Hi everybody
I only see old posts about capecitabine.
I know there is many new medicines that are not chemo now…but unfortunately that it’s what I’m going to start.
Any experience? Somebody was succesful on it for long time?
I hope it will work for me…
And good luck to you, whatever you are on!
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This is the most recent post I can find , maybe try posting there . Best of luck with it.
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Thank you, I will look
Hi Amel, i have been on xeloda/ capacitamine for five cycles now, two weeks taking tabs and one week off…I have a scan yesterday, just waiting for results but no one has phone me in urgency! I had triple negative bc diagnosed in 2021, heavy chemo, mastectomy and radiotherapy, given the all clear from biopsies, then at six month scan bc in my lymph nodes both sides, this time hormone positive, started another drug ribociclib which worked on the hormone positive but found out the TNBC had come back in nodes, collar bone and possible pelvis. The xeloda has shrunk the lymph nodes and isn’t too bad to take, very tired at times, and sore feet but ok, I also have kept working a very physical job although on reduced hours… so far so good, I will update when I see the onc…. I haven’t asked about what happens next, not sure if I want to know, but I feel good most of the time. Keep positive and keep in touch.
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Thank you for your answer! I’m glad it is working on you, with fewer side effects. I also was on ribociclib for 14 months and worked really well for me, but just recently I had a relapse in my liver so I’m switching to capecitabina, hopefully is going to work! Good luck to you too, I will update on how is going to be fo me
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I found it far easier than ribocyclib, and it is working I am sure. Keep strong and keep in touch.
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Hi Amel, I’ve just recently started Capecitabine for the first time so far so good (touch wood) unlike Babiecat l haven’t been on it long enough to share my experiences but l will keep updates. I’m due to start RT next week 15 sessions (little nervous). I will be off Capecitabine while im having RT and then restart once my sessions have finished (another treatment under the belt!). Hope all goes well for you do you know how many cycles you will be having? Xx
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Hi. I was on Capecitabine for 16 months until it stopped working in January 2023. (I am on eribulin now and that is working too). I found cape quite manageable - I was a bit fatigued at times and had to pace myself but generally it was okay. I had a couple of breaks so that I could take some long haul holidays. Kept my hair which is always a little bonus! Hope it works for you. Good luck!
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I’ve to use it as long as it going to work…opefully is going to be long time!
Good luck to you too! @RP002
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It’s reassuring that if it stops working there is something else…my fear is that they will just say, it hasn’t worked… and there is nothing else… that’s on my mind a lot, I need to ask the oncologist what happens next but honestly to afraid to.
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@Babiecat Me too I didn’t ask exactly what’s next, but I know there are many different therapies now, and many new ones are coming up too. I saw people that went through more than 20 lines of therapies. So let hope Xeloda is going to last long time, and in the mean while they find something that work even better! That’s my hope!
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Hi @Amel I am on capecitabine post treatment for primary triple negative BC as an insurance policy. I am having eight cycles (two weeks on one week off). I am on 5000mg daily split into two doses. I have been okay apart from the sore feet and profound fatigue. I had two weeks off after round 4 when my feet blistered badly but they have been okay since. I am now on round 7 and coping. I am not expecting any routine scans just the annual mammogram to check for breast recurrence. This seems to be a common treatment for TNBC when you haven’t had a complete response to chemo first time round.
Best wishes to you
Nancy
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Hi @Nancy.B your treatment sounds similar to mine, I am also on Capecitabine post treatment for primary triple negative BC. I will be having 6 cycles of Capecitabine - 2 weeks on, 1 week off, 2 weeks on etc. However during RT l will be having a break from it then back on the cycle once RT has finished. I have only completed one cycle, currently having RT. I haven’t experienced much side affect other than my skin feeling really dry and sore, l do have sensitive skin. You have done really well - on your 7th cycle, hope your feet are feeling much better now. Unfortunately l did not response well to chemo the first time round based on my pathology results. I’m not even sure how effective Capecitabine will be or what the odds are, like you say this could be a common treatment for TNBC. When you have completed all your cycles on Capecitabine will that be the end of your treatment? Take care, hope your feeling better xx 
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Thank you for your answer, best wishes to you too!
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@RP002 I will have a month or two off everything to recover from the chemo but at some point I need to resume Exemestane for cancer no 1 which was triple positive. I am due my annual mammogram soon as I am 3 years post cancer no 1 and one year post cancer no 2. Then I need to get my hip replaced for arthritis and have a small scar revision from my total axillary clearance which got mucked up. At that point I intend to step away from hospitals and obsessing about my health and get on with my life! It’s been 3 and a half years of slog and I’m tired of it all.,
How are you coping with Caoecitabine? I hope it is treating you kindly
Nancy
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Well, just had my scan results and they are good, the cancer has gone from one armpit lymph nodes and the other side the cancer is smaller, other nodules on my shoulder bones and pelvis have gone too! Although my destroyed thyroid is apparently swollen……Worth feeling pants! Feet and hand very sore, reduced dose to 2000 twice a day and prescription for different cream… was told I will be on xeloda for as long as it works and also that if it stops there are different things, the consultant has a lady who has been on it for four yeas with no real problems and good effect! So nice for a change to have soit I’ve news, hope all you other ladies are doing ok too. Xx
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@Babiecat
Wow that’s amazing, I very happy!
It also good to know that somebody was on it for 4 year and was ok!
I still have zero side effects…hopefully work anyways…I feel like I’m on anything, which kind of meke me fell a little concerned…anyways in couple days I have a blood test and will talk with my oncologist.
But thank you for your story, it give me hope! Good luck again!
@Babiecat
I forgot to ask…after how long did you have side effects? I’m only at my fist cicle, I’m at my first week off after my first 2 week on…
I didn’t have any side effects for about three cycles, I was saying oh it’s a breeze……then feet blisters , I usually feel worse on my weeks off…fatigue and sore feet but nothing else major, I have a nice new foot cream to try out, my feet have gone a bit browny yellow so look directly all the time but apareny That’s normal! Hahaha every day a new surprise!
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