is it odd for tykerb se's to increase?

grandma2 · 10-12-2008, 12:38 PM

i think i'm starting week 6 or 7 now. at first it didn't really seem to do much to me. now i'm finding that i have more and more se's. not all of them, but gas, bloating and diarhhea. it's much better if i take fewer than 5 pills but since i'm off xeloda i hesitate to keep doing that. it's hard to leave the house cause i never know when it's going to hit and how many times. i am taking imodium. tomorrow onc wants me to try taking 1 xeloda in am and 1 in pm. i don't understand why we just don't wait for the 5-fu toxicitity test to come back but i can't keep arguing with her and i worry that while we're fooling around with this stuff, i'm just getting more progression. i'm praying that tykerb is killing the dam cells even without xeloda. any comments re the se's would be appreciated. i kinda thought as time went on the se's would diminish not increase. thanks, gm

koolmom · 10-13-2008, 08:20 AM

I have been on Tykerb/Xeloda for 18 months. I always had worse diarreha when not on the Xeloda for the week. Symtpoms came and went. Some days were not bad and then some days I had pretty bad diarrhea. Hope your problems get better!

doh2pa · 10-15-2008, 01:09 PM

Hi

I was on Tykerb/Xeloda for 8 months last year and had no SE's the first 4 months, but worsening SE's after that. I went off the combo for a while and then tried to add Tykerb back into my Avastin and Gemzar in July. It's like my colon REMEMBERED and within one day I was getting terrible bloating and gas. So with the blessing of my onc, we stopped for a week, got things back to normal and started back up again gradually. One pill for a few days, then 2 and I found my magic number was 4 pills a day. If I take 5 the bloating and gas make me miserable, but with 4 I have almost none of that and diahhrea about once per week. Not bad at all. Scans at 8 weeks out showed 30% shrinkage in my liver mets. More scans tomorrow so we'll see if it's all holding together.

But anyway, the message is get creative. Quality of life is IMPORTANT so keep pressing for what works for you.