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Old 11-06-2007, 06:38 AM   #1
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
How much is too much?

I've been on weekly Herceptin since March and three weeks on and one week off Taxol added to that since June and was expecting to finish the Taxol part in early December. My onco now thinks I should stay on a little longer.

This is how my day went today:

I gave a sample for my blood work this morning and was promptly called in for my check-up. My oncologist had printed out results from my Ct scans of July and of last week to show me how much the Taxol (an effective drug in controlling head lice) had shrunk the tumors in my lungs. This was encouraging.

He asked about all the possible side effects and examined my hands, checked for lumps, listened to my breathing, looked carefully for any swelling and asked about the general quality of my life to determine if the treatments have been affecting my quality of life. We discussed extending the Taxol treatments until I notice more side effects and he typed in a schedule for up to 26 treatments in the computer.

So far, the only side effect that is worrisome is the gradual numbing of my feet. For some reason, my hands haven't been affected yet (knock on wood) but my feet feel like I've been skiing all day and my old (not very warm) ski boots were buckled too tightly. This isn't really a problem as I've always been a little clumsy and as long as I wear my SAS shoes or other well cushioned sports shoes, I'm OK. If this neuropathy advances to a point where it changes my gait, I will probably stop the Taxol and, per the original plan, keep up with the Herceptin. There goes the 20 time countdown goal.

I asked to see the bone scan results from a few weeks ago and he showed my that my skeleton had a little illumination on a spot on my upper left rib cage and another spot on my right hip that weren't there last November. As I have no symptoms (pain) the current course of action is to stay on the Taxol/Herceptin menu and keep an eye on the spots. These scans detect trauma (breakdown and regeneration) to bones and it might not necessarily be metastases to my bones and could be a number of things (I am a little clumsy and could have bumped my hip and the rib cage spot was radiated two years ago...). I need to research a little more. I tend to think that it is cancer spread, but feel that the Taxol is probably working on this too. Not shattering news, but still a little dismaying.

So, I'm wondering about other women's experiences in deciding when enough is enough. I know the Herception will keep the cancer from spreading further if the Taxol doesn't wipe it all out anyway, I'll stay on the Herceptin even after the Taxol stops.
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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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