No news yet, but thank you everyone for your notes of support, peace and calm. Seems to be working because yesterday went as smoothly as expected. I didn't even have too much GI distress after drinking the contrast. And it helps to know the PET staff so well - after 10 years of seeing them every few months we've shared much about our lives and families and how they've grown and changed over the year. It's definitely a comfort.
Just to clarify a couple of questions/suggestions folks have made here. I have literally used and failed or progressed on every
Standard of Care BC therapy combo approved and available-Navelbine,Abraxane, Tykerb= Failed. TDM1, Taxol, Ixempra, plus many,many others, including 3 clinical trials=Progressed.
Yes, we can try other drug combos that are approved for other indications, but they would be off label and we would just be going on a wing & a prayer.
Pertuzumab is not available in a "compassionate use" program as it is already approved & available on the market, in addition the manufacturer of any drug still in clinical trial would have to initiate creating a compassionate use program, which involves a whole lot of FDA regulatory hoops to jump through, as well as an increase in production for the drug to be available to the clinical trials as well as the those accepted to the compassionate use program. This was one of the challenges for the TDM1 EAP - once the compassionate use program opened up they had to ramp up production at great cost, to accomodate the population of folks on the EAP.
The grim reality is that I have been fighting this disease for a DECADE. Actively fighting, actively on drug, with only short breaks from treatment due to logistics or bc my counts needed a break. There are not many of us who survive this disease long enough to "out grow" our treatment options - for that I'm amazed and grateful, but we are faced with a very unique dilemna.
So we wait with baited breath for new treatments & drugs to come to market to help us continue down this path of living with this "chronic" disease.
I hope one day soon we can all look to this disease as those with HIV/AIDS can and do - a disease to live with, carefully, mindfully, but for a long, long time.
Keep the Faith~
Jml
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 - resumed chemo bc counts rebounded!
6/25/12- back on chemo break due to lazy counts again
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