HER2 Support Group Forums - View Single Post - Is there benefit in surgery for stage iv's

jml · 09-17-2012, 12:45 PM

Hi Vonny~
So sorry to have to welcome you and Lorna to our community, but know we are a strong, scrappy bunch and are here to offer whatever guidance or support we can!
Just wanted to share a thought that I don't think anyone else has brought up yet...
In order for Lorna to have surgery I think it would be likely that her onc/surgeon would take her off Herceptin for a period of time before surgery, and then not resume again until a few weeks post surgery. My feeling would be that I wouldn't want to be off treatment for any period of time so early into my Stage IV diagnosis. I would want to continue on agressive systemic treatment to treat the entire body for as long as possible and continuing with Herceptin, Zometa and even rads as needed.
Remember, a BC tumor in the breast is not instrinsically life threatening - it is when the disease metastasizes to the vital organs that it then becomes truly dangerous.
However, localized treatment to decrease the tumor load on the entire body is something to consider.
These are the "options" that we are offered. There is no "right" answer - we just have to get educated, trust our medical teams and go with what is the best fit for ourselves & our conscience.
Also, please remember, even though your daughter is Stage IV she has many treatment combos/options available to her, especially with the approval of Pertuzumab & the pending approval of TDM1. That's a very good thing!
I was diagnosed @33yo with Stage IV disease at primary diagnosis, with liver mets and have been surviving this disease for 10years. Be aggressive, fight hard and try to feel comfortable & optimistic about the choices you make, no second guessing!
We are all here to offer you our opinions, support, thoughts and prayers to help you & your daughter stay strong, and when you can't, lean hard on us. We're here for you~

Keep the Faith~

Jessica
Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR

6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!

09-17-2012, 12:45 PM	#14
jml Senior Member Join Date: Dec 2006 Posts: 415	Re: Is there benefit in surgery for stage iv's Hi Vonny~ So sorry to have to welcome you and Lorna to our community, but know we are a strong, scrappy bunch and are here to offer whatever guidance or support we can! Just wanted to share a thought that I don't think anyone else has brought up yet... In order for Lorna to have surgery I think it would be likely that her onc/surgeon would take her off Herceptin for a period of time before surgery, and then not resume again until a few weeks post surgery. My feeling would be that I wouldn't want to be off treatment for any period of time so early into my Stage IV diagnosis. I would want to continue on agressive systemic treatment to treat the entire body for as long as possible and continuing with Herceptin, Zometa and even rads as needed. Remember, a BC tumor in the breast is not instrinsically life threatening - it is when the disease metastasizes to the vital organs that it then becomes truly dangerous. However, localized treatment to decrease the tumor load on the entire body is something to consider. These are the "options" that we are offered. There is no "right" answer - we just have to get educated, trust our medical teams and go with what is the best fit for ourselves & our conscience. Also, please remember, even though your daughter is Stage IV she has many treatment combos/options available to her, especially with the approval of Pertuzumab & the pending approval of TDM1. That's a very good thing! I was diagnosed @33yo with Stage IV disease at primary diagnosis, with liver mets and have been surviving this disease for 10years. Be aggressive, fight hard and try to feel comfortable & optimistic about the choices you make, no second guessing! We are all here to offer you our opinions, support, thoughts and prayers to help you & your daughter stay strong, and when you can't, lean hard on us. We're here for you~ Keep the Faith~ Jessica Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met 1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets 2) ISIS 2504 + Herceptin - 6 mos, partial response 3) Taxol + Herceptin x 13 weeks to NED! NED for 1 year 9/04 - Single liver lesion recurrence Taxol + Herceptin - on/off to beat back lesion 12/05 - R Hepatectomy; Liver NED until 2009 3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy. 12/06 - L mastectomy + reconstruction through 8/07 10/07 - Recurrence - supraclav nodes 4) Gemzar + Herceptin - on/off controlling nodes thru 9/08 - 7wks Rads to supraclav nodes 10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents Back on Gemzar + Herceptin, but no longer responding. 5) 05/09 - Tykerb + Xeloda - partial response x 5 mos 6) 10/09 - Xeloda + Herceptin - no response, disease progresses 7) 2/10- Ixempra + Herceptin - partial response x 12 wks. Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study. 6/10 - Novalis to treat brain met - SUCCESSFUL! 8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion. 9) 8/10 - Screened & Started TDM1 EAP Immediate response, disease in belly responds dramatically. 2/11- questionable progression of lung nodules Discontinue TDM1 10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated. 11) 7/11-Discontinue PI3Kinase + Herceptin study; Disease progression - 2 small lesions in colon – docs have never seen this before in BC 11) 8/11 –Start new combo Halaven+Herceptin 10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin... 10/18/11 - Scanxiety time -1st scans since starting this regimen Good interval response, continue on H+H! 10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease? Re-scan in 8 weeks. 1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion. R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up. 12)Herceptin+ metronomic Cytoxan + Methotrexate. …on a hope & a prayer. Only chemo I haven’t been on is Taxotere. Hurry up Pertuzumab & TDM1! Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more. 1/18/2012- 8 new spots in 8 weeks since last Brain MRI one 2cm spot in brain stem, one 2cm spot in R temporal lobe. No symptoms, THANK GOD! 1/25/12 – Start WBR x 15 rounds 2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US! 2/14/12 – FINISH 15 rounds WBR 6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break for 3rd week due to low counts. 6/15/12 – Yay! Resume chemoJ 6/25/12 – Chemo break again due to low counts L 6/28/12 – PET Scan & Brain MRI this week… NED IS BACK!!! NED in the HEAD, NED in the BODY!