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07-05-2011, 05:02 PM
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#1
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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1st on Halaven, now 1st off of it
Seems after the initial miraculous response to Halaven...(Eribulen Mesylate) , the body is now showing a mixed response....my CT looked great, but the neck nodes doubled in 2 weeks and now another large one...so game change yet again...I sure wish the cancer wasnt so smart. I will begin Gemzar with Herceptin next week.....I did get 7 months out of the Halaven, and I am thankful.....seems I am one of the few getting my hair back while still on it.....I must have amazing hair follicles!
So on to Gemzar.....hoping it will be my magic for a while...seems it will be weekly...not looking forward to being tethered to the IV bag that frequently...but we do what we must. Hoping I will still feel good enough to help my sister, as she goes through a double mastectomy and bilateral sentinel node dissection in 2 weeks.
New Avatar is my Dad and I at Relay, celebrating 35 yrs total of cancer survival.
__________________
"Be kinder than necessary, for everyone you meet 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
Last edited by Sheila; 07-05-2011 at 05:09 PM..
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07-05-2011, 05:27 PM
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#2
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: 1st on Halaven, now 1st off of it
Oh Sheila,
You are such an inspiration for me to fight on. Wishing you all the best in your new treatment and for this to be the one that OUTSMARTS the cancer. 35 Years! very impressive.
You will be there for your sister! I truly hope you feel well.
Hugs and Prayers,
Kris.....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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07-05-2011, 05:56 PM
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#3
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Senior Member
Join Date: Oct 2010
Posts: 229
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Re: 1st on Halaven, now 1st off of it
I love your positive hopeful outlook! Here's hoping that the new treatment will be the answer! You are strong, so keep your spirits up. Hugs!
Elizabeth
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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07-05-2011, 06:00 PM
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#4
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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Re: 1st on Halaven, now 1st off of it
Sheila,
If there is a role model worth paying attention to, it is you! Miss our lunches but understand that there is more than enough going on where you are. Blessings to you and your sister during this time...
Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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07-05-2011, 06:50 PM
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#5
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: 1st on Halaven, now 1st off of it
Will you be getting Herceptin with that?
Edit
Never mind..I can read 
Last edited by Rich66; 07-05-2011 at 09:27 PM..
Reason: inattentive surfing
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07-05-2011, 06:52 PM
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#6
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: 1st on Halaven, now 1st off of it
Sheila, you are one brave WARRIOR WOMAN!! Keep on fighting - love the pic of you and your Dad.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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07-05-2011, 07:26 PM
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#7
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: 1st on Halaven, now 1st off of it
Love the photo of you and your Pop! Really sorry the run on Halaven is over. I was hoping that would go much longer. Skin mets still under cover for now? Well, here's to hopin' that Gemzar is another magic bullet that gives you a long run, my friend.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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07-05-2011, 08:04 PM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: 1st on Halaven, now 1st off of it
I am sorry to hear your Halaven journey is over. I will keep my fingers crossed the Herceptin and Gemzar will work for you. Nice photo of you and your Dad. The two of you are quite a team !!!!!!!! All the best to your sister.
I will keep my fingers crossed for her too.
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07-05-2011, 09:41 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: 1st on Halaven, now 1st off of it
Sheila,
Good on the internal stuff. Boo on the nodes-They are really stubborn and just not getting on the program. Hoping gemzar will fool them.
I know that supporting your sister is important to you, but don't forget to take care of your beautiful self.
Much love
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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07-05-2011, 10:23 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: 1st on Halaven, now 1st off of it
Sheila,
Sorry the Halaven has slowed its work and hoping Gemzar will pick it up. You continue to be our leader of HOPE.
Love the pic of you and Dad--they really are special people aren't they!
Keeping you in my prayers.
__________________
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.......
14 YEARS NED!
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07-06-2011, 12:29 AM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 1st on Halaven, now 1st off of it
Well, friend, it seems to be mushroom season again - on your neck! Hope Gemzar will saw them off at the root. Understand it is a long drive and takes a whole day out of every week for the new treatment. It WILL be worth the effort.
My best thoughts going toward your dear sister and her new challenges.
Wonder what happened to foil the Halaven so suddenly?
__________________
"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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07-06-2011, 03:34 AM
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#12
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: 1st on Halaven, now 1st off of it
I hope the Gemzar does the trick on those neck nodes and your sister copes OK with her treatment. Love the pic with your Dad and look forward to the photo with you, your Dad and your sister celebrating 50 years of cancer survival in total.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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07-06-2011, 07:47 AM
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#13
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: 1st on Halaven, now 1st off of it
Sheila,
Wishing you very good results with your next treatment! Your positive attitude is such an inspiration for me. You are in my prayers.
hugs,
shobha
__________________
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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07-06-2011, 07:56 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: 1st on Halaven, now 1st off of it
Those pesky nodes, oh rats. I am sure you will have good results with Gemzar and Herceptin. Can they add Tykerb back?
I love you lots Girl.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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07-06-2011, 03:02 PM
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#15
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: 1st on Halaven, now 1st off of it
Sheila,
Those damn neck nodes again. They are feisty. But your getting 7 months out of Halaven is a good response. The Gemzar and Herceptin protocol will also help in pushing them back.
I thinking about your sister and wishing her a good outcome.
Joan
__________________
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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07-06-2011, 06:00 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: 1st on Halaven, now 1st off of it
Sheila,
My thoughts are with you. It is always a difficult adjustment when a treatment stops working. Gemzar may also shrink those nodes and hopefully bring you to NED. I also hope that all goes well for your sister.
Best wishes,
Barbara H.
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07-06-2011, 07:21 PM
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#17
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: 1st on Halaven, now 1st off of it
Sheila,
Love the photo of you and your handsome Dad.
You are truly wonder women!!!!
Sending you huge hugs and best wishes on the new treatment.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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07-07-2011, 05:53 AM
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#18
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: 1st on Halaven, now 1st off of it
Thinking of you as you begin a new regimen, and also thinking of your sis. Great picture of you and your dad! Hope you get good results quickly, Sheila.
Barb A.
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07-07-2011, 10:15 AM
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#19
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: 1st on Halaven, now 1st off of it
We had some good news on the forum and bang! I read your post Sheila. I was hoping so much for you, our courageous Halaven pioneer. 7 months is not enough. You deserve more. You deserve Ned.I hope the next combo will get you there. Thinking of you. Michka
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07-07-2011, 02:41 PM
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#20
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 1st on Halaven, now 1st off of it
Oh not the news I wanted to read Sheila but onward and upward like the true fighter you are and praying you have a great response to the Gemzar, weekly may be a pain but hopefully the smaller dosage will make any side effects less too!! xx
My best to your sis also!
__________________
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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