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Old 12-28-2013, 09:55 PM   #1
Lani
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Join Date: Mar 2006
Posts: 4,778
whole new ballgame--her2+ Stage IVs

In 2005 prior to the release of the adjuvant herceptin data, when herceptin was
approved for Stage IVs only I remember listening to a nationally known oncologist speaking at a conference discussing combined vs sequential treatment with more than one agent for Stage IVs and whether or not to order studies looking for progression ( he has been on national committees who decide what tests are recommended/which turns out to mean may be reimbursed by insurance companies) saying of bc in general (but not excluding her2+ bc)
"these women are going to die in two years anyway so why…"

Here is a collection of data from several hospitals in France showing what a difference herceptin has made for Stage IVs:

Breast. 2013 Dec 21. pii: S0960-9776(13)00315-9. doi: 10.1016/j.breast.2013.12.003. [Epub ahead of print]
Long-term follow-up of patients with metastatic breast cancer treated by trastuzumab: Impact of institutions.
Fiteni F1, Villanueva C1, Bazan F1, Perrin S2, Chaigneau L1, Dobi E1, Montcuquet P1, Cals L1, Meneveau N1, Nerich V2, Limat S2, Pivot X3.
Author information

Abstract
PURPOSE:
Trastuzumab in Human Epidermal growth Receptor 2-positive (HER2+) metastatic breast cancer (MBC) was established as standard therapy since 2001. The objective of this study was to search for significant prognostic factors in patients with HER2+ MBC treated by trastuzumab taking into account the institution where the treatment was given.
PATIENTS & METHODS:
All patients with HER2+ MBC treated by trastuzumab between 2001 and 2010 in the 8 hospitals of Franche Comte region were analysed. Univariate and multivariate analysis were conducted to search for factors related to overall survival (OS).
RESULTS:
Among 1234 patients with MBC treated by chemotherapy between 2001 and 2010, 217 patients received trastuzumab. In this subset, the median age was 60 years, 8% and 38% had brain and liver metastases at first occurrence of MBC, 36% of, tumours were hormonal receptors positive. Patients were treated in 48% and 52% of cases in specialized and in general hospitals, respectively. The median OS length was 45.2 months (IQR 23.2-89.3 months). In univariate analysis the following factors were significantly related to favourable OS: inclusion in clinical trials, treatment in a specialized hospital, positive hormonal receptors status, age <50. In multivariate analysis remained significant: treatment in specialized hospital (aHR 0.78; 95%CI 0.64-0.94; p = 0.03) and age <50 (aHR 0.76; 95%CI 0.59-0.95; p = 0.02).
CONCLUSION:
Exposure to trastuzumab erases all established prognostic factors at the metastatic setting. The fact that patients treated in specialized hospitals presented a longer survival emphasizes the dramatic impact of this therapy and the relevance to optimize its use.
Copyright © 2013 Elsevier Ltd. All rights reserved.
KEYWORDS:
Breast cancer, Metastatic treatment, Trastuzumab

PMID: 24368024 [PubMed -
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Old 12-28-2013, 10:35 PM   #2
sassy
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Re: whole new ballgame--her2+ Stage IVs

"Exposure to trastuzumab erases all established prognostic factors at the metastatic setting."

Just wanted to say it again...........!!!!!!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 12-28-2013, 11:07 PM   #3
evlin75
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Re: whole new ballgame--her2+ Stage IVs

Herceptin was not available for the early diagnosed in 2003 so Susan did not receive it until the cancer metastasized to her hip making a hole - in less than two years of the first diagnoses of invasive ductal her2neu +++.
But now after all these years the same story about leptomeningeal involvement. They gave her 3 to 6 weeks in June of 2012. Family was not about to settle for that. We began researching immediately and found evidence some spinal cords cleared with Herceptin given directly into the spinal fluid. Her doctor agreed this was a chance and found the clinical trial in Chicago.
She had a ommaya put in the next day and then on the Chicago The ommaya became infected and had to be removed so they gave her the Herceptin lumbar puncture for a while.
To get the higher dose recommended for the best improvement we had to find a doctor willing to do it for her. That was accomplished and then a new ommaya was implanted for easier access and less discomfort. Possibly better perfusion. they also had to add a chemo for a while to shrink the growths.

So a new ball game here too. The expectation of a few weeks has gone to many weeks.
She is getting stronger and feeling better.

None of it has been an easy trip. Some very difficult days, but she enjoyed Christmas with her son. She is driving again and feeling stronger every day.
She finally agreed to the Abraxine for the swollen lymph nodes, lost her hair and bought a wig. She is a joy and we still have her.

Ev
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Old 12-29-2013, 04:55 AM   #4
Bunty
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Re: whole new ballgame--her2+ Stage IVs

and I'm going to say it again too...
"Exposure to trastuzumab erases all established prognostic factors at the metastatic setting."

I'm 'living' proof I'm grateful to report. Even though it would appear Herceptin has stopped working for me systemically, I believe, as it seems is shown in others, that Herceptin has some important work it is still doing for me.

Thanks Lani for reporting this.

Cheers Marie
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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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Old 12-29-2013, 07:09 AM   #5
sarah
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Posts: 1,648
Re: whole new ballgame--her2+ Stage IVs

in 1999 I asked for Herceptin and told them about what I had read but it was refused but it was only approved for the metatastic patients. So in 2004 I was a metatastic patient and got it. Luckily they have learnt that all HER2 get it.
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Old 12-31-2013, 11:50 AM   #6
Adriana Mangus
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Posts: 668
Re: whole new ballgame--her2+ Stage IVs

Hi Marie,

Welcome to the stage IV club. Glad to hear you are still benefiting from Herceptin. I'd like to quote Andi Barnett;
"the hell with the statistics"

Happy New Year! Health, Love and more clinical trial for us.

Love,

Adriana
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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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