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03-04-2011, 07:42 PM
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#21
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: brain mets
Sorry for your crappy news BUT - There always is hope. Especially with all the gamma knife type treatments out there today so don't give up! My best to you
Joyce
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03-04-2011, 08:02 PM
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#22
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: brain mets
Pam,
I am keeping you in my thoughts and prayers. Stay strong and looking forward. Lots of brain mets survivors here that you can hang on to their success.
__________________
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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03-04-2011, 08:44 PM
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#23
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: brain mets
Dear sweet Pam ~ I just wanted to offer you my love and prayers. I am so sorry this, too, has come your way!
Hugs -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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03-04-2011, 11:31 PM
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#24
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: brain mets
Sending you my very best wishes.Thanks for keeping us up to date. I love hearing from you even when the news is sad because you have so much to offer. I love that you are able to give others the benefit of your experience even while you grapple with such difficult circumstances yourself.I am hopeful the treatments will go well.
Trish
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03-05-2011, 04:31 AM
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#25
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: brain mets
Thank you all for your encougements.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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03-05-2011, 03:08 PM
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#26
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: brain mets
Pam
As I have said before you are a fighter and you
will get through this but you are in my prayers
and healing thoughts every day. You deserve
a break and I only wish you the best.
So many have made it including friends of mine
so push on and take it easy on yourself.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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03-05-2011, 09:39 PM
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#27
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Senior Member
Join Date: Oct 2010
Posts: 92
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Re: brain mets
Dear Pam,
I am so sorry for all you're battling right now. You're in my thoughts and prayers and I'm sending you a big hug.
__________________
Dx June 2010
ER- PR+ Her2+++, Stage 3C
A/C x 4
Mastectomy 8/18 nodes+
Taxol/Herceptin x 4
35 rads
Continue Herceptin for 1 year
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03-06-2011, 06:27 AM
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#28
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: brain mets
Pam, I was so sorry to read your post...sorry i did not get you called back this past week, it was a hard one for me. They have come a long way in the treatment of brain mets....thankful yours were found now....take one day at a time and remember that once you are through with WBR, Halaven is waiting for you to rid your body of all the nasty cells.....you are always in my prayers, you have had a crummy year and you are so deserving of a break....have faith, it is coming! There are so many here who can give you advice/experience with brain mets...just another wonderful part of this group...experience!
__________________
"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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03-06-2011, 03:12 PM
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#29
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: brain mets
Have you seen this Pam?
http://her2support.org/metastasis/brain-cns
I know nothing about brain mets, but there seems to be several things about brain mets to check out.
In the meantime add me to your list of people who are thinking of you and wishing you the very best.
Chin up !! Hang in there !!!!!!!! Keep putting one foot in front of the other and never give up !!!!!!!!!!! |
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03-06-2011, 05:03 PM
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#30
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: brain mets
Pam,
My heart just sank when I read your news--you just haven't even had time to come up for air. There is not much else I can say that hasn't already been said other then how much I hate this damned disease! (I wanted to scream when I read your post.) I'm so glad you were at least able to get one dose of the Halaven...I've read such positive news on it. I'm sure it will do some serious damage on the nasty cancer cells. Surprise attack! Shelia is right...they have come along way in treating brain mets. You truly are a warrior/fighter and I know you will get through this too. You have alot of brain met survivors here to help you along. I will be keeping you in my thoughts and prayers. Sending you a lots of love & a really big hug!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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03-06-2011, 05:24 PM
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#31
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: brain mets
Pam you are in my thoughts and I'm praying for you. There are great meds for brain metsand many here that can help you with their experiences. Glad you have your hips done so now can start to heal while you knock out the brain mets. Hang in there.
sending love and hugs,~Alice
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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03-06-2011, 05:43 PM
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#32
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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: brain mets
Pam,
I am so sorry to hear your latest. Really just takes the wind out of my sails. Dang. I just wish you could get a bit of breathing room here. I am betting you feel like you are lost at sea with one wave after another crashing over you.
There is so much on the brain mets front these days that I am not about to give up on you, so please you stay mentally strong too! I think you said you will begin Haleven once the radiation is complete. That drug has certainly worked wonders for our dear Sheila, and it is my belief it will do something extraordinary for you too! I am sorry you are struggling so right now. I wish I could reach across the web and give you a big hug. Prayers coming.
__________________
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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03-10-2011, 05:22 PM
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#33
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Senior Member
Join Date: Nov 2009
Location: western ma
Posts: 280
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Re: brain mets
dear pam.
i have always loved that smiling photo of you. my heart ached for you when i read your post. i have thought of you every day since reading it. i hope with all my heart that you will find relief from those mets very soon. yours, valerie
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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03-10-2011, 09:09 PM
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#34
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Re: brain mets
Pam,
I too am thinking of you and hoping that rads will do the trick & that you can continue Halaven,
gentle hugs,Marcia
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03-11-2011, 06:12 AM
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#35
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: brain mets
Thanks everyone for your continued good wishes and caring - lifts me up.
Today is #7 rad out of 20 , almost half way. Decadron not too bad - had relieved headaches, dizziness. Hanging in there - trying to stuff protein and good cals in to gain some weight. The decadron hasn't had much of an effect on that. More fatigue coming they say. so lots of naps i guess.
Thanks for your encouragements and good thoughts and prayers for this tx to work I kick these mets out of my head.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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03-11-2011, 06:42 AM
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#36
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: brain mets
Pam,
I truly do admire you. Hope you have a good day.
Amelia
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03-11-2011, 09:15 AM
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#37
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: brain mets
I am praying and pulling for you, too, Pam. Ceesun
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03-11-2011, 10:33 AM
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#38
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: brain mets
Pam, sending you strength for the next steps and hugs. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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03-11-2011, 11:20 AM
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#39
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Senior Member
Join Date: Oct 2010
Posts: 123
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Re: brain mets
Pam,I wish you well,I truly think you w/beat this!!! I am lifting you up in prayer lady,you just keep the FAITH,Lots and lots on here pulling for you, Hugs from WV,Joanna J
__________________
found susp.lump Feb 2009
DX Feb 2009 ...Her2+ stage IIa ER/PR- grade 3
partial mast. Right breast,clear margins
chemo (2) carboplatin & Taxotere
could not finish chemo (hospitalized because of infection)
37 rounds radiation
Herceptin (1 yr.)
No clinical trials
Jan.2011 BRAC 1/BRAC 2 Neg
Aug.2011 clear bone/catscan NED
Apr.2012 clear digital mammo
& ultra sound of breasts
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03-11-2011, 12:16 PM
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#40
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: brain mets
Pam, I am praying for you. I really feel you will beat this. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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