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Old 04-30-2007, 09:09 AM   #1
Andi
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Join Date: Mar 2006
Location: IOWA
Posts: 243
Thumbs down Bad Scan

I went in Friday for a CT scan and was feeling very optimistic as I have been feeling good, but when my results came back it showed significant disease progression, popping up in some new places(not the birthday present I was hoping for). I am now going to switch to Tykerb/Xeloda and have also started with Zometa. Since it was late on Friday afternoon, the insurance company didn't give the immediate approval for the Tykerb, so I am hoping to start sometime this week. I am interested in any thoughts anyone may have and also if there is any body out there with a similar situation as mine that has not responded to herceptin as hoped. I appreciated all of the tykerb information that those of you who are currently taking it have shared.
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Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 04-30-2007, 01:31 PM   #2
julierene
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Location: Illinois
Posts: 327
Yes, I think I am on the boat with you. Some would say 11 months of Herceptin would be great. But looking back, that one liver lesion has been there THE WHOLE TIME! I was hoping Herceptin would do better for me.
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Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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Old 04-30-2007, 01:44 PM   #3
MichelleMoon
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Join Date: Oct 2006
Location: Chicago
Posts: 36
No big Herceptin run for me either

I've been taking Herceptin since June '06. First with Taxol and now with Xeloda/Tykerb. I had about 4 months on Herceptin alone before my lung tumor woke up again. I hoped to get so much more. My FISH test was 2.7, barely HER2+. I wonder if this has anything to do with my results. Who knows. No one has figured out who will do well. Maybe Tykerb will provide a longer break for us.

All the best,
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Stage 2 '99, triple negative, 5 nodes involved
mastectomy, AC + T, rads, '01 TRAM flap
Stage 4 '06, lung mets, ER/PR-, HER2++
07/06 - 11/06: Taxol + Herceptin to 'strong partial remission'
11/06: Herceptin every 3 weeks indefinitely
01/07: brain mets, finished WBR, NED in head!
04/07: Xeloda and Tykerb for lung met progression
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Old 04-30-2007, 04:19 PM   #4
Joy
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Location: Ft. Collins, Colorado
Posts: 546
so sorry Andi

Yes that was a really crappy birthday present, even a toaster would have been better. I'm frustrated for you and hoping that the next approach zaps that junk. Know that you are loved and prayed for.
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with love and gratitude,
joy

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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Old 05-01-2007, 08:30 PM   #5
Andi
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Join Date: Mar 2006
Location: IOWA
Posts: 243
Michelle and Julierene lets hope the tykerb will do for us what the herceptin wasn't able to. Joy - thanks for your kind words and thoughts, I always appreciate your comments.
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 05-02-2007, 05:19 PM   #6
chrisy
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Location: Central Coast, CA
Posts: 3,207
Well, POO.

Sorry to hear your dumb cancer has escaped the herceptin. Hopefully the Tykerb/Xeloda will slap it back down quickly and without mercy.
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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 05-03-2007, 11:30 AM   #7
Andi
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Join Date: Mar 2006
Location: IOWA
Posts: 243
Chrissy - I hope your combo is working for you.
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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