Re: Completely Oddball Question (from a Complete Oddball)
Hi again all!
All these bits and pieces of our stories are fascinating, although a bit confusing. If I can ask....
Lisa, what caused you to lose weight in the first place. You said you went on chemo and are gaining weight "back".
Irene, when were you diagnosed? Has anything changed since?
To all/anyone - have you all gotten sick, not been able to eat, on chemo? For how long? Just when dosed, or for a few days, through a whole series? Or is it the cc itself causing the problems?
Anyone on oral chemo? Xeloda? Does that make you sick? My onc seems to think that taking oral chemo is "better" but I'm not sure why... other than "convenience" by not having to go in and be poked, etc. To me, having to take 8 pills a day on a schedule is VERY inconvenient!
I'm currently on Xeloda, and have been since February 08. I take 2000mg, 2x /day. Evidently that's a healthy dose. I've taken Gemcitibine & Carboplatin, followed by Gemcitibine & Taxol - which was the only one that made me feel a little sick and of course lose my hair. Then 16 weeks of no RX, and now, as I said, the Xeloda. None of the chemos caused ANY shrinkage. They ALL seem to cause fatigue.
Irene, If you try a chemo, you don't have to assume it will make you really sick, at least that's not been my experience, and that's one person! Who knows if/how much they have weakened my system though. Each of the intravenous cocktails were stopped after two series (4 or 5 sessions). They were stopped because of no shrinkage and my first onc said to "save" them if they in fact were effective in slowing/stopping growth. But who knows?
The big thing for me was in FEB one of my tumors did grow a bit. I don't remember exactly now, but it was 10ths of a cm. (not a lot). BUT it was the first time I showed measurable growth and that was after almost 4 months with no treatment at all.
I'm beginning to wonder too, as you've mentioned, if I should just stop treatment and see what happens. But, unlike Jeff, I've had no surgery, and I don't know if cutting it out, or most of it, slowed things down, or if it was slow-growing in the first place. Without surgery, I'm more afraid to try it (again). Given that the Xeloda doesn't affect me other than fatigue....
Anyway, my CT scan is next week, so we'll see how that's going. My last CT showed no change, this one will be after 5 months of Xeloda - that should say something! My new onc said I could take a month off if it's still no change, but maybe I can risk a longer period of time, I dunno. I HATE that I've not had 20 yrs of medical training, but I'm the one who has to decide this stuff!