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05-18-2014, 08:47 AM
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#1
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Senior Member
Join Date: Feb 2012
Posts: 25
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No Herceptin
Has anyone for whatever reason not taken Herceptin and still cancer-free and if so, how long has it been?
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05-18-2014, 11:35 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: No Herceptin
As a stage 1 HER2+++ I was diagnosed before trastuzumab was available other than off-label while the trial was still in progress. I didn't know anything about trastuzumab at the time but did request to participate in clinical trials for HER2 positive bc. My onc failed to mention the trial to me, or to help me with accessing information about possible clinical trials myself. I instead had CAFx6, rads, and a brief run of tamoxifen but no trastuzumab, no taxane, and no AI. I have so far not recurred.
Because it is now standard treatment for most HER2 positive patients, we don't know what the percentage is who would be like me, or which patients they might be.
There are others here who have also posted over time who did not receive trastuzumab.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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05-18-2014, 01:42 PM
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#3
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: No Herceptin
Hi Alaska,
Herceptin was approved in 1998 maybe earlier than your diagnosis in 2002,
perhaps your doctor did not mention it to you. I see you are Hormone receptor positive as well as Her2+. Lucky you-- haven't had a recurrence since.
You can always ask to be placed on a 6month to a one year herceptin only therapy, just in case.
Take care,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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05-18-2014, 01:54 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: No Herceptin
Herceptin wasn't approved for early stage until 2005. I was diagnosed in march 2005, before it was approved and by the time I was starting Taxol that summer, it had been approved.
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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05-18-2014, 05:29 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: No Herceptin
Yes...I too was diagnosed in May 2005. I received herceptin for the first 7 months "off label"" because it had not yet been FDA approved for use in early stage. I also had to do chemo , adriamyacin/cytoxan before I could get herceptin. part way through my herceptin year the FDA approved it for early stage.
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![](signaturepics/sigpic159_1.gif) 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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05-18-2014, 05:30 PM
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#6
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: No Herceptin
As I was diagnosed late 2000, Herceptin was not available to me as I was early stage. (Here in Australia, it was only available to those who were Stage IV). I developed Stage IV in October 2007, and have been on Herceptin ever since, with the chemo thrown in from time to time.
Barbiecorn, I can't see your background in your signature, but curious as to why you are asking.
Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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05-18-2014, 06:09 PM
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#7
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Senior Member
Join Date: Feb 2012
Posts: 25
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Re: No Herceptin
I am asking as I did not take herceptin due to health/heart issues and I was HER2+ (mid-range) - I had bilateral mascectomy and change in diet, supplements, juicing, etc. I am two years out from surgery and was just wondering if anyone else did not take herceptin but are still NED. Thank you for your responses.
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05-18-2014, 07:45 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: No Herceptin
Hi Adriana, 1998 may have been when trastuzumab was approved for use for those in the clinical trials. It was approved for adjuvant use in 2005, but otherwise some got it without being in a clinical trial by having an onc Rx it "off-label". I was over 2 years out from CAFx6 when it was approved for adjuvant use and I asked my onc about it. He said he would give it to me if I wanted, but that he did not believe I would get any benefit from it. I chose to skip it, and it appears he was right about that.
Barbiecorn, It is good to see you post. There are others here who are just about as far out from treatment as I am who also didn't receive it, but who may not visit often now that they are farther out from dx and tx.
A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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05-19-2014, 06:22 AM
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#9
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Senior Member
Join Date: Feb 2012
Posts: 25
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Re: No Herceptin
So glad to hear this positive posting...not having taken Herceptin and having the HER2+ in my breast cancer has concerned me but I do feel good that some of us are still okay even without Herceptin...I know it is a daily concern once we have had a breast cancer diagnosis...but it is something we sisters must live with...I try to live each day to the fullest and hope for the best and take care of my body to keep it as healthy as possible...My well wishes to you all....
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