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03-19-2010, 12:13 PM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Feeling so releived..
Both my CT scan and back MRI (so it was a sciatica) were clean!!!! Still a NED phewww pheww pheeeeew. I was very aprehensive before going to hear the result this afternoon..
"Continue" is the word of the day.
It is also always difficult to post good news when so many are having mix results, and my heart goes to all of us. At the same time perhaps a newly diagnosed stage 4 can see some hope too like I did when I joined this board. I have been on remission from 6 liver tumour since the 5 Jan 2007..may it long continues.. feeling very grateful already.
Lots of love
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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03-19-2010, 12:25 PM
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#2
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Feeling so releived..
Good for you !! Enjoy the weekend.
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03-19-2010, 12:37 PM
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#3
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: Feeling so releived..
Great news, fullofbeans! Thanks for sharing. It is very important to hear the good news too since it gives us strength for everything else. Wishing you many many more years of NED status.
So happy for you!
hugs,
shobha
__________________
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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03-19-2010, 12:38 PM
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#4
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Feeling so releived..
Fullofbeans,
Glad to hear your good news.
Amelia
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03-19-2010, 01:42 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Feeling so releived..
great news, license to breathe easy!
__________________
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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03-19-2010, 02:40 PM
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#6
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Feeling so releived..
Wonderful news! We love NED and we love to hear about those who are dancing with him.
(NED means No Evidence of Disease)
Please, don't ever hold back on good news. We share the bad times, so we are entitled to the good times too! And I bet all our Angels love sharing it too!
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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03-19-2010, 03:50 PM
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#7
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Senior Member
Join Date: Jul 2006
Location: Newfoundland, Canada
Posts: 153
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Re: Feeling so releived..
Congrats!! Fantastic!! I hope you continue NED Forever. I was just dx with 6 liver mets also. Doing Xeloda, Herceptin and Aredia Hoping for NED with my scans in May.
Dawn
__________________
Dawn
Mar 2006Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 8 of 18 pos 03/14/06: Mastectomy 04/19/06 started Chemo adriamycin, chlophosphamide, taxotere 25 rads
Nov 1, 06: 3 years Tamoxifen, Herceptin (1yr)
Jan 2009 Femara mets to bone aromasin and aredia
June2009: Full Histerectomy
2/22/2010 6 spots in liver 2 mm-10 mm: switched to xeloda and Herceptin will continue with Aredia J
Scan February 2011 new onc, switch to abraxane
April 2011 NED clear organs, 3 spots on bone scar tissue.
Scans August 2mm spot on liver and lungs. now on to tykerb/xeloda
Dec 2011 scans nothing on lungs, liver down to 1 2 mm spot. j
une 2012 another spot on liver on to cisplatin/gemzar.
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03-19-2010, 04:05 PM
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#8
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Congrats!!
Full of beans..
... I had a Brain MRI on 2-17- just so apprehensive, thank God it came back clear. NED... I know what you went through.
Celebrate!~!!!!!!!!!!!!!
Love,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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03-19-2010, 04:35 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Feeling so releived..
Son happy for 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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03-19-2010, 04:47 PM
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#10
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Feeling so releived..
Good News is always welcome! Ceesun
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03-19-2010, 04:49 PM
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#11
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Feeling so releived..
Looks like it is time for some positive - actually negative - results from the scans here.
Very glad to share in the joy of your relief!
Just hope the sciatica will calm down and get taken care of now.
Also, Adriana had good news as well. Whoopee!!!
I will have a routine bone scan myself next Tuesday, but am not going for any real complaint - just been 4 years since I had one of those.
__________________
"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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03-19-2010, 04:55 PM
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#12
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: Feeling so releived..
Good news all around. Scans are sooo stressful.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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03-19-2010, 05:52 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Feeling so releived..
Very happy to hear your news. Continue!
__________________
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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03-19-2010, 06:11 PM
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#14
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Feeling so releived..
Thanks for sharing your good news fullofbeans!
and you too Adriana - May you both be NED forever!!
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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03-19-2010, 06:26 PM
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#15
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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: Feeling so releived..
Never feel sorry about posting good news. We rejoice with one another and cry with one another. That's our standard. Way to keep beatin' those odds!!!!!!
__________________
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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03-19-2010, 06:31 PM
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#16
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Feeling so releived..
Thank you for sharing your good news!!! It made my day.
Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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03-19-2010, 07:31 PM
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#17
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Re: Feeling so releived..
Looks like a good news day all around.
Hugs
Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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03-20-2010, 05:29 AM
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#18
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Feeling so releived..
Thank you all for your good wishes it warms my heart.
Adriana glad yours were clean too. Lori all the best with your ex-liver mets. Steph best wishes for your bone scan and also you know that nothing can happen to you because your story (an some of the other NED here like Christine) has been an inspiration to me, seeing people being NED after my Dx of liver mets and being told than I was unlikely to be around for too long was really what kick in my fight..
Lots of love to all of you.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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03-20-2010, 05:51 AM
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#19
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Feeling so releived..
Brilliant news. Just the tonic! Sorry sent PM before I read your thread.
Ellie
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03-20-2010, 09:30 AM
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#20
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Guest
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Re: Feeling so releived..
Yay!! Great news beans!! We all look forward to reading good news! So happy you are doing well.
Hugs,
Lexi
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