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Re: Xeloda / Capecitabine - Your Top Tips, please?

Evening Tatyana

I have lypmphoedema in one arm since 2010 never been prescribed anti biotics just in case. The thing I got from lymphedema clinic was a arm sleeve. I don't tend to wear it much apart from when I travel on an aeroplane . When I was at work at use to wear it all the time. Very uncomfortable though..

George enjoy Madrid next week. Your oncologist seems really good. In the beginning did you ask to be prescribed anti biotics just in case? When I go to see my oncologist on 11 June I am going to ask for some anti biotics. It must be reassuring for you if anything did happen abroad you already have tablets with you rather than having to find a doctor or hospital .

Enjoy holiday.

Linda
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Lyndy, after my first cancer in 2002 I developed mild lymphoedema in the arm. Because of this, I was prescribed just-in-case antibiotics, in case of cellulitis, and I've always carried them when travelling ever since. (I get new ones every couple of years when they expire!) I've never had to use them, but it's reassuring, in case it takes a while to get to a doctor! (I hope I haven't tempted fate, too!)
George, enjoy Madrid! It's on my list...!
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Posts: 332
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Glad you had a good time in Greece and hope you get your holidays Lindy and Tobyjoe. I am off to Madrid on Sunday until Wednesday. Week off this week and onc has given me a few extra days as feet getting sore at the moment.
Antibiotics are a precautionary measure, Lyndy. I have never had to use them ( Hope i haven't tempted fate. Yikes). Weather here has also been a real tonic. It has been so nice to wake up every morning to sunshine and blue skies 😎
Enjoy the rest of the week

George 🤗
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Evening Tayanna

Pleased u had a good holiday in Greece. Just wondering did your oncologist prescribe anti biotics like George mentioned?

I normally go abroad twice a year not been since starting Cap in October. You have given me reassurance I will be hopefully OK to travel.

Linda
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Tobyjoe, I'm just back from a week in Greece with lots of sea swimming. It did me no end of good. I hope cape and your onc are kind to you and you manage to get away soon! Needless to say I was extra careful with hygiene, sunscreen etc, and I was absolutely fine.
Member
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Registered: ‎12-05-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone, thank you for your advice.  Just finished my first cycle so have now got a week off tablets.  I’m seriously thinking about going to see my daughter and returning to work, going to wait and see what bloods are like next week.  My oncologist wasn’t too keen with me going to Greece last year so hope he will be ok this year.

 

Tobyjoe xx

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Re: Xeloda / Capecitabine - Your Top Tips, please?

[ Edited ]

Hi Toby joe, I was on capefor21/12 and wish I’d been more adventurous...wanted to go back to Oz, which would have been quite possible...other than I was studying art at uni and also my partner didn’t want to go...,so kept putting it off...now I’m on hv chemo most of the time and that has limited my options.,,,you sort your insurance, go and travel——beiing really careful tho....but GO🤗🤗🤗🤗.

 

love Moijanx

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Posts: 218
Registered: ‎10-08-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky I had Cape for triple neg bc lymphoma in 2016 prior to Eribulin and it def cleared the tumours (para aortic and liver) but I became really ill on it so changed to Erib
Community Champion
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Re: Xeloda / Capecitabine - Your Top Tips, please?

[ Edited ]

HiNicky, my onc said they used to use vit b6 for pn, but found that it worsens it.....sorry.xx

 

https://cancer.uvahealth.com/images-and-docs/neuropathy.pdf

Member
Posts: 6
Registered: ‎13-05-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks all for such a warm welcome. Hi Tatyana, I was diagnosed in March 2016 and also had fec-t with partial responce. Followed by a lumpectomy in Sept then lymph nodes removed in Nov. Radiotherapy in Jan 17 and a mastectomy in May, then Gemcarbo in Aug. I am also in the same situations as to whether or not the cape is working but I'm not sure what they will put me on next as I have already been on gemcarbo. I also have lymph nodes that are affected and inoperable. Good luck for your scan results next week. Mine is now confirmed for the 21st. Hi Mulligans, with regards to the SEs I'm not doing too bad. I have sore hands and feet which come and go, I have vitamin B6 for this and am also using lots of hand cream. I have felt sick a couple of times but this has passed. 

Highlighted
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks all for such a warm welcome. Hi Tatyana, I was diagnosed in March 2016 and also had fec-t with partial responce. Followed by a lumpectomy in Sept then lymph nodes removed in Nov. Radiotherapy in Jan 17 and a mastectomy in May, then Gemcarbo in Aug. I am also in the same situations as to whether or not the cape is working but I'm not sure what they will put me on next as I have already been on gemcarbo. I also have lymph nodes that are affected and inoperable. Good luck for your scan results next week. Mine is now confirmed for the 21st. Hi Mulligans, with regards to the SEs I'm not doing too bad. I have sore hands and feet which come and go, I have vitamin B6 for this and am also using lots of hand cream. I have felt sick a couple of times but this has passed. 
Member
Posts: 505
Registered: ‎01-05-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Well done George for raising all that money.

Your oncologist seems really good making sure you are fit enough to travel. I have still not booked any holidays yet

I will ask when I am back to oncologist on 11 June if it is OK for me to travel. I don't intend to go far probably Europe. Just in case anything happens.

