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09-23-2008, 07:02 AM
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#1
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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My scans and progress notes were mailed to Chicago yesterday - I may or may not be eligible for Gamma Knife. If I'm not eligible for Gamma Knife then they want to do brain surgery and implant chemo on what they cannot remove. Could end up unable to speak, hear, see....etc. I'm trying to hold it together through all this. I slept good last night for the first time in over a week. I will post again when I find out the news. I don't want to give up fighting....am I crazy?
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Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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09-23-2008, 07:07 AM
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#2
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Barb - You are NOT crazy - Hopefully you will be eligible for the Gamma Knife. Did they ever determine that this could be necrosis?
I am sending my prayers for you.
all the best
caya
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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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09-30-2008, 07:09 PM
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#3
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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Barb
I am keeping positive thoughts for you. Have you heard anything new? Are you still going to Chicago? Please let us know how you are doing. Peace KS
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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09-23-2008, 07:11 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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No, Barb,
you're not crazy. I'm sure just waiting to see if you are elibible for gamma is the hardest part. My sincere best wishes for a good and manageable outcome.
__________________
Diagnosed 4/03/03, age 50
3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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09-23-2008, 09:22 AM
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#5
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Senior Member
Join Date: Mar 2006
Posts: 306
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Barb,
I sure wish you'd be referred for an MRi/spec or (help someone!!) what it is called. It will show active vs. necrotic tumor.
I would want to know this for a fact ie: either it is or is not, before I agreed to any kind of tx option.
I can't imagine that a third focalized rad tx would even be in your best interest as it is all cumulative...
There are other options you might try first, if you are not suffering symptoms, or if the tumor is not in an immediately life threatening spot. Should it be first determined that this is an active brain met.
Again, I have had 'good luck' with Temodar in combination w/ Xeloda for over three yrs, so far.
This is 'old news' by four yrs. presented at the San Antonio Breast Cancer Symposium. There has been more recent data, but can't put my finger on it:
Conclusions:
The combination of C (Xeloda) and T(Temodar) seems to be active and well tolerated for the treatment of brain
metastases from breast carcinoma. Further studies should include the evaluation of this combination with radiation and as adjuvant therapy in those pts who are at high risk of developing brain metastases.
Wednesday, December 8, 2004 4:30 PM
*********
And here is just a snip from one of Emmay's posts re: her sister's brain mets tx's:
"....but the neuro-oncologist is seeing some very early encouraging results with Sorafenib/Temodar combo. She said they are "radiation sensitizers", so she would like my sister to start the protocol(if she choses it) before her next CyberKnife treatment...."
Please... since you are not crazy and don't want to 'give up'... talk to several very knowledgeable neuro/breast/brain mets people... ok??
hugs if you need them xoxoxoxox
pattyz
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09-23-2008, 09:42 AM
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#6
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Hey Barb - thinking of you Sister - especially as I have just recently been diagnosed with 'multiple' brain mets and am about to go for WBR on the 3rd October.
Hope they find the best plan for you Barb (and me!:-)) All the best.
Blessings
Hermiracles
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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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09-23-2008, 09:46 AM
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#7
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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I agree you are not crazy. All of us are doing all we can to make it through day by day, week by week, month by month and year by special year. I don't think their are any of us who wouldn't do anything to survive. That's what makes us fighters!!!! So hang in there and we are all praying for you.
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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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