Hi Friends~
I'm nearly 4 weeks post my 15 rounds of WBR and I'm still baffled by how much time I spend in bed. It was a long process weening off the decadron, but as the decadron dose got less and less, I could feel the fatigue more prominently.
I can manage to get up and go teach & train clients, sometimes for up to 4 hours, but as soon as I get home, it's back in bed. And sleeping like I've been up all night.
I'm just still so out of sorts - my entire head is burnt & peeling, from the base of my skull to eyebrows/forehead and even behind my ears, which makes wearing a wig an extra hassle.
Then there are lots of other little annoyances, that I can't seem to wrangle. Strangely, now I'm not fixated on food - in fact, the opposite. I don't have a taste for anything, so I often find myself so hungry that I'm nauseas. Then when I do settle on something to eat, it just doesn't taste right & don't eat much.
My skin all over my body is so dry that I've scratched so much it looks like heat rash. And then the area above my right clavicle, the area where the surpaclav node that melted away with the Cytoxan, is very full and puffy. Could this be the result of the decadron, or can lymphadema affect that high up to the collarbone?
I'm still on daily Methotrexate and Cytoxan, just finished 7 days of Cipro for a UTI.
I have my 1st Brain MRI follow up since finishing WBR on Wednesday and am hoping and praying that we have good results.
Then the following Tuesday I have the annual procedure to replace the ureteral stents.
So lots of stuff on my plate again. Hoping for good outcomes so that I can coast for a little. My arms are getting tired from all the swinging I've been doing these past couple of months!
Keeping 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
Re: This post-WBR fatigue is NO JOKE!
Linear Mode
