Oh Sheila~
I'm so sorry you're going through this. You are one of the most knowledgeable, empowered, compassionate sisters on this board and I know you have your eyes peeled on all your options. I also know that you feel secure with your care team & that they are working hard on your behalf to find another treatment combo to knock this disease back again.
My greatest hope is that you will find reasonable, affordable access to Pertuzumab, and from there you & your docs can decide what to combine it with to give you the biggest impact.
Know that you have my prayers & thoughts, as well as that of your family of friends here.
Stay strong and when you can't, lean hard. We are 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! Counts rebounded, resumed chemo
6/25/12-Counts dropped again, hold chemo