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05-06-2007, 08:07 PM
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#1
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Member
Join Date: Nov 2005
Location: Australia
Posts: 19
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Suspending Herceptin
Jan 2001. Bilateral mastectomy (BC in both breasts); 11/18 Ax Lymph RHS + 8 Ax Lymph LHS; portacath in situ. Chemo + Rad then Arimidex on completion. In remission until:
Aug 2003. Mets to bone in spine and pelvic, HER2+. Taxotere, Zometa, Herceptin treatment. Now stabilized.
I've been on Herceptin over 3 years now and because my scans and tumour markers have been stabilized for 2years, I'm being asked if I had considered coming off it - possibly to 'wait and see'! Presently my family is saying no but after further scans that still say that all is stable, I am now considering my oncologist's suggestion.
Is there anyone else in a similar situation? As yet in Australia, I don't know of anyone or anywhere else for that matter!
We visited UK in 2004 and I took my Herceptin with me. I was asked how long did I think I needed to continue with Herceptin, perhaps they thought I might know something they didn't!
I know if I did agree, I would like to be monitored very closely, but I would value others' opinions.
Barb
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05-06-2007, 08:48 PM
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#2
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Barb,
I was dx'ed in 1999 at stage IV and have benn receiving Herceptin since August 1999. My pathology report showed that I was HER2 3+ "very highly positive" were the words they used. I had the IHC test as FISH was not yet available.
Last year at ASCO and San Antonio, I questioned several leading researchers about discontinuing or lowering my dose of Herceptin due to the fact that I was highly positive and had no recurrances other than CNS tumors. Although they all said that my theory was interesting, they also said that there are no studies that would support this. They all said CONTINUE HERCEPTIN.
On my own, I started receiving Herceptin every 4 weeks instead of every 3 weeks. This past January I was diagnosed with a <1 cm brain tumor. I was treated with Gamma Knife and am now back on the three week cycle. I do not know if the tumor was related to this.
I would suggest to stay on Herceptin.
Hugs
Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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05-07-2007, 03:13 PM
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#3
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Barb, I've had "only" mets to local, regional and distant lymph nodes, but have been on Herceptin since 2001, with no "Herceptin Holiday". At times I've been in remission, at times stable, but always on Herceptin. Now that I've showed progression within the same "field" of mets, I've dropped Herceptin and moved onto Tykerb.
I believe I've not experienced more serious mets because my onc acted quickly to start me on Herceptin at the first sign of activity after primary treatment was finished, and also believe Herceptin has served me well to keep my disease contained all these years.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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05-10-2007, 10:28 AM
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#4
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Hi Barb,
I have been struggling with the notion of taking a Herceptin break too. We monitor my CA15-3 and CEA every 3 weeks when I get my Herceptin. My tumor markers have gone above the normal mark a few times, but there has never been anything seen on scans other than the small brain tumor I had Gamma Knifed in 2005. At times I struggle with my energy levels and think that maybe a Herceptin break would give me a boost.
After reading Christine's reply, I really feel I should just leave well enough alone for now. Had a Muga scan yesterday and still waiting for results. So far, I've been very lucky not to have had any heart issues.
We just have to face up to the fact that we are PIONEERS!
Kim in CA
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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05-10-2007, 11:38 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Hello Ladies of Herceptin,
Although I was dx'd with Stage l, I still struggle with the fact that I discountinued Herceptin after a year (Sept 2006). My scans were all clean, but the chances of a recurrance still cloud my mind... I wonder if I should have stayed on it even when there are no mets...
Any thoughts ?
maria (MTS)
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05-10-2007, 12:13 PM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Hi Maria,
I don't think you should worry too much, as you did receive the "Gold Standard" in regards to early stage Her2+. Many of us who've recurred didn't receive Herceptin for early stage as it wasn't approved for that use when we were diagnosed, so unfortunately had to wait for recurrence...
If you want to be proactive in keeping recurrence on the back burner of your mind, keep an eye on the Her2 Vaccine Trials, some of them are moving into later phases and may allow early stage volunteers to enroll.
Hope this helps!
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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05-10-2007, 12:42 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Thank you Lolly.
maria
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