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05-20-2010, 08:44 AM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Bad news, no longuer NED
the biopsy came back with atypical cell consistant with metastatic carcinoma and apparently the ultrasound shape of the nodes was already suspect. Scan are booked (neck ab and pelvis CT to see where it is located.
Please send me prayers and wishes, right now not sure how I feel.
__________________
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
Last edited by fullofbeans; 05-20-2010 at 10:46 AM..
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05-20-2010, 09:05 AM
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#2
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: Bad news, no longuer NED
I hear you. I am with you. I'll keep listening.
Love, Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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05-20-2010, 09:08 AM
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#3
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Re: Bad news, no longuer NED
I'm so sorry FOB. I know you'll take some time to stew, vegetate,
scream .... whatever ... and then you'll come out fighting. You're a
tough nut and I know you will be able to beat this back. We're all
here for you. Have a good cry if you need one and then come out
fighting.
__________________
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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05-20-2010, 09:45 AM
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#4
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Bad news, no longuer NED
I am so, so sorry to hear this news.I guessed this may be the case when you had the ultra sound as it was a replay of my experience with my axillary nodes.
I know you will get to NED again soon and guess you will be searching the net for your options.
Hope you get your ct scan soon then the action you need to take will become clearer.
Thinking of you
Ellie
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05-20-2010, 10:45 AM
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#5
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Senior Member
Join Date: Jun 2009
Location: Mississippi
Posts: 253
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Re: Bad news, no longuer NED
Crap. You'll be in my prayers. Keep us in the loop.
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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05-20-2010, 11:44 AM
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#6
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Bad news, no longuer NED
I am sorry. Don't give up. Keep putting one foot in front of the other. You have done very well so far. You will find a way to get past this detour in the road of life.
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05-20-2010, 12:04 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Bad news, no longuer NED
Hey girl, I just want you to know I'm praying for you and believing that NED is ahead of you again. But this time is so hard. Sending you love and prayers each day. You're tough and smart and a fighter. 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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05-20-2010, 12:23 PM
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#8
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Bad news, no longuer NED
Think positive---it may just be in your neck nodes. That is how it ended up for me (determined by a Pet/CAT scan). But remember what Dr. Slamon told me---you MUST get a biopsy of the recurrence to redetermine the characteristics of the tumor to include the ER receptor status and a FISH. If they didn't get enough tissue via the needle biopsy to perform these tests, you will need to have an open biopsy of the nodes.
After my results were back showing the recurrence was even more strongly HER2 positive and still ER negative, Dr. Slamon put me on Herceptin plus 750MG daily of Tykerb. Because tumor markers have never shown anything about my tumor, I have had a Pet Scan every three months to see how this protocol is working. Each time the size of the nodes was smaller and the SUV went down. The last one was read NED. I have been on this protocol for 14 months. I am telling you this because my general oncologist where I receive my Herceptin infusions wanted to immediately put me on chemo and said "I have never heard of this protocol" when I told him what Dr. Slamon prescribed.
Again, contact me via e-mail with any of your questions. I know how scary this is and my heart goes out to you. Stay Strong!!!!!
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05-20-2010, 12:42 PM
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#9
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Bad news, no longuer NED
Hi again
Nancy is quite right in her advice. When I recurred my second opinion onc INSISTED that they check the status of the nodes. Mine had remained exactly the same but we know that some can and do change status.
One of the problems Nancy for us in England is that tykerb is NOT approved by NICE (the body that decides what we can and can't have-bean counters)so the only way to access it is usually via a cliincal trial. To the best of my knowledge we don't have one yet of herceptin and tykerb. The whole set up is very maddening!! We also don't get PET scans. Again you either have to pay a lot privately or have one as part of some reserch or trial.I constantly harrass my onc about both these issues. He's sympathetic but says it all comes down to funding.
Ellie
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05-20-2010, 12:46 PM
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#10
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Bad news, no longuer NED
Sorry about this confirmation of your fears, Beanie.
And Nancy! That is great news. Just the sort of news that our Beans here needs to hear.
I am feeling that the 3 nodes involved may be all. As I recall some of the other gals here who had affected nodes did NOT have raised tumor marker CA 27-29.
Any way you can get the HER2 serum test over there?
Nancy, are you using this marker?
My best thoughts and prayers ALWAYS coming your way.
__________________
"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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05-20-2010, 01:04 PM
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#11
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Bad news, no longuer NED
StephN---Dr. Slamon has not ordered the use of the Her2 Serum test for me. I will ask him his opinion of this test when I see him in October and let you know what he says. My understanding is that FISH is the gold standard to measure whether a tumor is her2 positive.. On initial diagnosis, my FISH score was 4. On recurrence, my FISH score was 20.
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05-20-2010, 01:51 PM
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#12
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Bad news, no longuer NED
Sorry to hear this FOB - but I agree with Pink - I know you will put your Big Girl Panties (the pink ones) on and come out swinging - You are a Warrior Woman!!
Please keep us posted.
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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05-20-2010, 02:11 PM
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#13
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Senior Member
Join Date: Dec 2006
Posts: 415
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Re: Bad news, no longuer NED
Oh FOB, I'm so sorry about the news.
I had a couple of supraclav nodes pop up on the L side
and the radiation onc did an amazing job isolating them
and zapping them away.
I've been so inspired by your successful treatment with the chemo-embo to your liver...gives me much hope & optimism for my own treatment coming up on June 8th.
So don't you lose hope.
You can beat this monster back again.
We're here to encourage and support you as you do!
Keep the Faith~
Jessica
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05-20-2010, 02:14 PM
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#14
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Senior Member
Join Date: Aug 2009
Location: Owasso, OK
Posts: 185
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Re: Bad news, no longuer NED
So sorry to hear about this FOB, but please know you are in our thoughts and prayers. Stay positive, get your boxing gloves on, and know that you have a huge, strong, support group with you every step of the way.
Hayley
__________________
Hayley
Oklahoma
3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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05-20-2010, 02:42 PM
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#15
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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Re: Bad news, no longuer NED
SO sorry about this news. Positive energy ~~~ and prayers ~~
Love,
Dana
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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05-20-2010, 05:14 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Bad news, no longuer NED
FOB I am really sorry to hear this disappointing news. I'll be thinking of you and watching to see what treatment you'll be doing to zap this back into NED. 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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05-20-2010, 05:50 PM
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#17
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: Bad news, no longuer NED
Dear fullofbeans,
I am very sorry to hear your news. Praying hard for you to find the right treatment to return you to NED status soon.
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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05-20-2010, 06:18 PM
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#18
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Bad news, no longuer NED
FOB, so sorry to read this. I will pray that it is contained to your neck nodes. You'll be able to do this.
Stay strong.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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05-20-2010, 08:14 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: Bad news, no longuer NED
I am totally bummed! This disease sucks beyond expression! Damn! I'm mad!!!!! This is not the end of the journey for you, FOB, just a fork in the road. We are all here for you, behind you when you falter, ahead pulling when the hill gets too steep. You are so not alone. Praying for stalwartness in the face of this storm...
__________________
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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05-21-2010, 04:09 AM
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#20
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Bad news, no longuer NED
Thank you all for your wishes prayers and warthm..now wondering what the CT scan will reveal, to be honest I am feeling like it is not very likely that it will be confined to the node since I have this persistent sore throat and hoarseness my lymph nodes are palpables so unlikely to affect my voice box.. i feel rather hopeless and a bit fatalist right now but strangely calm almost resigned I suppose, I guess I am still under the shock.
__________________
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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