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12-30-2010, 10:52 AM
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#1
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Senior Member
Join Date: May 2006
Posts: 3,142
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12 years and still counting
Happy New Year !! Hauoli Makahiki Hou !!
I couldn't let this occassion pass without wishing all of you peace, good health and joy in 2011 and beyond.
I was diagnosed in early January, 1999. A doctor told me I had 6 months to live at the beginning of 2000. I remember that day. I did not say anything. I just laid on his exam table quietly, but in my heart and mind I decided that was not going to happen to me !!!!!!!!
I didn't know how I was going to accomplish that task that day, but I figured it out as I went along. I learned as much as I could, was not afraid to challenge doctors when it was appropriate to do so and found ways to get the things I needed. This journey has not always been easy, but I kept going even though I changed the route a couple of times.
I changed doctors when I needed to do that. On the other side of the coin I am still working with one or two doctors I first saw in 1999. Thankfully they are willing to travel with me through this journey.
I am still learning and putting one foot in front of the other. I promised my doctors I will be showing up for check ups when I am 90. That is my goal.
Never give up !!!!!!! Determination, believing in the possibility of success, learning as much as we can, refusing to give up, and being proactive and aggressive are the keys to long term survival.
All the best to each and everyone of you !!!!!!!!!! Never give up !!!!!!!!!!!
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12-30-2010, 11:04 AM
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#2
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: 12 years and still counting
Jackie,
Happy New Year! And many more years of NED! You encourage me!
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 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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12-30-2010, 12:48 PM
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#3
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: 12 years and still counting
Me to !
Ellie
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12-30-2010, 01:01 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: 12 years and still counting
Big congrats to you ElaineM!! Thanks for sharing, gives hope to all of us..
Happy New Year!!
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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12-30-2010, 01:13 PM
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#5
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Senior Member
Join Date: Jul 2010
Posts: 42
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Re: 12 years and still counting
Elaine,
Happy New Year! such an encouraging mesaage. Would love to know your history of fighting the disease (I am relatively new to the site and sorry for not knowing).
Grace
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12-30-2010, 02:02 PM
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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: 12 years and still counting
Wow Elaine, what an encouraging post to read as I logged in this evening and many congrats to you on reaching this milestone!!!
Like Grace I also would love to know your past treatment and diagnosis, did you have herceptin at any point???
Thank you so much for posting and sharing this and a very Happy New Year to you!!! 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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12-31-2010, 03:53 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: 12 years and still counting
Elaine = what a beautiful message of your determination and success! Congratulations on 12 years. Keep counting........all the way to that 90 year old check up date and beyond.
__________________
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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12-31-2010, 04:12 AM
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#8
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Senior Member
Join Date: May 2010
Posts: 432
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Re: 12 years and still counting
All the best Elaine
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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12-31-2010, 05:32 AM
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#9
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: 12 years and still counting
Congratulations Elaine...12 years...what a milestone....you give such inspiration to those of us behind you.....can't wait for you to celebrate 25!!!!
__________________
"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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12-31-2010, 09:01 AM
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#10
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: 12 years and still counting
Congratulations Elaine and many more!!!! Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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12-31-2010, 10:10 AM
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#11
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: 12 years and still counting
Elaine, congratulations, wow, I envy you. Were you er - or er+? what treatment did you have?
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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12-31-2010, 10:32 AM
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#12
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Senior Member
Join Date: Mar 2010
Location: Mechanicsburg, OH
Posts: 109
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Re: 12 years and still counting
Congratulations...stories like yours keep me going and give all of us so much hope! Happy 2011.
__________________
~Anna
DX April 2009 age 40
IDC Triple Positive
7 of 14 nodes positive
Lumpectomy May 2009
Port May 2009
AC done in Sept 2009
T done Dec. 2009
Herceptin (should finish Oct. 2010)
Mastectomy January 2010
Radiaition x 33 done April 2010
Tamoxafin for five years
Herceptin done!
Still clear May 2011
3 years out May 2012, all good!
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12-31-2010, 03:25 PM
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#13
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Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
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Re: 12 years and still counting
Elaine-
What an amazing post and story! I LOVE it!!! I am printing it out and saving it to re-read when I need to (which might be often). Thank you so much for sharing your success. It is great to read!
Maureen
__________________
Maureen
My loves
IDC & DCIS, HER2+++ Diagnosis: October 1, 2008 - Tumor: 6.8 centimeters, never showed on mammograms
- ER-/PR-
- November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
- Stage IIIc
- Lapatinib Clinical Trial start: November, 2008
- Surgery: May 5, 2009
- Started Herceptin: May 19, 2009
- Started Radiation (33 rounds): June 10, 2009
- September 2009: Moved to Michigan to be closer to family
- 12/09 - still on Herceptin until May 2010
- August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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12-31-2010, 05:52 PM
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#14
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: 12 years and still counting
Elaine,
Happy New Year to you! I was feeling pretty down today. I just read the cure magazine and they have a new ad for Herceptin. For the treatment I had (TCH), it says it reduces the rate of recurrence by 33%. It really bumed me out. You have really inspired me tonight. THANK 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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12-31-2010, 06:04 PM
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#15
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: 12 years and still counting
Happy New Year!
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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01-01-2011, 01:08 PM
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#16
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: 12 years and still counting
Aloha,
Thank you for your kind words everyone.
Some of you have asked about my stats and/or treatments. Discussing my stats and treatments was not my purpose in writing this essay.
My purpose was to share something else with you.
It takes alot more than medical science to be a long time survivor of a major health problem. Medical science is important, but medical science is only one part of the plan.
I sincerely hope that each and everyone of you can find the things inside of you that will help you be a long time survivor.
All the best to you in 2011 and beyond.
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01-01-2011, 06:09 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: 12 years and still counting
Elaine,
thank you for sharing your post. Along with perhaps many others, I particularly needed that today. Then as I was scrolling down to reply, I saw your SECOND post on the thread. I think I needed that one even more.
Thanks, happy new year, and God bless.
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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01-02-2011, 07:47 PM
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#18
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: 12 years and still counting
Elaine,
Congratulations!!!!
You are a beautiful role model for all of us.
Your strength and love of life is beautiful.
Thank you for sharing your journey with us.
May the New Year continue to bring you joy.
hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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01-03-2011, 12:40 PM
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#19
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Senior Member
Join Date: Mar 2010
Location: Thornhill Ontario
Canada
Posts: 266
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Re: 12 years and still counting
Hi Elaine. What a wonderful inspiring message. I want to wish you a very happy healthy new year as well. You are always a bright spot on the site, have helpful kind messages. Must say you live in a beautiful part of the world. I went to Hawaii about 25 years ago and fell in love with your home. still trying to get my husband to go there keep telling him about the amazing golf etc. I told him if we stay a few nights in L.A. it would break up the flight. I think he is just not crazy about the direct flight from Toronto. Anyway thanks again Elaine wonderful news Love Lois
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara
November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2
January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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01-03-2011, 04:32 PM
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#20
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Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
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Re: 12 years and still counting
Greetings from freezing PA. Today was my onc appointment and my bloodwork was perfect and the node under my chin was just a node under my chin..... and that is not where you usually find recurrence. It is hard to find it now as it has gone down. He feels it was my body fighting against the bronchitis my husband had. I do not need my ct scans done untill spring He said, you do not have cancer so stop worrying! The place where my cancer has recurred has always been skin mets on my mastectomy site and my Dr. says if it should return that is where it most likely would be. I feel so much better. I had myself really stressed out over this. Thank you for sending me prayers & good wishes. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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