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Xeloda / Capecitabine - Your Top Tips, please?

Member

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

Thanks Tatyana, happy belated birthday sounds like you had a lovely day. Hope you have a good weekend too and that the weather stays nice.

Member

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

Hi Nicky, thanks for the encouraging words about gemcarbo! I don't have a start date yet but probably the week after next. So I'm enjoying an extra"week off"! I hope you get on ok with the eribulin and enjoy your holiday!
It was my birthday yesterday, we went to the theatre to see Midsummer night's dream, it was hilarious. The sun came out for the evening even though it had been a gloomy damp day. Tonight we're going out for dinner with our bestest friends who have been SO supportive.
Enjoy the holiday weekend everyone!
Member

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

Thanks all, Hopefully I will get on okay with Eribulin and have few side effects.  Tatyana, I was on gemcarbo before cape and found it okay, I had gemcarbo day 1 then a top up of gem on day 8, I think I had a little nausea and that was it. When do you start? I should start cycle 1 next week.Good luck. I also have lymphodema in my arm and will have it wrapped everyday except weekends for two weeks to hopefully move some of the fluid, I will also get a sleeve. I am going on hols soon so will also ask about antibiotics, not the best time to be changing chemo! Hi withasmile, are you still on Eribulin? Thanks everyone for the advise. I'm not sure why it took me so long to join a thread. Nicky
Member

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

Tobyjoe, thanks for the kind wishes. There's a lot of hope to be found on this forum, as well as support and hugs for the times when hope is hard to find. It makes such a difference!
Member

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

Hi tatyana

 

Sorry to hear your news.  Hope everything goes ok with the new treatment and thank you for your advice, it has given me hope xx

 

Tobyjoe 

Member

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

hi Nicky,

 

I transferred from Cape to Eribulin and it was heaven- the SEs so mimimal in comparison, and Cape was easier than my previous chemo too except I  suffered dreadfully with my hands and feet.

 

Good luck

x

Community Champion

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

Lindyloo,

 

iam on prophylactic pen vfor my lymphoedema...does seem to help keep the cellulitis in check..though I don’t want to tempt fate....prof mortimer recommends this if you have more than 1 bout of cellulitis a year, I also have antibiotics ‘in case’. And I have to say that one worry I have is that I lose a nail on that hand...as obviously I’d get cellulitis....butam travelling hopefully on Paclitaxel l

 

best wishes

 

Moijanxx

Member

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

Nicky, let us know how it goes with eribulin. I'll be on gemcarbo. Goodbye to cape, and good luck to us both!
Member

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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
Member

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!
Member

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.
Member

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!
Community Champion

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

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

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 🤗
Member

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

Hi tobyjoe. I've worked through both cycles. Had to have 2 days off last week but that was more due to the massive blister on my foot. In fact, next Monday I start a new job as a complaints officer at my local hospital. A lot easier for me with all my appointments! I asked my onc about taking the job knowing I was starting chemo and her answer was to just do it. Her view is that she is there to treat my cancer with the least amount of inconvenience to my life. She told me I can travel if I want to and pretty much do everything someone of 42 would do.

I have my down days but mainly I look at things like this. Any person can die at any time. Having cancer doesn't change that. It's a big thing to deal with and scary but I could sit at home and cry or I can live. I'll choose living. So if you love your job, go back to work. If you hate it, leave. If you want to go on holiday, do it. Life is short whether you have cancer or not. Make the most of the good days and when you have bad day let it happen and then move on.

Sending positive thoughts to you

Littlelizzie x
Member

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

Tobyjoe, the immune system can be a worry, but maybe you can wait and see how your bloods are looking after the first couple of cycles. Cape is much less harsh on the blood than other chemos, but it varies from one person to the next. My neutrophils have hardly gone down at all since I started on cape, so although I try to be sensible about avoiding infections, I feel fairly relaxed about travelling.

My onc is happy for me to go wherever I like, as long as I know where the nearest hospital is with an a&E department, just in case of any scares!
Member

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

Hi littlelizzie, can I ask how soon you returned to work after starting Cape? I work in a primary school office and was wondering whether I’d be able to return.  You all sound so positive about life, I hope joining this group a bit of that positivity will rub off on me x

Member

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

Hi Tatyana, thanks for your reply.  My hands are starting to itch so I’ll make sure I put the moisturiser on. 

 

My daughter has just moved to Kos and we had booked to go in August. My oncologist advised me not to go because of the side effects but after reading your planned trip I’m beginning to wonder whether I should re- book.  Don’t you worry about low immune system? That’s my main concern and the reason I don’t know whether to return to work.

