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05-22-2010, 09:44 PM
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#1
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Update on our sister Sheila
I visited Sheila today in the hospital and have her permission to post this message. Notes from her are in my hand. Please remember she is the nurse not me! Sheila went in for treatment (Avastin and Herceptin) on Tuesday, 5/18. She told the onc. she was feeling the worst she had felt since diagnosed with no energy, shortness of breath and pain. The Onc. decided to move forward quickly. She was admitted to the hospital that afternoon. On Wednesday, 5/19; she had an Arterd Pulmonary window done with a chest tube inserted to relieve the fluid. They drained 1000 cc of fluid from around her heart. She is hoping the chest tube will be removed tomorrow, Sunday 5/23, and will be allowed to go home.
She is off Avastin, and will be doing Cytoxin and Methodroxsate along with Herceptin once she recovers from the surgery.
Sheila is an inspiration to us all. In spite of all her issues she is positive, calm and courageous with a sense of humor that won't quit. We have all gained from her knowledge and positive attitude. She is loved and I am honored to call her my girl friend.
Your thoughts and prayers would be appreciated at this time. As she improves she will be checking the site. Let's surround her with well wishes. She would love to hear from all her Her2 sisters.
This disease sucks, really sucks, but it has brought us all together. I will be forever grateful to Christine and Joe for having the foresight and knowledge to establish this unique family. We rejoice and sympathize with each other on our journeys and have hope that a cure will happen. May it happen soon.
Blessings to all,
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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05-23-2010, 06:07 AM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: Update on our sister Sheila
Donna thanks for the update on Sheila, prayers will continue for her.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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05-23-2010, 07:27 AM
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#3
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Update on our sister Sheila
To our dear sisters, Sheila and Donna....
Sheila so glad to receive an update from your executive assistant. I would presume that draining such a large amount of fluid from around your heart will dramatically impact your energy levels. Your heart must have been working overtime!! What sweet words...going home...bustin out of the hospital has to feel good.
I am so glad that Donna was able to stop by to visit and provide us with an update. Agreed on all fronts....Sheila is funny and wonderful and I'll be anxious to see more posts. This site is wonderful, priceless and it is because of the caring people such as Donna that makes it special.
Thank you both for the update. Wishing you continued strength.
Love...Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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05-23-2010, 07:48 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Update on our sister Sheila
donna,
thanks for the update on sheila. i got a message from her that she was out of icu - which scared me because i didn't know she was IN! She is an unbelievable warrior and I too am honored to call her my friend. Adding her to my most fervent prayers.
you're right, this disease sucks, sucks sucks.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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05-23-2010, 08:16 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Update on our sister Sheila
Sheila is one of our "Wonder Women" for sure and Donna, you're an angel for keeping us current. She's amazing and always an inspiration.
Sheila, I hope the new stuff works it's magic and gives you some good relief quickly. I send my love and prayers to you. ma
__________________
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.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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05-23-2010, 08:49 AM
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#6
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: Update on our sister Sheila
Sheila,
I wish you returned good health. I am praying for you.
Kris...
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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05-23-2010, 09:00 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Re: Update on our sister Sheila
Sheila, I know you are a "patient" here, but to me you have the truest qualities of a nurse to the core... thanks for making sure we know what is happening, as we do care so much about you....
A.A.
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05-23-2010, 09:20 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: Update on our sister Sheila
Thank you, Donna, for keeping us posted! Sheila is truly a warrior woman! I will add my love and prayers and good wishes to all the others on this board. We will be watching for updates, and looking forward to Sheila's next post with the good news that she is back to recovery.She is truly loved and admired. Hugs, Tricia
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05-23-2010, 09:30 AM
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#9
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Update on our sister Sheila
Oh Sheila not you in the hospital. I hope they let you go home and that you are feeling better. I also hope you are not suffering. I just can't stand that idea. You are such a wonderful women. Sheila, we need you back in the group, fighting with us. I can just send you Love and tell you I am with you.
Donna, thank you so much for your post. I hope we will have good news soon.
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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05-23-2010, 10:19 AM
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#10
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: Update on our sister Sheila
Thanks for the up date. Shela is a blessing to us all with her strength and fight she has. We are a family with the care and loving that goes with it.Shela we are sending hugs and blessings as you win again!!
Taks care, 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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05-23-2010, 10:42 AM
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#11
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Update on our sister Sheila
Donna,
Thank you for this update. Please let Sheila know that she has my constant thoughts and prayers. She is truly admired by many here and I hope she knows just how much she is loved. We are in awe of her.
Best,
Karen
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05-23-2010, 11:26 AM
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#12
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Update on our sister Sheila
Donna, thanks for the update on Shelia. I am holding her close in prayer.
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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05-23-2010, 11:45 AM
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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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Re: Update on our sister Sheila
Thank you Donna, for keeping us posted.
Sheila, you are and always have been an inspiration and source of solid, grounded advice and support. Your strength will carry you and our thoughts and prayers will bouy you as you rebound once again.
My prayers are with you,
__________________
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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05-23-2010, 11:47 AM
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#14
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Update on our sister Sheila
Sorry to hear this. Do they figure the Avastin was causing/contributing to the fluid buildup?
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05-23-2010, 11:53 AM
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#15
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Update on our sister Sheila
Donna,
Thanks for letting us know about Shelia. I am sorry to hear she is hospitalized and having so many problems.
I have my fingers crossed for Sheila. I am also sending a get well hug to Sheila. I hope the rest and then the new drug plan will help alot. We will welcome Sheila back when she is ready to drop by and visit us. Both of you take good care of yourselves.
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05-23-2010, 01:48 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: Update on our sister Sheila
Hi Shelia,
I hope that this procedure helps you feel better soon. My thoughts continue to be with you. I hope that you will have the opportunity to use T-DM1 soon. It is very tolerable, and it just might clear up those nodes for you.
Best wishes,
Barbara H.
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05-23-2010, 02:57 PM
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#17
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Update on our sister Sheila
Thanks Donna, Sheila is a lady very close to my heart and I am sorry to read she had to be admitted and have treatment.
I'm hoping by the time she reads this she'll back at home recovering and feeling a lot better.
Hurry back Sheila!!!!  xx
__________________
Tricia
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.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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05-23-2010, 05:04 PM
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#18
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Guest
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Re: Update on our sister Sheila
StephN checking in from deep in the heart of Texas.
What a wallop when I opened the site to see this news. Although she has been complaining and hoping the fluid would resolve on its own.
My prayers adding in with all the others for a successful outcome to follow.
So keep your courage up and wave off the cancer gremlins.
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05-23-2010, 05:34 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Update on our sister Sheila
Thank you for this update on Sheila. I knew this procedure might be likely but was surprised to read it had already happened and maybe she's going home today. I hope this will relieve all the shortness of breath issues to be rid of all that fluid. My prayers for Sheila for a great recovery. As others have said, Sheila, you are truly an inspiration to me and to many. Pam
__________________
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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05-23-2010, 05:43 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Update on our sister Sheila
My thoughts and prayers are with you fine lady.
Get well and get home! My arms surround you.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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