Hi Krissi~
Sounds like you and I are walking parallel paths...
I was also dx'd Stage IV @primary dx, with liver mets, and have ridden this rollercoaster through it's terrifying highs & lows and even managed some calm periods of the "new" normal.
I just want to encourage you to keep the faith, stay positive as you are, turn to us here for knowledge, encouragement and a soft place to fall.
I'm coming up on my 10th year with this Stage IV disease, as are a handful of our amazing sisters here. And while it sounds so daunting - a DECADE - I often find myself in awe of the incredible resilience and wisdom of the human body & spirit.
I've just completed 15 rounds of WBR for 8 spots found in my brain - 8 weeks prior I had an MRI that showed one 2mm spot, but the subsequent follow up MRI shocked us with 8 spots - 2 larger ones in my brain stem & R temporal lobe, then the others tiny.
I feel like I tolerated the treatment well, but it's hard to know if I feel so off-kilter because of the zaps or the decadron. I'm starting a 15 day weaning schedule off the decadron and am looking forward to these side effects going away - the constant fixation on food, the blurry vision, the irritability & edginess, and this weird combo of feeling tired but jittery. Oh and the chubby cheek moon face. I just don't feel like myself or look myself and I'll be glad when I start feeling normal and focused and motivated again.
I hope you get through these last WBR zaps without any further complications and that when you resume the AC that it continues to knock back and hold stable any other systemic stuff going on.
Hang in there & 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