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Old 05-16-2012, 08:04 PM   #1
DeenaH
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Join Date: Apr 2010
Posts: 129
Afinitor/Herceptin/Tykerb

I'm starting this combo tonight. I'm already on Hereceptin/Tykerb (along with Xeloda, but it didn't work). I can't seem to find anyone else outside of a trial on this combo (I don't think any trials included Tykerb either). Here's to hoping it is my magic bullet! God knows nothing else has worked.

Is anyone else on Afinitor?
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March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 05-17-2012, 10:25 AM   #2
GracePang
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Join Date: Jul 2010
Posts: 42
Re: Afinitor/Herceptin/Tykerb

Hi Deena,
Interesting combination of Her2 drugs. Would like to know how you respond to this. Please have us updaed.
I am thinking to join a trial with Afinitor for brain tumors; but afraid to leave Tykerb + Herceptin which I am currently taking. I didn't know we could have these three drug together. Is Afinitor approved by FDA?
Grace
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Old 05-17-2012, 11:45 AM   #3
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: Afinitor/Herceptin/Tykerb

I believe Affinitor is an FDA approved drug, but not for breast cancer. So a doctor could prescribe it "off label", but I have heard it is difficult to get insurance to cover it. There are lots of trials out there - but it is so hard threading the needle to qualify!
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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 05-17-2012, 09:29 PM   #4
DeenaH
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Join Date: Apr 2010
Posts: 129
Re: Afinitor/Herceptin/Tykerb

Chrisy is right, Afinitor is approved for renal and kidney cancer. There are studies showing it can help reverse resistance to AI's and Herceptin. I had to battle my insurance company for 2 1/2 months to get it, but I finally did. I'm hoping it was worth the battle!
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 05-17-2012, 09:30 PM   #5
DeenaH
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Join Date: Apr 2010
Posts: 129
Re: Afinitor/Herceptin/Tykerb

There are trials, but nothing close to me. I think you may also have to take chemo with it, and you can't take Tykerb (which I refuse to give up).
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 07-26-2012, 05:22 PM   #6
JGarrett
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Cool Re: Afinitor/Herceptin/Tykerb

Afrinitor has just been approved for treatment of Advanced HR+, HER2- Breast Cancer. Doc is thinking of putting me on Tykerb, Xeloda, & Afinitor -
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