Capecitabine

[Life123]

How have you decided? I'm in similar shoes, and I was curious if the allowed me to be have scans if I turned down chemo and hormone treatment? 

[Clairew]

Hi Lesley,

Thats good news, it’s so hard not to panic.  I don’t think people realise if they aren’t going through it like all of us.  I do relax a bit more when I don’t have a scan booked for a while but as soon as it’s nearly Scan time and waiting for results I go into the scanxiety mode.

glad you aren’t having too many side effects too, fingers crossed it stays like that. It’s a lot of tablets to take , I’m on 2300mg am and pm, just knock them back as quick as I can 😂. 

My oncologist calls me every 3 weeks now, on my week off after bloods, which incidentally I don’t yet have my next bloods appointment yet 🤔, I must chase this up.  

Are you on anything else with the capecitabine? I am on denusomab and zoladex.

take care

Claire x

[Lesley123]

Hi Clare’s.  Went to see the Oncologist today face to face I was so nervous about what she was going to say about the C T scan but I was so pleased she said one Tumour had grown in lower back a she said it is very tiny and all is stable at the moment god I was so relieved. I am on my second cycle of Capecitabine , have only had Fatigue hand’s and feet are ok, Oncologist is ringing me in six weeks to see how I am getting along on the tablet’s so all good at the moment, I have heard good reports about this drug so hopefully it will work.Good luck hope you are coping ok.x

[Clairew]

Hi Lesley123

Glad you haven’t had too many side effects. I’m on my 2nd cycle, my dr said scan after 3/4 cycles. They are all so different. It’s easy to say don’t worry as I get scanxiety every single time. Fingers crossed all is well for you.

Let me know how you get along.

claire xx

[Lesley123]

Hi all on Capecitabine. I am on my second cycle of this drug, had a Scan on Friday and Oncologist wants face to face on Wednesday just wondering why she want’to see me so soon I am worrying now that there is something on the scan that’s worrying her, have not had any side effects really just Fatigue and two sickness episodes when I felt sick but no vomiting, I do suffer from scanziety and am terrified she is going to tell me I am going to die.xx

[Clairew]

Hi Mounties,  I have just started capecitabine, I am currently on my week off. I too had an area in liver so they moved me from palbociclib/ fulvestrant to capecitabine.  So far so good, I am moisturising my feet and hands twice a day in case of the hand/foot issues. I also had a bit of acid reflux, solved now with omeprazole (taken 2 hours before). It is a struggle all this we have to go through but there are lots of different regimes and I have read up and seen on forums this is a well tolerated drug and is also good for liver etc.

and like Lesley says drink plenty of water, I do have to make myself as it’s all too easy for me to have another cup of tea ☕️. 

Take care , keep us updated of how you are getting along and likewise.

claire 🙂

[Lesley123]

Hi don’t think about how long you have got I am sure you will go on for year’s be positive and forgot if you go on Cape drink plenty of water.

[mounties]

Oh Lesley I am so relieved to read your reply.  I have been worrying night and day about going on these  tablets after reading all the possible side effects they can cause. When I had chemo 16 years ago I had a really tough time with lots of sickness and always said I would never go through it again. But now I don't have a lot of choice if I want to live longer then 12 months.

I hope we can stay in touch. Thank uou again , xxxx 

[Lesley123]

Hi Mounties.    I was exactly the same as you I was on Fulverstrant  but stopped working also had more Tumoursin my spine after having a MRI scan, I was terrified wondering if there was more treatment Oncologist has put me on a chemo Tablet Capecitabine been on it a week no side effects so far but early days, I am 77 so older than you, it’s your choice I chose the Chemo tablet option.  I have got a CT scan next Monday and a face to face with my Oncologist who has been absolutely great I do get Scaniety so not looking forward to the results . Capecitabine is supposed to be a good drug there are ladies on here who have been on it for quite a few years.Good luck let me know how you get on.

[mounties]

I recently saw my oncologist who told me my secondary breast cancer has now spread to my liver. I have been having Fulvestrant injections in my buttocks every 28 days which I found very painful but seemed to work at keeping the cancer in my bones. I felt I could carry on living for years and felt I had choices. Now I've been told I either start chemo tablets twice a day for the rest of my life, or I take nothing. 

If I take chemo my prognosis is 3 to 5 years, without chemo my prognosis is 12 months. How do I decide? I am desperate for advice. I'm not sleeping, I cry for no reason and I am terrified of leaving my wonderful husband and family.  I am 66 years old.

My oncologist will ring me on the 7th October to ask my decision. 

Please, please can someone help me know what ths drug is like