masta and positive nodes, chemo, rads, er/pr+ HER2+ ; ACT/hercepting
2008 - hysterectomy, to finally stop shots, something small in ovary, too small to fuly path. Called it breast so I could go back on Herceptin. So abraxane/Herceptin (seems like something else but dont' remember.
2010 - one spot in rib; rib removed; been on Herceptin, zometa, faslodex since
1.5 weeks ago, pet showed a few spots in different places in bones; and two in liver. None larger than 1cm. liver biopsy, er is now neg. Waiting to find out on HER2.
SCARED!!!!! I'm a nervous nelly type anyway until I know a plan.
He said if HER2 still, then tykerb. If not, them chemo.
I know other bc survivors, but no one near this same situation.
I'm worried about how often the HER2 changes from pos to neg?
And need comfort and support that life goes on! You've all been inspirations to me for so long even though I only read your posts
Ball State Mom.
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11-13-2012, 04:43 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Here we go again, need support!!!
Maybe step 1 of your plan could be to get a 2nd opinion. Take both Dr.'s advice to think on and then you decide what sounds best for you. Once you have the plans, post them and let people who have had similiar treatment give you feedback. I'm sorry that you even have to put your mind on this. Hoping you find some peace about a plan quickly.
__________________
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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11-13-2012, 04:56 PM
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#3
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Member
Join Date: Nov 2012
Posts: 5
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Re: Here we go again, need support!!!
I forgot to say that I will be getting a second opinion from Dr.Kathy Miller at IU Med.
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11-13-2012, 05:51 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Here we go again, need support!!!
I don't have any advice as such except to say I'm glad you're getting another opinion and we're all here for you and sorry you have to face this!
__________________
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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11-13-2012, 08:35 PM
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#5
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Senior Member
Join Date: Mar 2012
Location: New York, new york
Posts: 73
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Re: Here we go again, need support!!!
I started tykerb along with Faslodex and herceptin for spots on my liver and bones, after herceptin and femara stopped working in may.....my tumor markers went down and pet scan was much better but now tumor markers are starting to creep up...scared too...don't know what is next.....
__________________
Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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11-14-2012, 06:23 AM
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#6
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Here we go again, need support!!!
Ladies, Please know that you are all in my prayers. Gods blessings to all.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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11-15-2012, 03:22 PM
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#7
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Here we go again, need support!!!
Quote:
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I'm worried about how often the HER2 changes from pos to neg?
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According to this recently published study, around 15% of the time: http://www.breastcancer.org/research-news/20120620
Best of luck to you with your new treatment plan,
Hopeful |
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11-16-2012, 03:04 PM
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#8
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Member
Join Date: Nov 2012
Posts: 5
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Re: Here we go again, need support!!!
Well now it's her2 neg; so start HavalenTuesday.
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11-16-2012, 03:44 PM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Here we go again, need support!!!
Hope you got to consult with Dr. Kathy Miller. Having heard her speak in San Antonio a couple of times, I can say I have a lot of respect for her.
Halaven has worked well for some of our members here. Most notable for quite a while for Jessica (JML).
Hope your next scans will have good news!
__________________
"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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11-16-2012, 04:03 PM
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#10
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Member
Join Date: Nov 2012
Posts: 5
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Re: Here we go again, need support!!!
They weren't able to get me into see her for about a months , but my Onc. talked with her and they agreed on two paths, with one being better, the Havalen. So we're going with that. Steph I have always been encouraged by your posts and history!
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11-20-2012, 12:51 AM
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#11
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Here we go again, need support!!!
I don't have any advice...just wanted to say Im sending lots of prayers and positive energy your way. Please keep us updated. Big hugs!!
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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11-22-2012, 07:43 PM
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#12
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Member
Join Date: Nov 2012
Posts: 5
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Re: Here we go again, need support!!!
Please remove me from the list of sisters; it is bothersome for me to be there. I appreciate your helpfulness though.
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