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Old 04-18-2010, 02:52 AM   #1
jhandley
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Unhappy recurrence in liver

Hi everyone
Well my herceptin holiday is over. I have recurred to the liver and have some fluid on my left lung as well.
Back on treatment over the next 2 days. Mammo was clear but still seeing breast surgeon as breast has definitely changed.


Jackie
down under
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Old 04-18-2010, 03:09 AM   #2
Ellie F
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Re: recurrence in liver

Oh Jackie, I don't know what to say.I am so sorry this has happened to you.
What's the plan now? Does your onc think that going back on hercetin will do the trick or will he add some chemo??I assume you will be pushing your breast surgeon to do more tests such as ultrasound or a biopsy?
Herceptin has been your magic bullet for so long that I feel optimistic it will get you back to NED.

Ellie
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Old 04-18-2010, 03:53 AM   #3
chrislmelb
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Re: recurrence in liver

Jackie, you must be so upset and i am so disappointed for you. I know you will be back on track with some time and treatment.
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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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Old 04-18-2010, 04:50 AM   #4
Pam P
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Re: recurrence in liver

Hard to get that news, but adding some power drug to the herceptin should put you back to NED. Hopefully soon you can return to just herceptin again.
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Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 04-18-2010, 10:16 AM   #5
Midwest Alice
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Re: recurrence in liver

I'm so sorry Jackie, glad to hear you are goinng back to Herceptin. I am also sorry cause I can't remember your history so I have to ask. How long were you on H and did you reach NED on it? Also how long were you off Herceptin till recurrence? Sounds like Herceptin worked for you in the past and it will work again.

Hugs, ALice
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 04-18-2010, 11:32 AM   #6
StephN
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Re: recurrence in liver

Naturally bummed to hear this news. All was going well for you for the past few years on Herceptin since you had your complete response in 2005 or so?

I know you will have this under control in just a short while. The odds are that one of us who dared to go off our "security blanket" drug would fall off the NED wagon. Sorry it is you this time.

Keep the faith in our new treatments.
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"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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Old 04-18-2010, 01:52 PM   #7
tricia keegan
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Re: recurrence in liver

Sorry to see your bad news Jackie, I hope your new regime will show improvement and get you back NED again asap!!!
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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 04-18-2010, 02:05 PM   #8
Chelee
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Re: recurrence in liver

Jackie,
I am so sorry you have to deal with this again--I know it's not easy by any means. Once you step on it with some chemo & Herceptin I believe you will get back to being NED. You hang in there...I truly know how difficult a time this is for you. I will be keeping you in my thoughts and prayers that you beat this back and quickly.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 04-18-2010, 02:36 PM   #9
Rich66
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Re: recurrence in liver

I don't know how long it's been since your last scans. Might be worth discussing extent of progression and whether it may have begun while on Herceptin. Maybe not crazy to consider Tykerb with or without Herceptin. You might consider re-biopsy/retesting for Her2 and ER...even chemosensitivity testing.
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Old 04-18-2010, 06:04 PM   #10
Ceesun
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Re: recurrence in liver

Jackie, Please know that I am pulling for you and hope whatever treatment option is next, it brings improvement...and NED!! Ceesun
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Old 04-18-2010, 06:06 PM   #11
Sherryg683
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Re: recurrence in liver

I am so sorry to hear this, I am praying that you find a combo soon and get you back to NED...sherry
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 04-18-2010, 08:47 PM   #12
Shobha
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Re: recurrence in liver

Very sorry to hear this, Jackie. Adding my prayers for returning to NED status soon.

hugs,
shobha
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DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 04-19-2010, 05:52 AM   #13
dawn
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Re: recurrence in liver

Jackie

sorry to hear the news. I've just been dx with 6 liver mets and am
at the hospital now getting my 3rd aredia and herceptin inf

going to begin my 3rd round of xeloda also, no se s so far.

Doing my scans the end of may so hopefully this is working
but as I said se s are minimal.

Here's to NED for you and me

Dawn
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Dawn

Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.


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Old 04-19-2010, 04:46 PM   #14
Joan M
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Re: recurrence in liver

Jackie,

Sorry to hear that you've had a liver recurrence. I'm not sure of your history, but is it possible to have a radiofrequency ablation of your liver met?

RFAs are done frequently in the liver for primary liver cancer but also for mets to the liver. Most oncs don't mention the procedure but women on this site have had them as well as cryoablations, which is freezing the tumor rather than burning it with radio waves (not the same as radiation).

Sometimes a local treatment along with Herceptin is effective.

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 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 04-20-2010, 05:29 AM   #15
Sheila
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Re: recurrence in liver

Jackie
Sorry to hear of this setback, but know that we are here for you and you jump back in the ring to fight this beast...
Sending you strength and prayers
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is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 04-21-2010, 09:21 AM   #16
Ellie F
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Re: recurrence in liver

Hi Jackie
How are you? Have you started treatment yet? Let us know as we're thinking of you.
Hugs
Ellie
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Old 04-23-2010, 01:08 AM   #17
jhandley
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Re: recurrence in liver

Hi all
Had abranxae and herceptin yesterday. Think its working already!
Jackie (down under)
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Old 04-23-2010, 01:38 AM   #18
Ellie F
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Re: recurrence in liver

Hi Jackie
Hope it is! Thinking of you. Lori had a good response to abraxane for her liver so fingers x you will soon be NED again

Ellie
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Old 04-23-2010, 07:37 AM   #19
lexigirl
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Re: recurrence in liver

My hopes are that your new tx is going to kick that nasty ca to the curb! You'll be back to NED in no time!

Hugs and Prayers,
Lexi
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Old 04-23-2010, 04:46 PM   #20
Lori R
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Re: recurrence in liver

Jackie,
I can't believe I missed your earlier post. I am so sorry to hear the frustrating news.

But....I've been the Abraxane / Cryosurgery cheerleader. I had very few side effects with Abraxane and really hardly knew I was on treatment. So...I am hoping that you can breeze through this treatment and be done with the BC. As my signature indicates, I hit the tumor with cryoablation first and then had the chemo as a safety net.

Here is to many more years of NED, it is just around the corner. Please keep us posted.

Thinking of you....Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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