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Old 01-07-2008, 10:17 AM   #1
kareneg
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Red face As I thought

The cancer is progressing again. I have several tumors in my liver but two stubborn ones are progressing. And I have a few nodules in my lungs and he said it look like some of them are growing not much he said though, and I also have a tumor on the tail of my pancreas and that stayed stable. So he put me on Gemzar It seems I can't find any treatment that will last longer than four months I pray this one will. I am not going to stress about this just positive thoughts that all I will allow. But I would love to hear some responses from my lovely ladies who have been on Gemzar and how they made out and if any side effects. Thank you all I love you!
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Love and Hope
Karen

IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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Old 01-07-2008, 10:27 AM   #2
nitewind
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Karen, I've not been on this medication, I just want you to know that you have all my best thoughts and I'm keeping you in my prayers. I surely pray that this is the one that will do the job for you.
Hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 01-07-2008, 10:44 AM   #3
BonnieR
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Just stopping by to offer support and love. I am sure that those with experience on the drug you refer to will be coming on board soon with good information. Meanwhile, keep the faith.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 01-07-2008, 10:54 AM   #4
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Hello Love...

I am sorry to hear this news today, I have you in my continued prayers Sweet Neighbor and have been saying them 'louder' just in case I am not heard the first time..(smile). Soon you shall hear from these fines Warriors who have been on Gemzar and they shall help you out further. If there is anything I can do gathering anything you may need on clinical trials coming to Rhode Island please speak out and I am there. For now I will leave you with some of my positive energy, with prayers that you can remain strong until the next move comes up. IBelieve you when you say you are not going to stress because I know you firsthand, I can hear your voice!! Keep your attitude for the upcoming fight and remember that I love you too>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 01-07-2008, 02:42 PM   #5
Sheila
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Karen
What about Avastin and Abraxane or Taxol with the Herceptin...I had great results from this combo, and even though I am off the Avastin, I remain on the other 2....the Avastin did a number on my B/P, then the insurance refused to pay for it, but all in all it did work well. It blocks the blood supply to the tumors so they can't grow, and eventually die. Sending healing thoughts and prayers to you.
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"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
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Old 01-07-2008, 04:59 PM   #6
Mary Jo
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Hi Karen,

I cannot offer any opinions on the treatment but did want to send my love and prayers to you. I care.

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 01-07-2008, 07:11 PM   #7
kareneg
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Posts: 371
Red face

Thank you all for the love and support. Sheila I don't think he will put me on Abraxene or Taxol right now because I progressed on and Taxotere. He is going to email the doctor I had at Dana Farber to get more ideas so maybe Avastin will be in there some where. I pray that Gemzar does something for me if not he said he will put me in the hospital to heavily pre medicate me and give me the Carboplatin. As for the new drug IXEMPRA he is going to wait to give this to me since I just failed the taxotere, I am so confused and of course I was alone this morning when I went to see him so all I remember is bits and piece's in between all the tears. So thanks again for all of the love it helps me to be stronger and never to give up this fight. And if anyone can give me some info about there adventure with Gemzar I would deeply appreiciate it. I love you all so much and thanks again for all the support.
__________________
Love and Hope
Karen

IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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Old 01-07-2008, 07:19 PM   #8
Sheila
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Karen
I think Lolly was on Gemzar if I recall...hopefully she'll post, or you could private message her....even though you failed on the Taxotere, you may not on Taxol with the Avastin....I'll be anxious to see what they say....until then, remain strong, you will beat this again, you are in my prayers Karen.
__________________
"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
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Old 01-07-2008, 07:22 PM   #9
dhealey
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Karen, I can't offer any input on these drugs, just want you to know I am thinking about you and praying they find the right combo for you. Keep on fighting!
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 01-07-2008, 08:21 PM   #10
Carolyns
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Location: South Florida
Posts: 477
Hi Karen,

I am sorry to hear that you got this news of progression. I have been on Gemzar and found it easy to tolerate. I was tired and had to go with 2 weeks on and 1 week off rather than the 3 weeks on and 1 off originally intended. My counts dropped on the 3rd week so we switched.

I used Zofran (don't know if I needed it) but never got a bit sick. Did not lose my hair (thinned a bit and hurt at the scalp) and just felt a little tired. The best part is that it kicked the liver mets to the curb. I hope the same for you!

Love, Hope, and Peace, Carolyn

PS - That is one beautiful baby you are holding...but, I'll bet you have heard that before.
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Old 01-07-2008, 08:30 PM   #11
lexigirl
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Dear Karen,

I am sorry that you are dealing with progression. I do have some positive news re: the gemzar tx. There is a gal from the bc.org who had liver mets upon diagnosis of her bc. She was on gemzar+ herceptin and it kicked those mets right to the curb! She has been NED ever since. I believe it's going on 5 years!! There is hope!!

Please know that you are in my prayers for an awesome response to your new tx.

Hugs and Prayers,
Lexi
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Old 01-07-2008, 09:02 PM   #12
lilyecuadorian
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Posts: 542
Oh my Dear Karen ...I write this post to get this pop up and someone savior and smart then me give you more ideas ...you was not alone because I was thinking about you and pray also ..in the morning when I was getting my infusion; hope you keep in you heart what Lexigirl said about gemzar ..!!! how long you have to wait for start treatment again !! love you my friend and keep the fight attitude
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 01-07-2008, 09:03 PM   #13
sassy
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Karen

Just wanted you to know that you are in my thoughts and prayers. Hope the new treatment works wonders.
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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 01-07-2008, 09:13 PM   #14
Vanessa
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I have not been on Gemzar, but I want you to know that I am thinking and praying for you daily.
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Old 01-07-2008, 09:27 PM   #15
madubois63
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Karen - I too have no experience with Gemzar, but wanted to send my prayers and support. I truly hope this treatment lasts long enough to put you in to NED and keep you there. I will be starting a new treatment (new for me - xeloda), so I understand your angst. Good luck sweetie...
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 01-08-2008, 04:31 AM   #16
Mary Anne in TX
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Hi Karen!
I've not used Gemzar, but hope it is THE one for you! I thought of you this morning as I opened and read the message from Lani about the case discussed that showed good results for brain mets with someone who stayed on herceptin after diag. with mets and added chemo. I think that keeping a totally open mind about all these drugs and how to combine them and retry them, etc is so important. I think so often that we close too many doors too quickly. I'm praying for you and sending lots of positive, hopeful, fighter type thoughts your way! Take some time today to kick some "fear butt" and then get ready to kick some bc cell butt! You're terrific, courageous, and very loved! Start getting ready for "THE BATTLE! Lots of love, ma
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 01-08-2008, 06:51 AM   #17
sarah
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What about Iressa? Isn't that good for lungs? or is it just for lung cancer not bc?
there are solutions, stay strong
hugs and love sarah
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Old 01-08-2008, 04:40 PM   #18
mslinda
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Posts: 118
Karen, don't give up. I don't have experience, but I have the ability to pray for you, which I am doing.

Linda
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05

"Worry looks around. Sorry looks back. Faith looks up."
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Old 01-08-2008, 05:21 PM   #19
charlotte
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I was on gemzar and taxatore... It put me in remission for about 18 months....gemzar was tolerable... Hang in there...
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Old 01-08-2008, 07:32 PM   #20
StephN
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Question

Dear Karen -
Sorry you had such a rough day.
Don't know what your onc is thinking. I also failed on Taxotere for adjuvent treatment. But that did not prevent my med onc from putting me on a combo with TAXOL only six months after I had finished Taxotere.

Taxol is a good drug that has synergy with other drugs. It worked for me with raging liver mets.
__________________
"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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