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04-23-2008, 02:26 PM
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#1
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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is there anyone treat it only with Navelvine for liver mets
After have tykerb and xeloda and fail 5 weeks after ,my doc give it me only Navelvine ...single agent ??? I ask him if is only that drug ? and he said ..are you going to teach me medicine ? .....I was really hopeless and speechless and in shock ...the last time on March 3 when I did start T/X he told me that I never can get herceptin again ...and today he told me that I used all the therapy for her2 (herceptin ,DM1,Tykerb,Xeloda) and he said that I already used taxotere in the beginning ...and I can't used it anymore (Taxotere work for me perfectly ...when I was diag) I HAVE THIS f%#$ caNSER ...and I ask him about how he is controlling my hormones and he said that is "a good data" that hormone therapy docent let the quimo work like it suppose to ...and only NAVELVINE ????????????PLEASE ANY HELP ...please don't let me like this ...I went alone to see my doc ..and with all the opposite that he have for the information over the Internet plus my BIG Accent ....is impossible for me to get some information ...I felt like a dog (no offense to them) go to the doc office for 2 minutes and leave with a prescription that is it ..............any imput my 'smart sisters ...LANI ,BECKY,JEAN ,RB, STEPH,ALASKAANGEL ,everybody please .......please .....
__________________
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
Last edited by lilyecuadorian; 04-23-2008 at 04:09 PM..
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04-23-2008, 02:39 PM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Lily
My first question is why you are not on something to supress the estrogen....already I don't like the sounds of this oncologist...he sounds insulted because you know as much as him/her! There have been many on this board who go back on Herceptin after Tykerb...and also try a Taxane again like Taxol or Abraxane....even Navelbine and Herceptin....but just navelbine? I would go get another opinion....you have many options, just have to find a good Dr that will fight for you!!!! You are in my prayers dear Lily....wish I could help more like to go to the Dr with you.
__________________
"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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04-23-2008, 02:59 PM
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#3
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Lily,
I know the "smart sisters" will chime in later. You've already
received some good advice from Sheila.
I agree that there are other taxanes that you
can try if your onc doesn't want you back on taxotere.... but I
am really questioning if this is the right oncologist for you.
If you don't feel like your onc is fighting for you then it's
time to find another one.
Compared to all the crap we go through, suppressing estrogen
is easy. This makes no sense to me that you are ER+ and not
doing anything about it.
I hope you can find someone to go to your next appointment
with you. It always helps to have another set of ears there.
Good luck Lily. I know the "propellerheads" will have lots of
good advice for you.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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04-23-2008, 03:20 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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I agree with Sheila and Pink,
I am so furious with your doctor he should be fighting harder for you! I really can't add anything else like Shelia and Pink did but know I love you and I am here for you.
Love Karen
__________________
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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04-23-2008, 03:45 PM
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#5
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Lily,
I am so sorry that you have to deal with an oncologist that is not doing their best to help you. You may want to go get a second opinion. Please know that I am praying for you. May God hold you close during this time of decision making.
Hugs,
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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04-23-2008, 04:07 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Lily,
Someone has to go with you to your next appointment...to advocate with you and for you. Your Oncologist sounds like a jack*ss...You are such a sweetheart and I can imagine how self conscious you might be trying to ask questions and all. Please at the very least take a small tape recorder with you so that your husband /friend can hear what was said at the appointment. Maybe its time to switch Docs...I know this too might be very stressful but he doesnt sound like he is doing all that he should for you.
Big hugs,Marcia
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04-23-2008, 05:17 PM
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#7
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Lily,
It makes me angry that your oncologist is not fighting more for you. Perhaps you should get a second opinion about the chemo and the estrogen blocker as well. I'm praying for you to get the answer you need for NED. 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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04-23-2008, 05:26 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi Lily,
I'm sorry to hear your story. I agree that you need a second opinion and you should seriously consider finding and oncologist who respects your questions and your desire to find the best treatment. I also agree that you should take someone with you to your appointments.
Best regards,
Barbara H.