 

Have a good holiday, I’m so jealous x

Member

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

Hi Cape Ladies on this not so lovely afternoon. Hand and foot problems have hit with a vengance! Had to have two days off work this week as I can't walk. Also have a blister on the sole of my foot which is about the size of a 2 pence piece. That may well be all the walking I did in Brighton last Saturday. Will be asking my oncologist for a reduction on Friday when I see her about cycle 3. Still determined to try another AI further on down the line.

 

Tobyjoe, the side effects of Cape are not as bad as IV. I'm 42 and still working full time. I've had the hand and foot problem this cycle but as others have said, this can be remedied by a reduction in the dose.

 

Tatyana, have a wonderful time in Greece Smiley Happy

 

Hope everyone is having a good weekend. What a change from last week!

 

Littlelizzie x

Member

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

Hi Tobyjoe, sorry you've had to join us but welcome to the gang! I'm on cycle 5 of cape and I'm still finding the side effects very tolerable, not at all like my previous IV chemo. I did start getting slightly sore dry hands on cycle 2,but this was fixed by using massive amounts of moisturizer and avoiding hot water. Hands are fine now.
Other than that, I have found that the fatigue increases a bit as you go on, so pace yourself and rest before you need to.

I'm just on my way home from a weekend in London, and off to Greece for a week on Monday. Not bad, eh?

So although you can't rule out the odd bit of tummy trouble or whatever, if you are ok in your first cycle there is really no reason to imagine it will necessarily get worse. When you get used to swallowing all the horse pills, you'll be able to relax and enjoy life!
Member

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

Hi all, I’m new to this. I’ve just started Cape this week. So far the side effects have been nothing compared to other treatments I’ve had. Is this normal? Will it get worse the more I take? I expected side effects to be similar to the other IV chemo I’ve had.

 

Thank you.

Tobyjoe x

Member

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

Don't worry Mulligans, it's quite common to have a reduction after one or two rounds. It doesn't mean it's not going to work, but it does mean you'll have a much better quality of life! Those sore feet can be a nightmare.
Have a good weekend everyone. We're going to the ballet tomorrow, what a treat! First time in ages.
Member

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

Feet and hands definitely starting to feel better. A relief to be able to walk without hobbling about! I feel bad getting a reduction as I have had very few side effects on other treatments. I hope new dose will be effective on my mets. Its scary to get a reduction so early on!
Member

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

Hi Mulligans
That’s good news, I also had to have my dose reduced because of hand and foot issues after 9 rounds and it’s made a great difference. They got better pretty quickly. Hope they recover fast in your break
Jane🐝
Member

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

Hi Mulligans, hope the extra time off the drug does the trick and lets your poor feet recover. The dose reduction should make life much easier. Meanwhile just relax and enjoy not having to take all those blinking horse pills for a while!
Member

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

Just an update, been given an extra week off to recover. Onc is worried if we continue my feet may split and I'll need more time off to recover. Reducing dose by 1/5. 4300 is clearly way too much. Hopefully feet and hands will recover over next 10days
Member

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

Hi Mulligans

Sorry, only just seen your PM. I have replied. Good luck with your onc appointment this eve.

George 🤗
Member

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

Thanks for replies. I'm seeing my oncologist this evening so will report back. Thanks for the advice. Great you had a nice break George. I really want to be able to travel as much as I can too so hopefully i van get the sude effects under control.
Member

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

Hi Mulligans, I was on Cape for 2 1/2 years and my hospital, the Royal Marsden had a regime of one week on/ one off. They said that in their experience it worked just as well and the SEs were much more doable. Might be worth a mention to your team? I was on 3600 per day. Wishing you luck with it x

Member

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

Hi Mulligans

In response to your question, I was on the full dose for 6 cycles, but that was me being stubborn and not believing that a lower dose would be effective.i really suffered with the big D during my week off; it was awful and dose reduction was such a relief. Second time around I had another dose reduction as neutrophils were struggling to recover between cycles so I am now on 1,500 x2. The Cape has been effective for me and it has attacked my liver mets, getting rid of one and reducing another. I do get sore feet, but slap on Flexitol.
Just back from a long weekend in Germany. Trying to get as many mini breaks in as I can while things are still stable and while we still have the EHIC card. Hoping to have a longer holiday in the summer😎
Hope everyone had a lovely bank holiday. Glorious day here again; the sunshine is such a tonic😊
Have a good week all

George 🤗