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06-20-2008, 03:45 PM
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#21
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Gemma -
Just wondering how the appt with the neuro went.
Often they work in teams that include a radiation oncologist, who you can ask to see if it is not suggested.
With only one tumor you may not need at have WBR. They will follow you up closely on your brain from now on and if anything new does pop up, it will be dealt with in a flash.
You will be in a new followup loop just for your brain.
__________________
"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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06-20-2008, 05:00 PM
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#22
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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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Gemma can you ask your doc about Novalis ???
read this ...
http://www.neurosurgery.ucla.edu/body.cfm?id=408
__________________
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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06-20-2008, 05:35 PM
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#23
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Gemma,
I am very sorry that you are having to deal with this problem. I agree with others to get more than one opinion and read the information that has been sent along. Please stay strong and know that we are here for you. Please keep us posted as you decide what treatment to pursue.
I loved your last picture as well as your new one. Please know that you are in my thoughts and prayers. Stay strong- you can do what you have to do.
karen
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06-20-2008, 08:37 PM
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#24
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Senior Member
Join Date: Apr 2008
Location: WA State
Posts: 199
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I will be praying for you and send up many good thoughts. Take care and feel strength knowing many others are here for you as you battle this.
Cindy
__________________
Cindy
L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008
Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!
I am calling this my pink journey
Follow my journey into the pink at my blog here
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06-22-2008, 04:29 PM
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#25
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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Hello,
My appointment with the brain surgeon is on the 25th of june and with the radiation onc is on the 26th.
Pls. keep the prayers going.
Lots of love, hugs and kisses,
Gemma
__________________
My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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06-22-2008, 07:55 PM
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#26
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Hi Gemma,
Sending prayers from Canada. Please keep us posted after your appointments this week.
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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06-25-2008, 08:00 PM
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#27
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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Hello everyone,
My appointment with the neurosurgeon today went very well. He was very good and thorough. My sister and my bestfriend came with me and we were armed with questions! He was very impressed with our knowledge, Thanks to Joe! and to all of you here in this heavenly site.
We discussed surgery and WBR;Radiosurgery and WBR.
I will meet with the radiation onc tomorrow and discuss more options.
I think I'm more comfortable with surgery "crani" take the tumor out of my system and do the WBR two weeks later.
I'll also have an appt. for a second opinion on Monday.
OMG! these decadron are keeping me hyper! haah!haah!
Will post more tomorrow about my appointment with radiation onc.
My love and kisses and prayers,
Gemma
__________________
My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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06-26-2008, 06:43 PM
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#28
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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I've met with the neurosurgeon two days ago. Today I went to see the radiation oncologist. They gave me two options; 1) Whole Brain Radiation (WBR) and RadioSurgery; 2) Surgery and Whole Brain Radiation (WBR).
The radiation onc and the surgeon said both are good options but they're kind of leaning towards the RadioSurgery because it is less invasive. On my part, I'm more comfortable with the surgery craniotomy. I just want the tumor out of my system then do the WBR two weeks later.
I'm so terrified and couldn't make up my mind. I will make a decision tomorrow after my chemotherapy in the morning and get some more opinion from my oncologist.
It's been like a rollercoaster ride for me it makes my head spin non stop! I just want to wake up one day that everything is just a bad dream.
I'm swelling like a balloon. This dreaded Decadron is keeping me up all night.
I'm worried about this brain tumor and I feel like I'm losing the battle. Please keep the prayers going. My kids are too young to lose their mother.
__________________
My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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06-26-2008, 06:48 PM
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#29
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Senior Member
Join Date: Apr 2008
Location: WA State
Posts: 199
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Gemma,
Thank you for the update. I will be praying for the best treatment possible for your situation. May God provide you strength and courage as you battle this newest tumor. Keep the faith, miracles are possible and God will be with you every step.
Take care,
Cindy
__________________
Cindy
L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008
Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!
I am calling this my pink journey
Follow my journey into the pink at my blog here
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06-26-2008, 06:52 PM
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#30
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Gemma,
I wish you would wake up tomorrow and find all this a bad dream, but since that most likely will not happen, I will keep you in my thoughts and prayers. We are all with you and will be here whenever you need us.
__________________
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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06-26-2008, 07:00 PM
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#31
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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May God give you the strength and courage to get through all this. I will pray for you. I am so sorry you are having to go through this..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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06-27-2008, 05:19 AM
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#32
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Gemma,
Thanks very much for the update. Please know that I am thinking of you and know how difficult the treatment decision is. If you are still undecided, you know that you can get more information and please do that rather than go into something not feeling good about it. Stay strong and remember that we all know that you can do this. Sending up prayers for you today.
karen
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06-27-2008, 05:35 AM
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#33
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Gemma -
From what you have posted about your brain met, I am wondering why they want to proceed with whole brain radiation after radiosurgery at this point???
There is a statistic that I found that has held true for me and others here: If you are HER2 positive, have three or less brain mets that can have Gamma Knife, you have a 91% chance that these will be isolated mets and successfully treated. I had two mets.
That is an older study and you may find newer ones that support not needing WBR for a solitary met.
I was able to wean from the Decadron in three weeks after my Gamma Knife. That stuff really wreaks havoc with a person in many ways!
__________________
"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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