Member
Posts: 302
Registered: ‎28-01-2016

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

Sorry to hear that, Nicky but best to move on if treatment is unsuitable. I have heard good things about Eribulin and know there is a thread on here.
Good luck with your new treatment

George x
Member
Posts: 6
Registered: ‎13-05-2018

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

Hi all,

Thanks for all the advise. Unfortunately, cape has only worked on some of my enlarged lymph nodes and not the ones that have recently appeared near my lungs. I am no longer on cape and will start Eribulin next week. No more hand and foot syndrome 😊, hopefully the new SE's will be managable.

I wish you all the best with your ongoing treatment.

Nicky

Member
Posts: 302
Registered: ‎28-01-2016

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

Hi Lyndy

I think my oncologist suggested the antibiotics just in case. I am sure your onc will oblige 😊We all need a little holiday now and again😎
Member
Posts: 302
Registered: ‎28-01-2016

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

Hi Tatyana, sorry to hear Cape us not working for you. At least you had a lovely holiday before the news. We will miss your positive outlook so please do keep us posted. I am sure your next treatment will be the one for you.

George x 🤗
Member
Posts: 450
Registered: ‎01-05-2012

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

Afternoon Tatyana

So sorry to hear cap has not worked for you. Pleased you were able enjoy holiday in Greece before receiving the horrible news.

Good luck with your new chemo.

Linda
Member
Posts: 724
Registered: ‎30-05-2017

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

Hello friends,
Sad to say I won't be around here much from now on, as cape isn't working for me. Scan results showed some disease progression, with nodules in left (previously unaffected) breast and some little ones in lungs. So I'm switching to IV gemcarbo. Wish me luck!
It's quite annoying as I've been feeling pretty good on cape and have been able to travel etc. But if it's not working, there's not much point! Good luck to all you guys, and I'm sure I'll keep popping in to see how everyone is doing! Love and hugs.
Member
Posts: 450
Registered: ‎01-05-2012

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
Member
Posts: 724
Registered: ‎30-05-2017

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...!
Member
Posts: 302
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 🤗
Member
Posts: 450
Registered: ‎01-05-2012

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
Member
Posts: 724
Registered: ‎30-05-2017

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
Posts: 5
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

Community Champion
Posts: 3,286
Registered: ‎04-02-2016

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

Member
Posts: 204
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
Posts: 3,286
Registered: ‎04-02-2016

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
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. 
Member
Posts: 450
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
Member
Posts: 302
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 🤗
Member
Posts: 44
Registered: ‎01-05-2012

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