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Old 05-27-2010, 06:41 AM   #1
Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
stage 1V long term anyone?

I have just been told cancer has come back. Tumour cells in chest area. Having scans for bones, in pain a lot of the time. Is there anyone on this site who has survived for more than 3yrs at stage iv with similar problems. I am going on taxotere/herceptin soon.
Delaney, dx 2008, er-/pr-/he2+. a/c, taxol, 1yr tyverb.
mastectomy, 5/20 nodes at least.
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Old 05-27-2010, 09:04 AM   #2
Lori R
Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
Re: stage 1V long term anyone?

I fully understand what a blow it is when the cancer returns. But, you will find out how strong you really are. Believe me, you will pick you self up and head into battle.

When I was diagnosed 2 1/2 years ago, I was Stage IV. I've had one reoccurance and am currently NED.

The good news is that in the past 2 1/2 years, there are many more drug options available. There are also improvements in radiation and surgical procedures.

So....here I am...feeling great!!

You can do it!!!

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
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
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
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 05-27-2010, 09:34 AM   #3
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Join Date: May 2010
Location: Ireland
Posts: 271
Re: stage 1V long term anyone?

Thank you Lori. Thank you so much for your quick response. I wish I could start treatment now, immediately, think I can feel this disease eating away at me. Anyway, I'm not dead yet so will hope for the best.
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Old 05-27-2010, 10:31 AM   #4
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: stage 1V long term anyone?

That's right, you are not dead yet and there is much reason to hope for the best.

We all know the feeling of wanting to start battling RIGHT NOW. Taxotere/Herceptin is a good combo and can work very well.

As Lori mentioned, there are more and more options becoming available every year, so it's important to keep asking questions and arm yourself with knowledge as well as chemos.

Remember this is a marathon, not a sprint. And as long as we're still above ground, we will keep fighting!

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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Old 06-06-2010, 01:24 AM   #5
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Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
Re: stage 1V long term anyone?

I believe Andi was stage IV and that was MANY MANY yrs ago. She outlived her oncologist as well as her cancer facility. She is still doing really well and has stopped her herceptin last yr I think. SHe is an amazing person and one of my role models.

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction

6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
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