HER2 Support Group Forums - View Single Post

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.

10-15-2008, 01:09 PM	#3
doh2pa Deceased Join Date: Oct 2005 Location: Chadds Ford, Pa Posts: 206	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. __________________ Donna Diagnosed 2/04 - Invasive ductal - no clean margins node negative - er+pr+, her2++ Mastectomy 4/04 - 4 rounds AC 9/05 - mets to liver treated with carbo/ixabipelone/herceptin 3/06 - complete remission 9/06 - new liver mets, starting Taxotere/Herceptin 1/07 -Liver mets stable, staying on Herceptin 5/07 - Liver, lung progression - starting T/X 12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin 4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin 7/08 - Liver Progression - started Gemzar, Avastin and Tykerb 10/08 - Liver progression - starting Doxil