end of Xeloda: what next? Let me know

Hi,
I have been on Herceptin+xeloda for almost 7 months. The results were excellent. I have been NED for almost 3 months.
Now news mets (4 small ones) have appeared in my liver, plus 4 in my brain. Those in the brain will be treated with GAmma Knife. But my onc said I will have to start a new chemo, together with Herceptin. It can't be Xeloda anymore. Can you tell me what they could give me, what are your experiences. I loved Xeloda, I could lead a very good life. Please help me. After being NED is so bad to go 'back'. Help me. Thanks

[Patty H]

I just finished xeolda and my next chemo I think is going to be abraxane. I have already tried navelbine, gemzar and taxotere with carboplatin. So it will depend on what others you have tried. I found for me that navelbine gave me great quailty of life with little to no side effects. But others have found some of the others I mentioned easier. Patty H

Thank you. Me too, I have tried navelbine and cisplatin, before Xeloda. Navelbine and Xeloda gave me no side effects. Now I am afraid of taxotere, I have heard it can give side effects... What do you know about abraxane? I will investigate this. Thanks again and a big hug. Beatrice

[Patty H]

I had the taxotere on a weekly basic so I didn't loose my hair that time. I am on a break for a few weeks now. The abraxane was just approved this year. I think it will cost me my hair this time. It is actually taxol in a diiferent solution so you don't have to take steroids with it. My Dr. said he would try to save my hair by giving it to me weekly instead of every three weeks. But Hope on this site is already on it that way and she said she lost her hair. But she is having great results with it. The good thing about it is I have been on constant chemo for 2 1/2 years. The Dr. said if this one works I maight get 4 to 6 months off chemo. I am a little nervous about starting this one. Let us know what your Dr. decides to try this time. Patty H

Hi Beatrice, you say you have been off Xeloda for 3 months, did it occur to your onc that you may be one of those who have to remain on Xeloda forever, it flared up again once you had stopped it. I am also in a lull at the moment after coming off Xeloda, what dose were you on? I am considering starting up again as a maintenance drug. I have been on and off chemo and radiation since 1998 and never remain NED for very long. I had Taxol weekly and I lost my hair, I had it for 26 weeks with carboplatin then it came up again when I went off it and that was when I started the Xeloda, I had been on Xeloda before for skin mets but it had been quite some time ago so I had the Xeloda before I had my biopsy, in the past as soon as a biopsy is done the lumps got bigger, not so after taking for a week before, I have just got my hair to a length where it had a trim and I didn't look like a male, so I don't want to loose it for a 4th time. If I need to start again I am opting for Gemzar/methotrexate/carboplatin, not sure if it is FDA approved but that hasn't stopped me in the past.

Hugs Lyn

Beatrice,
I also wonder why you can't go back to Xeloda because my understanding is that you had a flare-up why you went OFF the xeloda and not when you were ON it

Take care,
Al

I went off Xeloda as apparently after a while it becomes toxic, causing a so called DPD deficiency. I was on it from October through the end of April (7 months). 3000 mg a day. No major side effecs apart from hands/feet. Do you know if anyone has taken it for longer. It would be great if I could take it again. I had a great quality of life.
Let me know. Thank you. Beatrice

Hi Beatrice- They just took me off xeloda this week after only one and a half rounds because I got red blotches all over my hands and arms. Also diahreah and last week a nosebleed. I was on 4000 mgs daily- 2 wks on, one week off. I think he may reduce the dosage this week.I think the long term plan for me was to give me taxotere next. God Bless- Cathy