Starting Xeloda and would appreciate any insight and shared experiences / success stories please :-)

Traleee

This is my first post to the on-line Network although I frequently read the wonderful and raw posts you all share that unite us and provide strength and inspiration!  I was diagnosed 3 years ago with liver mets and had my ovaries removed and started femara.....which has been successful up until now.  Liver mets now count 20 with 19 only 1cm and unsure whether they are all active but one at 5.5cm which is active hence my oncologist has opted to start me on Xeloda and that treatment began today.  I am taking 5 x 500mg daily .....two weeks on and one week off.  I visit him in 3 weeks for review of how I am responding.  He is confident I will do well. I feel blessed and like I am living the dream given that I am 3.3 years down the track albeit I am using lots of energy at the moment to stay optimistic and positive given I was hoping for a liver dissection last week which the surgeon declined to do upon discovery of multiple lesions including new ones post my original diagnosis.  I have a 22yo son (only child) who lives with me (still at Uni) and I am a single mum.  He is my everything.  I am not afraid for me....but I am scared for him.  I know this emotion will settle but would appreciate any feedback members may have as keen to give the Xeloda a very good run and hoping symptoms are manageable so as I can show him daily strength and continued capacity to be as well as possible.  Keen for anything anyone may be prepared to share re their own experience in terms of symptoms, management and success.  Thank you my cancer sisters.  Tracey (aka Traleee) xx

primek

I haven't had the experience but just wanted to welcome you to the site. There is a metastatic breast cancer group you can join which will probably have lots of posts about this medication. I will add the link for you to join. 

Also have you a hopes and hurdles kit?  I'll add the link also just in case you haven't. Kath x

primek

The group

http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

The resource kit

https://www.bcna.org.au/resource/kits/hope-hurdles/

primek

Oh...and this was a recent post you might find interesting. If you haven't found it already.

http://onlinenetwork.bcna.org.au/discussion/17553/xeloda-foot-care#latest

Merv

I'm sorry I'm not much use to you in responding to your questions or emotions, and like you I've never posted before, but your post gives me a lot of hope and encouragement and I hope that makes you feel a tiny bit better. I was diagnosed 9 months ago de novo metastatic. It's taking a lot to get my head around what that means for the future and how to plan and live my life. Hearing that you're 3 years down the track and show such strength and grace is an inspiration. I wish you all the best with the new drug and bugger all side effects! Your son should be very proud of you. kate (the bear's best friend)

Trekkie

Hi Tralee, I am new to Xeloda too. I am on my 4th cycle. I started taking 4 x 500 morning and night, but cut back to 3 x500 morning and night whilst I had radiation on my sacrum for bone mets. I am now on 3 x 500 morning and 4 x 500 night. My onc said it is accumulative so side effects may become more pronounced each new cycle. I do get diarrhea about the last 2 days. Through the rest of the two weeks it can depend on what I eat (cant help being naughty sometimes).  I have found that I get heartburn more regularly now but try to remember to take a tablet to help this before my meal.
My skin has been ok so far, no splitting on my hands or feet.  I find that my sleep is disrupted on the tablets and the further into the two weeks the more I get a foggy brain. I am tired a lot but still working full time. The tablets have started to work on bringing my markers down, slower than I would like though. I hope that you get your desired results. Stay positive and keep fighting.

Lisa1407

Hi Tralee, I am about to start my 6th cycle of Xeloda. I haven't found it easy. I am taking 3600mg of Xeloda for 14 days with a 7 day rest. Towards the end of the 14 days I feel shattered, but am still managing to work. The last 2 cycles I developed hand and foot syndrome. I don't get peeling and cracking, just red, swollen and really painful. Mostly feet to the point where it is hard to walk. My oncologist gave me an extra 3 day rest and this cycle I will drop to 3300mg a day. She is also happy to drop to 3000mg if I still have problems. I have diarrhoea most of the time and the lining of my mouth is inflamed. Have to keep going as not much left for me to try other than intravenous chemo!

Trick3

Lisa1407 said:

Hi Tralee, I am about to start my 6th cycle of Xeloda. I haven't found it easy. I am taking 3600mg of Xeloda for 14 days with a 7 day rest. Towards the end of the 14 days I feel shattered, but am still managing to work. The last 2 cycles I developed hand and foot syndrome. I don't get peeling and cracking, just red, swollen and really painful. Mostly feet to the point where it is hard to walk. My oncologist gave me an extra 3 day rest and this cycle I will drop to 3300mg a day. She is also happy to drop to 3000mg if I still have problems. I have diarrhoea most of the time and the lining of my mouth is inflamed. Have to keep going as not much left for me to try other than intravenous chemo!