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Old 05-04-2007, 09:46 PM   #1
fauxgypsy
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Thumbs up Exciting news from PET scan!

I am 51. I was diagnosed with infiltrating ductal carcinoma in early Feb. '07. Her2+++, HR+/PR+, nuclear grade 3 of 3. The lumpectomy found two tumors, one was 1 cm but was not invasive, the malignant 4 cm tumor did not have clear margins. A PET scan showed numerous lesions in my liver. Since then I have had two rounds of chemo on a four week cycle.

week 1: carboplatin, herceptin, and taxol


week 2: herceptin, taxol
week 3: a larger dose of herceptin and the taxol

week 4: no treatment

I have been able to continue with most of my normal activities, just using more moderation. Being self employed I have had more freedom to adjust my schedule. I have continued to work in my garden, planting flowers and vegetables. I have a couple of days a week that I am very fatigued but that is not unbearable. So far all my blood counts have been pretty normal. Potassium was a little low this week, as was my red blood cell count. But just barely below normal. I still have hair, though it has gotten thin. I was beginning to wonder if my doses were high enough.

Thursday I had another PET scan. In the first one, my breast lit up all around the lumpectomy scar and my liver, in the words of the doctor "looked moth eaten", there were places all through it. In this last PET scan there is no cancer. Nothing. When the oncologist told us this my husband thought he was saying that the PET scan was defective. I thought he was saying that my liver was clear. He had said previously that they weren't sure about the liver. The lesions were so diffuse that they did not think they could find them in a biopsy. But nothing showed up. Anywhere.

I am amazed. I had no idea that any treatment could work so well and so fast. I know that this is not considered a cure, I am not even sure if this is NED. I am almost afraid to believe it. I feel blessed. Has anyone else had an experience similar to this?

Leslie
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Old 05-05-2007, 07:20 AM   #2
Lolly
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Leslie, I just want to say congratulations on your fabulous PET! I'm sure you'll hear from some of the others on this site who've beaten back extensive liver mets with Herceptin combined with various chemos; there are quite a few! You celebrate!

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 05-05-2007, 10:36 PM   #3
chrisy
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Leslie - what terrific news! You must be on cloud 9! That T/C/H combo is a great one and I'm so glad to hear you had such a fabulous response. Keep on doing what you're doing - living your life and ENJOYING every minute of it!

Much love
Chris
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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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Old 05-05-2007, 10:53 PM   #4
Patricia
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Wow Leslie,

That is amazing and wonderful!!!! Congratulations!

Hugs,
Patricia
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age 37 @ dx 7/21/05: IDC 1.5cm, grade III, Stage 1c, ER /PR+, HER2+,
7/29/05: Partial Mastectomy
dx 8/15/05: Papillary Thyroid Cancer
9/15/05: Total Thyroidectomy
A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
7/29/07: 2 years NED :)
8/6/07 Oopherectomy (Lupron no more! :-)
Aromasin & Estring plus Synthroid and supplements
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Old 05-06-2007, 06:15 AM   #5
MJo
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Congratulations. I don't see why new drugs couldn't wipe out all cancer cells in a Stage IV person's body. Maybe we aren't there yet, but I trust we are close. There are three Stage IV survivors in my support group -- BC, Lung and Ovarian. The BC and Lung survivor are currently NED. The ovarian survivor isn't NED, but feels healthy and is planning to be around for at least another decade. I believe I'm cured. But if I should recur in the future, I expect to survive it with a good quality of life. Congratulations again to you. I'm out there in the garden planting too. Hard work but good exercise.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 05-06-2007, 08:39 AM   #6
tousled1
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Leslie, Congratulations on such wonderful news! Whatever you're doing seems to be working. Keep it up
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 05-06-2007, 11:02 AM   #7
Jean
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Leslie,

How absolutely wonderful Love hearing your good news. I had the TCH combo also...many others on this board have also had it...I wish you continued success. Please keep us posted ...sending you lots of love.

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 05-06-2007, 04:22 PM   #8
Caroline UK
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Smile

Leslie,
What amazing news. I can see that you hardly dare believe it...but it really is wonderful, and I'm so happy for you.
I've also been out in my garden planting, maybe it's the gardening that's the cure!
Big hug to you, I'm going off to bed with a big smile on my face, thank you for sharing your news with us.
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Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years

Considering reconstruction, maybe soon...
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Old 05-06-2007, 04:36 PM   #9
fauxgypsy
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Thank you all so much. I am so tired from Friday's chemo that it has been hard to feel celebratory. This has been a whirlwind of a year so far and I am feeling overwhelmed. It will be better in a day or so. The carboplatin just takes me down for a couple of days.

Leslie
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Old 05-06-2007, 04:39 PM   #10
cassie
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Smile Good news

Leslie

So great to hear your new Keep up the good work and believe it is true
I'm 20 months NED and hope to go strong.

Hugs to you! cassie
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Old 05-07-2007, 09:11 AM   #11
Joy
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such great news

I know you are tired, but how nice to be tired and know that this junk IS WORKING! Here's to a long relationship with NED!
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with love and gratitude,
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dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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