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12-24-2008, 09:08 AM
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#1
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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Report Was Wrong-----another Tumor
So Last Week, I Get The News That My Scans Were Clear. I Feel Like I'm A ''Walking Miracle''. Yesterday When I Went To See My Doctor, I Knew Something Was Wrong As Soon As He Walked In The Room. This Last Treatment Cleared Up The Problems Of The Last Few Months But He Tells Me He Received Another Report From The Radiologists. They Didn't See It At First When They Sent The First Report To My Doctor, But Now They Have Found A New Mass In My Lower Abdomen, 3 Cm In Size. Needless To Say I Had A Total Melt-down. I Can't Put Into Words How I Feel----But I Know So Many Of You Know. He Wants To Start Me On Avastin & Navelbine (not sure of spelling).
__________________
SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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12-24-2008, 09:28 AM
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#2
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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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Uggh!! What were they thinking when they sent the report over w/o being sure and why did they reread this after sending it?? Don't they know how we need to know the outcome, be it good or bad, so that we know what we are up against? Don't they realize that those reports 'tell' us how to feel, either complete relief of what is the next course of our journey? Or that you friends know how to feel about those results??
I am so sorry that this mistake happened to you and right before the holidays, although no time is good for this to happen. I want to just hold you right now and cry along with you. I am writing this post in RED because that is what I see when I read this post!
Now that being said, we know just what kind of fighter you are. Now that you know the true results, you will be able to plan for the next course of action. You are a strong and determined woman whom I am proud to know. Please know you will have happy thoughts in my heart as Ed and I spend Christmas together alone. It will be quiet here in our home this year but thoughts and prayers will flow for our family here.
Think to the future, stay strong, and know that we are right here for you. Now I have to tell Ed this news. He too was relieved hearing how well you were doing and I know will not be happy hearing what they have done to you. Lots of love, positive healing thoughts and plenty of prayers.
Sending a prayer right now for your well-being to get the party started!>>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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12-24-2008, 09:38 AM
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#3
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Sheila, that makes me so mad! I'm mad that it's happening and mad how it was revealed to you. I send you hugs and prayers. I, like Marie, truly believe in your fighting ability. No one should be in your shoes. Lots of love to you as you adjust to this new battle. 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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12-24-2008, 11:45 AM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Report was Wrong
Oh no !! It is good that they re checked the films. Even though it is not good news, it is better to find out now rather than later. Take a moment to cry, scream or do whatever you do when you need to melt down and then get up and keep going. Hang in there. Let's hope for a healthier 2009.
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12-24-2008, 12:04 PM
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#5
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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My heart goes out to you. I had the same thing happen to me when I was originally diagnosed. Nothing like thinking you are in the clear and then getting that phone call. The good thing though is that it was reread and found. Now you just have to keep your chin up and fight with all you have. We are all praying for you!
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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12-24-2008, 12:04 PM
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#6
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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It is so wrong that this happened this way. But, since it did, I agree with Elaine that it is certainly good that at least they caught it.
After I was diagnosed I was struggling with what treatment to persue. And I did not understand my pathology report very well so I made an appointment with the pathologist to explain it. As a result of that appt, he had a second look at my slides and told me "I found more cancer than we initially thought was there!" He would never have looked otherwise and I would never have been given this information which contributed greatly to my decision to have chemo...
So some clouds have silver linings. In this case, you can begin a plan of attack that much sooner. After you have the meltdown to which you are entitled.
God bless and keep the faith...
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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12-24-2008, 12:40 PM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 823
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Sheila, I am so very, very sorry to read about this. You will be in my prayers.
__________________
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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12-24-2008, 01:50 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Sheila,
What a horrible turn of events - this stupid disease has a way of twisting things, and us. I would have had a complete meltdown as well. So instead of getting fantastic news, you got a mixture of great news on the prior problem and information on a new issue. As devastating as that news was, thankfully it was not completely overlooked. Although I know you were not really looking to change horses, Avastin and Navelbine should be a good combo now that you do have to "saddle up".
By the way, you are still a walking miracle in my book. Keep putting one foot in front of the other, and remember to breathe.
Much love
Chris
__________________
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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12-24-2008, 04:19 PM
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#9
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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Thank You Everyone For Your Kind Words. I Am A Little Better Today. I Will Pick Myself Back Up & Pull Myself Back Together. I Have Always Endured My Treatments With Little Side Effects And Whats A Few More Treatments. I Feel Like I Could Do Chemo Standing On My Head.
__________________
SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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12-24-2008, 04:24 PM
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#10
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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I am so sorry that this has happened to you, I know you are devistated. You will beat this like you have the other, I am praying for you to get 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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12-24-2008, 04:59 PM
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#11
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Shelia,
I am glad you are feeling better. I can just tell you are a fighter. It is good that the other tumors are gone. Now, on to the last one.
Holding you in prayer and healing thoughts.
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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12-24-2008, 09:34 PM
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#12
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Sheila.....I'm happy you are feeling better and happy your attitude is strong and ready for the fight. I pray this new chemo regimen will be as "kind" to you as the others.
Sheila, I'm truly sorry this news had to come to you....after hearing such good news. What an incredible let down. On a positive though, as others have said, thank God it was found so you can "kick it's butt" and "KICK IT" You will.
Love to sweet sister. Prayers surround 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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12-24-2008, 10:19 PM
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#13
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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 to hear about your bad news following your good.
I am glad they didn't miss it and allow it to progress further before they caught it.
I am hoping you will be able to fight it. I hope they can find just the right combo so you can kill it.
I will think of and hope for positive results for you.
Barb
__________________
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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12-26-2008, 10:35 AM
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#14
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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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Well Sheila, hearing how much better you feel makes me smile. Terrible boo-boo on their part and a let-down but it is done. You know what to do from here on out. Stay strong my little fighter, we are right behind you!>>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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12-26-2008, 11:43 AM
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#15
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Sheila,
I'm sorry to hear about the incorrect report. At least you have been having minimal side effects from your treatments, and I pray that you continue that way.
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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12-26-2008, 06:15 PM
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#16
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Sheila, how awful you got the all clear and then had this devastaing news to deal with. I know you'll keep fighting and thankfully and have won so far and I pray you continue to do so.
__________________
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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12-28-2008, 01:13 AM
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#17
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Hi Sheila,
So sorry to hear of the change in reports like that. Nothing like getting blindsided with a big kick in the butt.
We are all there for you for you to get back in there a fight.
hugs....
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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12-29-2008, 11:34 AM
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#18
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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You are in my prayers, Sheila. You are strong and will fight this as hard as you can, I am sure. Sending positive vibes your way.
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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