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08-10-2010, 11:32 AM
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#1
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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A Rainbow of Hope FINALLY!!!!
Just a quick update on my new reports...it has been since Mid May since the Avastin was stopped, and the pericardial window surgery. I have been on the Metronomic chemo since end of May..Cytoxan daily and Methotroxate 2x a day on Mondays and Tuesdays.
Just had scans and tumor markers done (CEA)
In May my CEA was 16 (normal is <3)
My CT's showed the mediastinal, hilar, axillary and nodes in my neck all enlarging, and wrapped around my pulmonary artery causing severe occlusion. Also, left lower lung lobe collapse and atelectysis in both lungs.
Today, all nodes have shrunk (shrinkage IS good!!!)
The pulmonary artery is barely occluded...some nodes are GONE, both lungs clear, and my CEA is 3.4, just a smidge over normal.....
I am feeling amazing....even got rid of the gray hair! Have been walking a mile a day with no problem, and spending as much time with my Mom as I can as she is now in Hospice at home.
There is always hope.....I will never see NED, and always need treatment, but hey, I am on cloud 9 right now...and i'll take this news and hold it for as long as I can!
__________________
"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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08-10-2010, 11:37 AM
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#2
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: A Rainbow of Hope FINALLY!!!!
Dearest Shelia,
That is such WONDERFUL news! I'm so happy for you.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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08-10-2010, 12:32 PM
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#3
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: A Rainbow of Hope FINALLY!!!!
Sheila, if one person deserves good news it's you! I have a big smile on my face. I am so happy. 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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08-10-2010, 12:43 PM
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#4
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: A Rainbow of Hope FINALLY!!!!
Great News Sheila - I am thrilled for you!!!
Thanks for sharing, we love good news like this!!
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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08-10-2010, 01:33 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: A Rainbow of Hope FINALLY!!!!
Sheila this is such WONDERFUL news for you. Doing a dance around the room for you.
__________________
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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08-10-2010, 01:51 PM
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#6
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Member
Join Date: Nov 2009
Location: UK
Posts: 24
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Re: A Rainbow of Hope FINALLY!!!!
Thank you for such fantastic news. It gives hope all of us. You are an inspiration.
Wish more blessings to you and many happy years.
Peace and Love
Galina
__________________
Dx 11/06 age 60
2.8cm Grade 2
ER+++/PR+/HER2+++
R. mast., 5 FEC, 6 Taxotere, 35 radiation
11 mth Herceptin
while on Arimidex 11/09 recurrence to bones (widespread), liver
5 rad. on spine, 6 Taxotere, Herceptin, Zometa
while on this, progression
Xeloda, Zometa every 3 weeks
07/10 stopped Xeloda - doesn't work
having just Zometa, waiting for another treatment
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08-10-2010, 01:55 PM
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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: A Rainbow of Hope FINALLY!!!!
Sheila!!! I'm holding my breath and so very very glad to hear it.
My onc wasn't using metronomic therapy when I was dx'd but the Wellness Center onc was, back in 2002. I went with conventional therapy. Four years later at a presentation by my conventional onc, he mentioned that he was very much interested in metronomic tx. A major change for him.
It is so good to hear that things are going so much better with you!
A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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08-10-2010, 03:28 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: A Rainbow of Hope FINALLY!!!!
Oh, Shelia. I am so glad to hear your good news.
Amelia
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08-10-2010, 03:43 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: A Rainbow of Hope FINALLY!!!!
Sheila --- This is great news I'm so HAPPY for you!!!! This is a break you've deserved for a long time --- may this status last for a long long time on this tx. Interesting I just saw my onc. yesterday & asked about metromonic tx for myself. he said he wasn't impressed with it that he hadn't experienced that it ever "panned out". I'll be sure to share your news when I see him again 8/19 to discuss my next tx.
SO glad you are feeling well and have such good shrinkage! Sorry that life is still so hard with your mom in hospice now. You are always in my thoughts., 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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08-10-2010, 03:55 PM
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#10
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: A Rainbow of Hope FINALLY!!!!
I'm so happy for you Sheila, and hope you do see NED one day, but for now we'll take whatever good news we can get!!! 
__________________
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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08-10-2010, 03:57 PM
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#11
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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Re: A Rainbow of Hope FINALLY!!!!
Sheila,
This is amazing. The walking is wonderful. You look great too!
Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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08-10-2010, 04:42 PM
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#12
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: A Rainbow of Hope FINALLY!!!!
Sheila; I am so happy for you and glad that you are enjoying every minute of your new found good health and hope that it lasts forever. Your new hair style/color looks nice.
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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08-10-2010, 04:46 PM
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#13
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: A Rainbow of Hope FINALLY!!!!
YES! Doing the fist pump in the air for you!
Tumor load - in reverse.
Fast forward to T-DM1 and NED. With this kind of result they won't want you for T-DM1 ...
Thank the good Lord above that you found some "old" drugs given a "new" way that are working the "right" way.
Your spirits are UP, and this will help you through this time with your mother.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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08-10-2010, 05:07 PM
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#14
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: A Rainbow of Hope FINALLY!!!!
Awesome News!!!
Congratulations!
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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08-10-2010, 06:05 PM
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#15
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Re: A Rainbow of Hope FINALLY!!!!
Yay Sheila!!!!!!!!!!!!!!!!
Amazing!
Love, Hope, Peace, Carolyn
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08-10-2010, 06:28 PM
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#16
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: A Rainbow of Hope FINALLY!!!!
Sheila, that is such great news! I'm so glad these drugs are working for you. I took both of them almost twenty seven years for my bc (no HER2 testing then), along with vincristine and 5FU. It's neat that something that's been around so long is still doing some good!
You look terrific. Love the hair!
Barb A.
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08-10-2010, 06:36 PM
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#17
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Re: A Rainbow of Hope FINALLY!!!!
SheilaGirl!!! I was doing the happy dance for you over on
Facebook ... now I'll have to dance here too .... that is fabulous
darling ... simply fabulous.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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08-10-2010, 06:46 PM
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#18
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: A Rainbow of Hope FINALLY!!!!
Oh Shelia what wonderful news!
__________________
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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08-10-2010, 07:39 PM
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#19
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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: A Rainbow of Hope FINALLY!!!!
Oh, Sheila, I am so glad I signed on tonight to share your wonderful news! Wow, there really is something to the metronomic chemo Rich so often writes about. The hair looks great and you sound so ebullient! I am so happy for you!
__________________
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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08-10-2010, 07:55 PM
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#20
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: A Rainbow of Hope FINALLY!!!!
This is absolutely fabulous news Sheila !!!!!!! Congratulations !!!!!!!! I think a little celebration is in order. Hugs to you and hugs to your Mom. Enjoy your time together.
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