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Old 03-26-2009, 08:40 AM   #1
julierene
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CT is more "Dense"?

So my tumor marker fell 50 points down to the 70's just one month ago. My CT, however, shows more dense tumor in my liver. The stuff in my bone remains the same. My last CT was 2 months ago. I don't know what to think of this, and my onc is just speculating what to do in each scenario. If the TM test is lower, then we stay the course. If the TM is higher, then we move to Avastin Ixempra. My options for treatment seem to be narrowing and I have to wait till Friday. Man, I am scared.
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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 03-26-2009, 09:11 AM   #2
chrisy
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Julie,

I saw your posts on the BearMan thread, but wanted to respond here.

You said you are waiting for the TM's and if they are down, then the more dense liver spot is necrosis. Another way to get a better read on it would be to get a Pet/CT. Something to think about for the future.

Your onc's comments about herceptin "either it works or it doesn't" concern me. True, the cancer can escape herceptin alone, but still enhance the effectiveness of a chemo. I suspect the same might be true with Tykerb. The 2 work differently so one might work if the other doesn't, but my oncologist feels strongly that you always want to have a her2 targeting factor in the mix.

Scary stuff, but her2 status can change - you might consider getting that reassessed - and if the cancer is still her2+ that makes the case stronger to push for a her2 component in the therapy.

But, that's all plan B...I think plan A (the change on the CT is necrosis) is gonna be the one.

Keeping fingers crossed for you
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 03-26-2009, 10:18 AM   #3
Mary Anne in TX
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Julie, I'll keep you in very positive thoughts this week and in my prayers. I agree with Chris about keeping the her2 component in the mix. At my very first appointment when my onc laid out the plan of action, he also laid out a "what if" plan. If one chemo didn't work with herceptin, he had a plan for which ones to try with it next.
Best wishes and keep believin'. ma
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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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Old 03-26-2009, 12:30 PM   #4
julierene
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If the TM's are going up with the HER2 blockers + some chemo drug, then they aren't working. I have been through several combos that didn't work. I haven't given up on them yet, but if they don't work, I don't get the reason for continuing on them. Avastin may not be HER2 targeted, but HER2 disease is usually very vascular. I know mine is from all the signs.

For the PET, I asked about that, but it won't tell us more than a TM would at this point. It will light up, but it won't tell us if it shrank or grew. I think the TM will tell us what we want to know. Those have been very accurate with me. Any thoughts?
__________________
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 03-26-2009, 12:40 PM   #5
Mary Anne in TX
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It's like a huge puzzle trying to get all the ingredients right. Surely do wish they had that test for checking to see which chemo worked before we took it! Much love to you, ma
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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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