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Old 10-08-2007, 05:42 AM   #289
Kathy S in Tokyo
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Join Date: Mar 2007
Location: From Syracuse, NY but living in Tokyo, Japan for 26yrs
Posts: 132
Hi Kat,

My newest oncologist always discusses the treatments and lets me know how awful things could be so I can decide which is worse, the cancer of the the degeneration due to the drugs. We carefully watch and decide when to kick in with the heavy artillery (20 Taxol treatments now because I needed to shrink the cancer in my lungs enough to breath a little last June) and when to wait and watch the cancer which will never go away while maintaining the absence of its growth with weekly Herceptin forever or until my heart protests even slightly. He warned that the first Herceptin treatment might cause a severe reaction, even death, and that if I coughed even a little during the first I.V. I'd have to stay at the hospital overnight or for a few days. I had to mentally confirm the status of my underwear before signing the release for that treatment, just in case I ended up in the emergency room. He asks at every visit about neuropathy (here the big deal is not being able to keep one's slippers on dur to numb toes, so culturally oriented to Japan!). I suppose I'd feel differently if I knew I'd ever be NED, but it seems that the expectations for stage IV are that I can probably have a nice long life by living with cancer and striving for "stable." I appreciate the onc.'s concern for balancing treatments with quality of life at this point. It sure would be nice to have a day or two when I forget to even think about cancer though.
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Kathy S in Tokyo (44)
11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started
Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
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