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04-23-2008, 05:40 PM
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#9
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Senior Member
Join Date: Nov 2007
Location: We presently live 1 1/2 hrs fr a city. in manitoba canada
Posts: 148
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dearest Lily
I feel just sick for you. You have come into my mind today...just know we are all thinking about you. One of these sisters are going to help you sort this out..then you can kick the onc out the door and find a new one.(i have a few other choice words but i will show some control)
Big hug going out to you. Don't give up Lily!
suzanne
__________________
suzannne
dx aug10/07
3 pos high, grade 3
tumor 2.5cm multifoc
bil mast recon sept 24/07
neg snb/neg lymph vascular
clear marg
chemo a/cx 4 rds
tomoxifan started feb11/08
herceptin to begin soon
herceptin completed feb/09
aromacin(A.I)for as long as i can
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04-23-2008, 05:42 PM
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#10
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Lily, I agree with the previous posts that call for a second opinion. You deserve nothing less than complete confidence in your onc. and in return he should be respectful of you and your questions. I go to the cancer institute near me and I am sure that if I spoke another language and was having communication problems, they would go out of their way to find someone to translate or help me. If they can't do that for you, you need to bring a friend who can. Good luck to you and I enjoy your posts. You sound like a very sweet person.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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04-23-2008, 07:04 PM
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#11
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Dear Lily - oh Sis - you sound SO distressed  I'm so sorry this is happening to you - you deserve so much better!!!
What's wrong with this Doc that he can't really listen to you or treat you with respect???
Maybe one of the folks here can suggest another oncologist in your area that will really be on your side.
Thinking of you and praying everyday sis
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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04-23-2008, 07:36 PM
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#12
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Dear Sweet Lily,
I echo the other opinions - this oncologist does not sound like he is fighting for you, and he also must have flunked Bedside Manner 101 in med school. Please try to seek a second opinion as soon as you can.
And you MUST take someone with you to your appointments to advocate for you and put your thoughts and questions across. I wish I could do more for you, you are such a lovely person Lily. Please know that I am thinking of you and praying for you.
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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04-23-2008, 08:36 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Lily,
My wonderful former onc is in Pinehurst NC now. That should not be too far from you. He is an advocate for the patient, and very forward thinking in treatment plans. If you would like for me to give you his name and help you get in touch with him, PM me. I'm sure a second opinion would be good and I can't think of a better onc.
__________________
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!
Last edited by sassy; 04-23-2008 at 08:39 PM..
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04-23-2008, 08:47 PM
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#14
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Yep, time to get a more caring, compassionate doctor who give a damn. I can't believe his attitude...this is your life. He can go back home to his golf game or whatever when his day is over, you've got a child to raise. My Oncologist told me that since taxotere, xeloda and herceptin worked so well for me, it could always be revisited if we ever needed it. There are plenty of other drugs used to fight breast cancer, I would demand every dang one of them be tried before saying there's nothing else. I'm sure someone will give you a current list of the used drugs today and even trials that may be out there. ...Find another doctor..please..sherryg683
__________________
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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04-23-2008, 09:17 PM
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#15
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Dear Lilly,
I am so sorry you are suffering like this. It is hard enough to deal with the illness to, in addition, get all this crap from someone who should rather be considered our saving angel- Pequeña, could you choose another doctor? Why aren't you on Tamoxoifen? Do not let anybody take away your peace of mind, I am sure that many of our sisters here could recommend another doctor, even if you have to travel some miles away from home, it is going to be better for you to have a doctor that helps you both mentally and with a better treatment. Keep us posted. Lots of love.
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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04-23-2008, 09:23 PM
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#16
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Oh, Lily, you should not have to be treated like that. I'm not a chemo. expert, but it seems that you should be on more, and your doctor is a jerk. I hope and pray that you can find another one, Love, Bill
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04-24-2008, 04:32 AM
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#17
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Good one Sassy! 
I'm always amazed how everyone tries to be so helpful here.
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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04-24-2008, 06:55 AM
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#18
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Senior Member
Join Date: Nov 2004
Posts: 190
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Lily,
Everyone has said what I would have said. I have seen people fail on one herceptin combo and have a response on another! Please seek a second opinion (or third) and take some one with you!!!!!!
Kim
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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04-24-2008, 10:14 AM
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#19
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Lily,
This one from Sassy...
"My wonderful former onc is in Pinehurst NC now. That should not be too far from you. He is an advocate for the patient, and very forward thinking in treatment plans. If you would like for me to give you his name and help you get in touch with him, PM me. I'm sure a second opinion would be good and I can't think of a better onc."
<!-- / message --><!-- sig -->__________________
Sassy
Lily, Sassys Doc seems like he might be a "winner"...any chance you could see him?
Hugs,Marcia
Last edited by Soccermom; 04-24-2008 at 10:15 AM..
Reason: forgotto quote
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04-24-2008, 10:58 AM
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#20
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Senior Member
Join Date: Sep 2005
Posts: 556
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Lily,
Please see another onc. The current one is not doing the right thing for you.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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