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Old 02-13-2010, 11:50 AM   #1
Emelie B
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PET Results

So, not what we had hoped for. I have mets in the liver, bone, lung and lymph nodes. Started treatment Thurs. with Herceptin, Taxol and Zomata. Will treat for 6-8 weeks and do another scan and see where we are.
Feeling very depressed about all this. Keep trying to be positive, but don't really feel it.
Keeping my fingers crossed we can get these things down and manageable, at least for awhile.
Have a great weekend everyone,
Emelie
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Old 02-13-2010, 12:36 PM   #2
Lien
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Re: PET Results

Oh Emelie, I'm so sorry. You must be so scared and confused! Mets are what we all fear most and now they have caught you. But as you know, there's a lot that can be done and I know of at least two women who beat mets and have been NED for over 12 years now. So there's always hope. And others have lived well for very long with mets. Perhaps some of the promising new treatments will be available to you in a few year. Let's hope treatment will bring you back to NED asap and for a long, long time.

Now take a deep breath and say after me: I'm going to be NED! Visualise the mets fleeing your body with their tails between their legs. Visualise the meds chasing them away, breaking them, kicking them out.

Hugs

Jacqueline
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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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Old 02-13-2010, 01:03 PM   #3
Mary Anne in TX
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Re: PET Results

Hey Emelie! Yes, you can lick this offender bunch of mets! Remember, you're part of a wild group of long distance runners who out do the odds year after year! Your fear and worries are normal...you just got the awful news that a battle must be fought, but you can do this. We'll all be here to cheer you on and the "smarties" will help you know what to do each step of the way! You can do it!!! I send you huge hugs and loads of prayers and best wishes for your journey. Much love, ma
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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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Old 02-13-2010, 05:30 PM   #4
tricia keegan
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Re: PET Results

Oh Emelie, I'm so sorry, but agree with Mary Anne that we all take inspiration from the long warrier's here that have fought this before us and give us hope and inspiration. Take a few days to allow the turmoil of emotions and come out fighting and I know you'll beat this xx
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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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Old 02-13-2010, 10:45 PM   #5
Faith in Him
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Re: PET Results

Emelie,

This news must be shocking and will take some time to adjust to. But as you know many women have fought mets for many years and others have reached NED. Here is always hope especially in the new treatments that are coming along. I'm sending prayers and warm positive healing thoughts your way.

Tonya
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 02-14-2010, 12:20 AM   #6
Chelee
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Re: PET Results

Hi Emlie, I am so sorry to hear you got bad news. I was told I recurred last Sept. to several areas myself. It's a big hit when you get news like that. Very scary and so overwhelming. The way your feeling is very normal and don't let anyone tell you differently. But as the others have said here...there are so many that have battled mets like yours and got back to NED/stable again. It does happen. I know that doesn't get rid of the emotion toll your going thur right now but know that we are here for you. Please keep us updated on how your doing...we really do care.

Big hug!

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 02-14-2010, 12:40 PM   #7
Shobha
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Re: PET Results

Adding my prayers for you, Emlie.

hugs,
shobha
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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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Old 02-14-2010, 12:47 PM   #8
ElaineM
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Wink Re: PET Results

I am sorry to hear your news. Please hang in there.
Whenever I receive bad news I come home and put it aside for at least 24 hours. I try not to think about it and do whatever makes me happy or relaxed for that 24 hours. I am usually refreshed enough and have enough energy and a clear head in 24 hours to start figuring out what I want to do about the problem. Maybe that will work for you. Take care.
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Old 02-14-2010, 04:44 PM   #9
mmoons
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Re: PET Results

Emelie-

I am so sorry about your news. Please know that I am praying for the perfect medical combo to get you back to NED. It sounds so easy to say "stay strong" but please do. Kick this crappy diseases a$$!!!!!

Maureen
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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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Old 02-14-2010, 05:06 PM   #10
Paty
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Re: PET Results

Emilie,

I join my prayers to the rest of our sisters so you can soon stop this mets with the right treatment. Best wishes, remember there is always treatment.

Paty
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Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 02-14-2010, 07:19 PM   #11
TriciaK
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Re: PET Results

Please know that we are all praying for you, Emilie! I second the idea of taking a deep breath and refusing to face the fear for at least 24 hours, doing something special for yourself, pampering yourself and letting others be there for you. I definitely believe in visualizing the cancer mets and cells being gobbled up by whatever you can imagine. It is so hard to be positive when you get such devastating news, but it will help you face it and fight it. I've learned in my 25+ years of fighting BC that when the bad news comes I can wring my hands and say in abject fear "Oh God, what do I do now?" or I can square my shoulders, look fear right in the eye, and pray courageously "Oh, God, what do I do now?" And when God gives you the answer, do it! I promise tht I will be praying for you, and I know many others will too, because that is what we do here! Hugs, Tricia
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Old 02-14-2010, 10:27 PM   #12
flynny
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Re: PET Results

I can't even imagine how you must feel right now, but just know that you are in my thoughts and I am sending you lots of prayers!
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Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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Old 02-14-2010, 11:11 PM   #13
Jean
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Re: PET Results

Emelie,
I am sorrry to read your post. Of course you feel upset.
But we have many ladies on the board (Tricia for one)
who has beaten the disease down for the last 25 yrs.

Think positive about your treatment - there are so many new drugs that are showing great results beating down those nasty mets. It is a real battle for sure....we all keep you in our healing prayers.

Kind Regards,
jean
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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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Old 02-19-2010, 10:14 AM   #14
juanita
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Re: PET Results

i can't add anything because i haven't been there, but i will add some prayers to the others.
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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