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Old 09-17-2010, 08:49 PM   #1
sally
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Spreading

Hi, I recently found out the cancer spread to my brain. I had WBR and finished my last radiation treatment today. I went to Onc because my body is in severe pain. While I was on radiaton for a month the cancer spread in my bones,spine and torso. My whole upper and lower parts of my stomach is extremely hard and painful. I am starting Taxatere, Cisplatin and Herceptin This Tuesday. I think you usually wait a few weeks after radiation to start on chemo. I hope I can handle it without too many side effects. He wanted to give me Carboplatin but I developed an allergy to that one. So hopefully I'm not allergic to the Cisplatin. Sally
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Dx March 2004 HER2+ er/pr+ 8/16 + lymphnodes mets to the liver Stage IV / 6 cycles of TCH and 33 rads . NED Continued Herceptin 3 years w/ Femara. Tumor markers start to rise in Jan of 2007 and swiched to Tamoxifen. August of 2007 found more mets to liver and lymphnodes outside of liver. Went on Tykerb/Xeleoda--spots on liver gone found large mass between intestines. March 2008 started TCH. Stopped Carboplatin due to allergy. Still on Taxotere and Herceptin. Nov 2008 mass is gone. 3 new spot on liver and one on spine. Radiation on spine. tykerb/gemzar for liver mets. PET in April 09 showed shrinkage still a little activity, continue tykerb/gemzar until Aug 09. PET showed new spot on my spine more on my liver and a bunch of enlarged lymphnodes in upper chest. Start Adriamycin Sep 09. more radiation on spine . April 2010- Still on Adriamycin 3wks on 1 wk off and zometa every 28 days. PET -May 2010 showed progression. Starting Herceptin/Navelbine on June '10
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Old 09-17-2010, 09:20 PM   #2
ElaineM
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Wink Re: Spreading

I am sorry to hear about the spreading. I don't have experience with this, but I want to say I have my fingers crossed for you. Hopefully the combination your doctor choose will work. If not maybe you can look into a T DM1 clinical trial.
Take care of youself. Get lots of R & R over the weekend, so you will be ready to challenge the cancer on Tuesday.
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Old 09-17-2010, 10:17 PM   #3
Jackie07
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Re: Spreading

Sally,

I am sorry to hear about the spread. Please read Bejuice's thread 'positive stories' to get some encouragement. Hopefully more members will see your thread and write about their experience.

Sending prayers your way. Take care and keep us posted.
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Old 09-17-2010, 11:13 PM   #4
Jean
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Re: Spreading

Sally,
Wishing you all the best with your new treatment on Tues.

Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 09-18-2010, 01:58 AM   #5
Chelee
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Re: Spreading

I am so sorry to hear your news...you have been through so much already. That chemo combo is a good one so I'll be keeping you in my thoughts that it works...and well! Have you checked to see if you have any of the TDM1 trials close to you? (Just a thought.) I wish I could do something for you...my heart goes out to you. I'll be keeping you in my thoughts and prayers. Hang in there...and don't forget...we are here for you any time.

Chelee
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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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Old 09-18-2010, 08:54 AM   #6
Lien
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Re: Spreading

I'm really sorry that you have to face all this. It must be scary and hard on your system. Hope this chemo combo kicks back the cancer and brings you improved QOL.

Sending virtual cancer-killing arrows to deal with the pesky buggers.

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 09-18-2010, 03:45 PM   #7
tricia keegan
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Re: Spreading

I'm so sorry Sally and have no advice but thinking of you ((((hugs))))
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
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Old 09-18-2010, 05:51 PM   #8
Laurel
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Re: Spreading

Sally,

Wow, that is a tough go! Sending you prayers for healing and that you tolerate your protocol well.
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Smile On!
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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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Old 09-18-2010, 07:19 PM   #9
'lizbeth
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Re: Spreading

Sally

Im adding my prayers too.
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 09-18-2010, 07:54 PM   #10
caya
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Re: Spreading

Sally,

Sending prayers and big hugs from Canada.

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
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Old 09-19-2010, 03:28 AM   #11
karen z
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Re: Spreading

Sally,
My thoughts and prayers are with you. Stay strong and take things one day at a time.
K
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Old 09-20-2010, 06:47 AM   #12
Mary Anne in TX
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Re: Spreading

Sending love and prayers to you this morning Sally! ma
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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.
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Old 09-20-2010, 04:42 PM   #13
Ruth
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Re: Spreading

Sally ~
I am so sorry to see this. Please know that you are in my thoughts.
Ruth
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[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~

Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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Old 09-20-2010, 07:29 PM   #14
flynny
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Re: Spreading

Sending you positive thoughts during this frustrating time for you.
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-Sarah-

Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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Old 09-22-2010, 07:29 PM   #15
sally
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Re: Spreading

I would like to thank everyone for their information, thoughts, and prayers. I have had a rough time absorbing the brain mets. Now with the cancer being in my upper stomach area it is so visible and painful and big! It makes it so much scarier. Stay strong and hopeful and thanks again. Sally
__________________
Dx March 2004 HER2+ er/pr+ 8/16 + lymphnodes mets to the liver Stage IV / 6 cycles of TCH and 33 rads . NED Continued Herceptin 3 years w/ Femara. Tumor markers start to rise in Jan of 2007 and swiched to Tamoxifen. August of 2007 found more mets to liver and lymphnodes outside of liver. Went on Tykerb/Xeleoda--spots on liver gone found large mass between intestines. March 2008 started TCH. Stopped Carboplatin due to allergy. Still on Taxotere and Herceptin. Nov 2008 mass is gone. 3 new spot on liver and one on spine. Radiation on spine. tykerb/gemzar for liver mets. PET in April 09 showed shrinkage still a little activity, continue tykerb/gemzar until Aug 09. PET showed new spot on my spine more on my liver and a bunch of enlarged lymphnodes in upper chest. Start Adriamycin Sep 09. more radiation on spine . April 2010- Still on Adriamycin 3wks on 1 wk off and zometa every 28 days. PET -May 2010 showed progression. Starting Herceptin/Navelbine on June '10
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Old 09-23-2010, 02:52 AM   #16
Trish
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Re: Spreading

Wishing you well from Australia Sally.
Love Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 09-23-2010, 04:51 PM   #17
CarolynME
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Re: Spreading

Sally,

I have been thinking about you and I am praying really hard that this combination of medicine works for you, and you will not have any allergic reactions.

Love,

Carolyn
__________________
1/10 Diagnosed with IDC; 3.7 cm tumor
3/10 Left Radical Masectomy; 2 /16 nodes positive - Grade 3 ER+/PR-/HER2+++
4/10 BRCA1 and BRCA2 both negative
4/10 Pet Scan showed another node .07mm positive on the internal mammary area
4/10 ALLTO Trial - randomized for Arm 4 - Taxotere/Carboplatin and Herceptin only (no Tykerb) Began 6 cycles Taxotere/Carboplatin (every three weeks) and Herceptin weekly for eighteen weeks and then every three weeks until the end of April 2011
Radiation to begin 9/2010
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