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Old 10-07-2009, 10:43 AM   #1
tricia keegan
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Question Herceptin four years later- any point???

Hi Everyone,

A lady I know has just found out she was wrongly diagnosed as her2 neg rather than positive and is four years out.
She has a new onc who suggested she take it now and obviously she's very undecided on whether it would help at this stage.
Any thoughts??
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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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Old 10-07-2009, 11:02 AM   #2
StephN
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Re: Herceptin four years later- any point???

Dear Tricia -
Wow, how did she find out she was wrongly diagnosed? Did the new onc have her slides retested?

With the new evidence coming out that Herceptin can go after dormant cells that are just lying in wait to activate perhaps years down the road, I think that if she can get Herceptin now she may stave off a recurrence or something later.

Has you friend asked her onc's reasoning for his suggestion that she take it? She should know that it is an easy drug on the body and side effects when taken alone are very minimal.
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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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Old 10-07-2009, 11:08 AM   #3
AlaskaAngel
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Re: Herceptin four years later- any point???

Hi Tricia,

As one who "missed out" by being "too far out from original treatment", I don't have an answer for you. Quite a few here who also missed out opted to do treatment late, some choosing to do an abbreviated version.

In talking this fall with an onc, one advantage in not doing late treatment that stands out to me is that by not doing treatment as a preventative "late", at the time of any recurrence the knowledge base will be greater than it would if I did the treatment now. In the onc's opinion, my choices would be much wider if I have a recurrence and if I didn't do it as preventative treatment now.

I have also definitely noticed in looking at clinical trials that often when the latest and greatest drug is being tested along with trastuzumab, one is not eligible if one has already had trastuzumab once.

Just some thoughts to consider.

A.A.
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Old 10-07-2009, 11:24 AM   #4
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Re: Herceptin four years later- any point???

This is more common than I realized. See my post"Hard o Believe"

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Old 10-07-2009, 03:37 PM   #5
tricia keegan
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Re: Herceptin four years later- any point???

Thank you for replying everyone, I'll pass on all comment I receive here to her.
Steph, she was originally pos, not sure why her onc at that did not give her the herceptin but this new onc had everything re tested and wants her to do it
I honestly was'nt sure if it was worthwhile at this point which is why I posted to get some advice
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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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Old 10-07-2009, 04:26 PM   #6
ElaineM
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Wink Re: Herceptin four years later- any point???

Can she ask for a Her2 serum test to see how strongly her2 positive she is? Then she and her doctor can make an informed decision. If it were me I would agree to get Herceptin for a certain period of time after discussing the issue with my doctor.
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Old 10-07-2009, 05:54 PM   #7
hutchibk
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Re: Herceptin four years later- any point???

Yes, I would say if she can get it, she should by all means get it since it comes with very little side effect and could contribute to avoiding recurrence. I am not a doctor, but I think it's an opportunity for her if it's available for her.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-07-2009, 08:06 PM   #8
Joan M
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Re: Herceptin four years later- any point???

Tricia,

At four years out from diagnosis, your friend could very well be in the clear based on the drop-off in the rate of recurrence after two years, according to the Herceptin trials. However, since we don't have crystal balls to predict whether the cancer might come back even after four years, I would suggest going for it now with the chance that if it were destined to come back, the Herceptin could be the silver bullet in the adjuvant setting.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 10-07-2009, 09:00 PM   #9
Barbara2
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Re: Herceptin four years later- any point???

I would definately take late herceptin if given the chance, and I did. Cancer can return after any number of years. Taking herceptin, even "late", may prevent any lurking cells from kicking in setting up shop again, sometime later in time. No one really knows for sure but logically it makes sense to take herceptin, even if it is "late".

Here is what Dr. Pegram said to me when I asked him about late herceptin back in 2007:

Good for you! I think that’s the right thing even though there’s no data. I think you definitely should do it. Can’t hurt. You have nothing to lose. We know that it works when you take it up front when first diagnosed. We also know that it works in terms of even prolonging survival if you wait until after you develop metastasis, it works, so what are the odds that it doesn’t work in between those 2? I’m sure it does. I think it works. I would have done it if I were you. There’s even a study of that right now (late Herceptin); there’s a trial that’s open. I think you have to have finished adjuvant therapy within 2 years. The study isn’t random; they’re treating everybody. The study is just underway, so it will take a long time for the results (and there are not that many people that would be taking the study; after May 05, everyone started getting Herceptin.)
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DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.

Last edited by Barbara2; 10-10-2009 at 06:40 PM..
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Old 10-08-2009, 03:00 AM   #10
tricia keegan
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Re: Herceptin four years later- any point???

Thank you everyone, I'm sending the link to this thread on to her right now so she can read it herself
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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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Old 10-10-2009, 01:37 PM   #11
hutchibk
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Re: Herceptin four years later- any point???

Lani just posted this today... maybe this will also bolster the argument for her:

at ASCO breast meeting currently in SF


Abstract 228 Poster Discussion: Systemic Mgmt. Thursday, October 8, 2009 6:00-7:00 PM PST
Lead Author: Heather L. McArthur, MD, MPH Memorial Sloan-Kettering Cancer Center New York, NY
Women with small node-negative HER2+ breast tumors appear to benefit from adjuvant trastuzumab (Herceptin) treatment: Based on a review of approximately 500 records of patients treated between Jan. 2002 and Dec. 2008, researchers found that women with small (2 cm or less) HER2-positive breast cancers that had not spread to lymph nodes who received trastuzumab-based treatment after surgery had significantly better outcomes than a comparable population of women treated before trastuzumab was available (Jan. 2002 through May 15, 2004). In the trastuzumab-treated group, there was only one death and no recurrences. In the trastuzumab-naive group, there were ten locoregional recurrences, nine distant recurrences and six deaths. In the U.S., adjuvant trastuzumab is FDA-approved in combination with chemotherapy for the treatment of node-positive or high-risk, node-negative, HER2-positive breast cancer; however, whether women with lower risk, HER2-positive breast cancer derive benefit from trastuzumab has not been established.
“This is a provocative analysis suggesting a significant benefit in disease- free survival for patients with Stage I breast cancer who received trastuzumab,” said Lori Pierce, MD, Professor, Radiation Oncology, University of Michigan School of Medicine.“It will be important to test this hypothesis prospectively to be sure the potential benefit of trastuzumab is not over-estimated in this low-risk patient population.”
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-10-2009, 02:00 PM   #12
tricia keegan
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Re: Herceptin four years later- any point???

Thanks for drawing my attention to this Brenda, I'll pass it on to her. She's still trying to make a decision but this new onc is more than happy for her to have it now.
__________________
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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Old 10-13-2009, 03:04 PM   #13
chrislmelb
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Re: Herceptin four years later- any point???

I'd get it. I had mine late too, 18 months after chemo finished and i had it for 2 years as part of HERA trial. It was so easy to tolerate so why not if if puts off a death sentence??
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Christine

DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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