Any advice as whether to try this for my brain mets or are side effects not worth it?
Have been dx with this for last 4 months after initial dx 7 years ago. Been living ok with lung and bone mets up until now but now feel much worse and quality of life is poor and feel am waiting to die. Can’t drive ans struggle with too much walking so am pretty confined to house.
Are the side effects terrible or should I risk It?
Hi Rosdubh
I’m so sorry to hear about your brain met dx, and hope that your oncs are considering options for you, e.g. whole brain radiation (WBR)? Gamma knife (very targetted radiotherapy)??
I’ve been taking Xeloda for six years – it’s done well in controlling my liver mets and helping to stablise my bone mets. I have heard that it might be effective for brain mets, but haven’t had any experience in that area.
For many of us, Xeloda is a much “gentler” chemotherapy option than many IV treatments (taxanes, FEC, etc), but the side effects seem to relate to the dose – the higher the dose, the stronger the side effects: digestive upsets, hand/foot syndrome, fatigue. But some of us are on pretty high doses without suffering too much from these side effects – impossible to tell how you might respond to it until you try it.
I hope that, if you do try Xeloda, it treats you gently and give you good results – I will be thinking of you.
Marilyn x
I have been taking Capecitabine for brain and liver mets for 7 months. I have also been taking Lapatinib. Initially the brain mets started to respond ( and liver too) however recently the brain mets are increasing. I’m probably glad I gave Capecitabine a go but feel my dose may be too low to be effective even though my liver is still responding. i am currently having WBR previously had Gamma Knife twice. I have decided to try a hugher dose of Capecitabine with Herceptin in January and hope this might help with the brain mets. Not sure which other chemotherapy gets into the brain. I previously had Cisplatin and 5fu which helped for a while. It’s so hard to make these decisions maybe give it a go and see how you deal withn side effects. Best wishes, Gemini.
My mum has been taking Capecitabine/Xeloda since July for brain and lung mets. We were told at the time that it was thought to be the only chemo drug which gets through the brain barrier, however we discovered today that her lung mets has got worse and before Christmas her 3 brain tumors had increased to 40! Unfortunately it would seem her cancer is much to aggressive for capecitabine. I think it is much milder than some of the others and hers was in tablet form. She didn’t really suffer too many side effects. She got sore feet but we managed to keep it minimal with regular cream and it was never a real problem. I think anything is worth a shot. Everyone is different and you may find you are lucky and suffer minimal side effects.
Mum is now back on IV Vinorelbine and 5FU. Our consultant told us that Vinorelbine is now also being considered for brain mets as it’s thought to get through the barrier in some cases. Mum has also had WBR and gamma knife. WBR was very successful for a while and we are still waiting to see the results of the gamma knife.
Good luck and hope whatever you decide works for you.