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09-23-2009, 07:28 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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Sorry
Hello, I'm sorry I haven't posted here, but I'm not quite sure how to be help accepter rather than the helper.
Things are not going well. While I've started on a new chemo which may or may not be working and supposed to add a second after my whole brain radiation - the biggest thing is my brain.
The one spot I had zapped before (about 3 months) is growing again. They won't do it in the U.P. because of the type of radiation I had before and they won't do it in Chicago because I had the wafers put into the tumor that was very close by.
I had a special brain scan yesterday...we will see what comes of it.
It isn't that I haven't wanted to post here. It is just that I didn't feel I could be of any help to anyone else. I finally made up my mind that I was going to post today and try and keep up agian. After all, I could be of help to someone else even if I just "listen".
Anyway, sorry about the delay, I just couldn't help myself.
__________________
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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09-23-2009, 09:02 AM
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#2
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Sorry
Barb,
You are helping just by posting. Your strength and determination to beat this is an inspiration to me and I am sure others. I hope that a new plan is made quickly to deal with the brain mets. Please let us know how you are doing.
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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09-23-2009, 09:46 AM
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#3
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Sorry
Barb you are always an ecouragement. Even when you need encouragement. We're all here for each other through good and bad.
Sending love and prayers to you sweet sister.
Thanks for sending us your post. We missed you.
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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09-23-2009, 09:47 AM
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#4
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Sorry
Barb,
I am sorry you felt your participation could not be of help to anyone else. Nothing could be further from the truth. This disease distorts what "normal" is for all of us. Your "normal" is likely the "normal" for many others. Just showing up is more valuable than you will ever know.
Best of luck to you with whatever new treatment plan you embark on.
Hopeful
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09-23-2009, 11:30 AM
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#5
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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Re: Sorry
Dear Barb,
Listening is good and very welcome.
I am sorry to read you're not doing well on the new chemo. Hang in there. Many hugs and prayers heading north for you.
btw, my husband is heading to our cabin in the UP today.
Hugs,
Dana
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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09-23-2009, 11:46 AM
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#6
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Sorry
Hi Barb, I'm sorry to hear your news and really hope things improve soon for you 
__________________
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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09-23-2009, 11:59 AM
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#7
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Re: Sorry
Barb, everyone, everywhere needs someone to listen. We will be here and ready to lend an ear whenever you need it. I would like to say welcome back but not under these circumstances. Just that we're glad you know where you can come.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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09-23-2009, 12:26 PM
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#8
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Sorry
Barb,
I am glad just to hear from you. You have always been an inspiration to me. God Bless You.
Amelia
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09-23-2009, 04:41 PM
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#9
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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: Sorry
Barb,
Never feel your fight isn't OUR fight! That is what this site is all about. I am happy to sympathize with your travails and rejoice in your triumphs whatever comes your way. For now I will pray you respond well to your current treatment and that fear and despair stay at bay.
__________________
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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09-23-2009, 07:18 PM
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#10
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Re: Sorry
Barb - glad you are back...no apology we are just so happy to hear from you. We will pray that the new chemo will take care of it and helpfully keep some fear away. You are in my thoughts.
Hugs ~ Ruth
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09-23-2009, 07:34 PM
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#11
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Senior Member
Join Date: Sep 2005
Posts: 290
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Re: Sorry
Any more talk like that Barb, and I'm going to have to come up
there and slap you silly...lol. I for one, have always learned something from hearing about anyone's experiences with this stinking rotten disease. Each story is a little piece of the puzzle for someone else. Keep relaying your latest problem, and we will all worry about it for you so you have more time to relax. I never felt this was a "take a penny, leave a penny" message board. Please don't ever hesitate to post. I think all would agree. And if they don't, I'll be handing out some more justice.
Sincerely,
Tom
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09-23-2009, 07:40 PM
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#12
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Sorry
Barb,
Chime in when you feel like it, and just listen when you don't.
I hope things turn around for you ASAP.
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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09-23-2009, 08:26 PM
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#13
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Sorry
Sending you a big hug. I am hopeful that your scan will show shrinkage. Stinkin' cancer.
Hugs,
Lexi
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09-23-2009, 08:30 PM
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#14
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Sorry
Feel free to share your concerns whenever you need to do that. This is the place where everyone understands the ups and downs of breast cancer. Take care and keep going no matter what happens.
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09-23-2009, 08:41 PM
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#15
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Re: Sorry
Hey Love, I relate to this entire post, especially that you feel you have nothing to offer....but, even listening is enough. There are things that can help you. Please give me your phone number, life is busy and this will be best for me. I emptied my mailbox so pm me. Do not give up hope. Calling you will also allow me to open different windows as you take notes rather than me go back and forth and recheck, etc. PM me now and I will get back to you ASAP....Hospice has been involved here. I am so sad and tired...HoHum......talk in person soon.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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09-23-2009, 08:51 PM
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#16
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Sorry
Barb,
Glad to hear from you, but sorry about the persistent brain met. Let us know about the special scan and what your onc is recommending.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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09-23-2009, 08:53 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Sorry
Barb,
So many people told me that the best thing to do for your friends during this journey, is to let them help however they can. It makes them feel better.
So if we friends can be of help---by listening, responding, caring and supporting----its the best thing you can do for us. So the helper continues to help.
Thanks for letting us help you, for sharing your thoughts, fears, life with us.
We are here for you.
Praying that new treatment will be the answer.
__________________
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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09-24-2009, 01:43 AM
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#18
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Sorry
Barb, you are right to reach out for support. You are part of our very special members so don't feel "sorry" as if you were bothering us. I am thinking of you. Please post when you have the results of the brain scan.
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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09-24-2009, 04:58 AM
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#19
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Sorry
Barb
We are here for YOU to listen, give suggestions, prayers or a big hug...you have given so much to others on this board, never feel guilty about coming here...just posting is bringing something to the table....you are going through a rough time right now...we are here to be your support, your guidance, your love.....hoping that you get a plan that will turn things around and begin to feel better.
__________________
"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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09-24-2009, 09:42 AM
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#20
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Re: Sorry
just sending some extra prayers!!!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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