I had eyebrows micro bladed last Thursday everything fine upto now. Go back in 6 weeks for touch up if needed. Great getting up every morning seeing them as opposed to a blank canvas. Always had good eyebrows before all the treatments.

Linda
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Posts: 332
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Tatyana, hope you are enjoying your holiday. Well done, you for going. I am sure you are having a fantastic time. Holidays should be prescribed on the NHS ( I wish)
Mulligans, glad to hear you have had a dose reduction. I am sure SEs will be much easier to deal with now. I see onc next week for cycle 13 ( yikes)
Have a good week all

George 🤗
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Wow George thats a great achievement! Tatyana great to hear you are goimg on holidays. Sounds fab. Tatyana and Nicky170 good luck with those scans. My first one is at the end of the month.

So i ended up getting an extra week off meds for my feet to recover from my 2150 twice daily dose. Feet and hands feel back to normal. Lots of peeling on my hamds even though i had tonnes of moisturiser on them. I'm being reduced to 1950 twice daily. Im hoping this helps with side effects. How are your side effects nicky170? I know you are worried but this drug has been very effective for lots of people. Lets hope we all fall into this category. Lizzie hope you side effects have eased up. An extra week off really helped me.
Nicky08 very positive to hear you have been dealing with it this for 10years.
Tobyjoe my side effects hit on cycle two. Keep feet and hands as well piled as you can. I have ordered doublebase gel from gp so hopefully this will help
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nicky 170, hi, I'm pleased to meet you, you're my cape twin! I also started in early February, nearing the end of cycle 5, on 1800 twice a day. And yes, I'm triple negative. I was diagnosed in May 2017, had fec-t, partial response, followed by a mastectomy in November. All seemed well but a scan in January showed affected mediastinal lymph nodes, inoperable, so now I'm on cape.

I'm doing pretty well as regards SEs. As for whether the cape is working, that's another question! I had a scan after 3 cycles which was inconclusive. Had another scan a couple of days ago, results next week, so keep your fingers crossed! If the cape isn't working, I'll be switching to a different chemo, probably gemcarbo, which will be a lot less convenient than cape!

Hope you are doing ok, let us know when you have your scan, we'll send you lots of positive vibes!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Lizzie, your lovely enthusiastic heartwarming post has brightened my day. You put it so well. We're all in a place we never chose to be, but as we're here, let's make the most of it. For ourselves, and also to give our loved ones some good memories.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

George, congratulations on doing the Race for Life, that's a fabulous achievement. And well done for raising all that money. You're a star! Also I love your positive attitude about travel. You certainly helped me to pluck up courage, and the result is I'm writing this in Greece! Yay!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi tobeyjoe 

I completely back up what George and littlelizzie have said about living with SBC. I have been living with it for over 10 years now and during that time have travelled many times both in Europe and further afield. The main thing is to get travel insurance and there is a very good thread that lots of us have added to. It is more difficult and expensive to get insurance for secondaries but it can be done. Have a look at it. Having said that when my daughter was living in Paris for 3 years I didn’t take insurance out for every trip as it would have been too costly (at the time very few if any companies were offering annual policies for SBC) so I used to travel with my EHIC card and a general travel insurance policy which came with my bank account which covered all the other aspects such as travel delays etc but not my SBC.  I also continued to work after my diagnosis for several years because I enjoyed working with the people at the company I was at (I didn’t love the job as much but the people made it worth it!) but then gave up work when the company changed hands. I did get another job which I really enjoyed but the very nature of it, visiting different hospitals and a change in treatment, meant I had to give it up. I have made the most of my time now I don’t work and get out and enjoy doing things I want to do. Having SBC certainly stops you ‘sweating the small stuff’!

Nicky x

 

Member
Posts: 6
Registered: ‎13-05-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello,

 

I am new to this and was just wondering if anyone has an experience of capecitabine with triple neg bc?

I have been taking it now since the beginning of Feb, I am on cycle 5 and take 1950mg twice a day.

Not sure yet if it is working waiting for a CT scan date w/c 21st.

 

Thanks,

 

Nicky

Member
Posts: 332
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks for your positive post Lizzie. I agree entirely and have a plaque in my kitchen which reads: "the brave do not live forever, but the cautious do not live at all." It keeps me motivated.
I have been on quite a few holidays this year, mainly mini breaks and have been fine. I have a blood test before I go to check everything is ok and my onc gives me antibiotics to take with me. I also take my 'just in case' medicine bag which contains most things I might need. Last weekend we were in Nuremberg and in two weeks time I will be in Madrid. I don't wish to sound cavalier, and I am careful, but while things are stable at the moment I really want to enjoy life before I am hit by another cancer tsunami.
Another good news story is I did Race for Life today in my home town and managed to run/jog it for the first time ever. I have been following the NHS couch 2 5k programme ( supposed to take 9 weeks but I adapted it and it took me 14 weeks😂). I have raised £600.00 for Cancer Research and am feeling so proud of myself today. 😊 The sun is shining too. Perfect.
We live with uncertainty/ doubt a lot of the time so I think it is so important to enjoy the good times. (Hope I am not sounding like I am preaching and, having lived with this disease for over 3 years, I know what the 'dark' times feel like)

Have a good week all and hope SEs are not too painful.

George 🤗