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Xeloda / Capecitabine - Your Top Tips, please?

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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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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

 

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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

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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 🤗
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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
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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!
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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

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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

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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 🙂

 

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

 

Littlelizzie x

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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!
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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

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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.
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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!

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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🐝
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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!
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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

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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 🤗
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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.

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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

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

Hi Mulligans.

It's done on Body Surface Area and is 1250mg per m2 twice a day (rounded up or down to the nearest tablet. You BSA is 1.83 (good calculator at https://halls.md/body-surface-area/bsa.htm ) so your recommended dose is 2287.5 am and pm.

Normally dose reductions are due to SE and usually to 80%, see how you go and then if no better a lot of us seemed to end up at 1500mg which is where I ended up after starting at 2500 (eek).

Definitely tell your ONC or Nurse at next appt. Hand and feet issues can be serious and permanent so don't brush it off

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

Thanks lindyloo

Im 42 so probably why im on high dose of 4300 (5,6ft 11.5st) Second cycle has been agony on my feet. My original chemo Fec-t was easier. My feet are sore to walk on and cant twist key in my door! Feel well other than hands/feet. Just scrolled through older pages and wonder if people were lowered because of side effects or neutrophils. Am wondering how much of a reduction will make a difference.

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

Morning Mulligans

Just to answer your question regarding dose of Capecebine.

I started on 3800mg per day but it was reduced after 3 cycles as neutrifils went too low. I am now on 3000mg per day. I just finished cycle 8.

Like Tayanna mentioned how they work out dose is weight and height. I am 5ft 5 and 10st 7 and 65.

Don't know how old you are younger people tend to be put on high dose.

Hope that helps.

Linda

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

Hi ladies

Although I’m not on Cape now I was a couple of years ago. I can’t remember the actual dose but I had a dose reduction of 20% pretty quickly and stayed on the 80% dose for the rest of the time I was on Cape - about 18 months. It shrank my liver mets and kept my bone mets stable in all that time until it stopped being effective. My oncologist used to say they have to get the balance right between effectiveness and quality of life so most will reduce your dose if side effects are getting to you.

Nicky x

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

Hi Mulligans,
I'm on 3600 a day, now on cycle five and it's been the same dose all along. Had sore hands by end of cycle 2 but it's been ok with loads of moisturizer and avoiding hot water etc, so no dose reduction. Otherwise I've been ok except for fatigue which seems to increase over time.
Your dose does seem pretty high but it depends on height weight and age (I'm 5'7", 9 st 7 and 63!). A reduction after two or three cycles seems to be quite common.
It's a glorious sunny day here today, hope it's the same where you are. Yes we do need it!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi ladies,can you remind me what dose you are on? I'm on 4300 a day. Very very sore feet and hands. Also way too much bowel movement (sorry too much info!!). Just finished 2nd cycle but think we will have to reduce! Onc said its normal to reduce after cycle 2 when side effects kick in. What did you reduce to?

Greece sounds fabulous! Oh i need some sun!

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

Morning George

Enjoy your holiday to Greece. You seem to go on a lot of holidays which is lovely.

We have still not booked any yet. Really must get one sorted.

Tayanna

We all must on about same cycle of cap. I have finished cycle 8. Not back to see oncologist till June. Seems along way off.

Good luck with scan results.

Linda


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

He’s working on Zante in the quieter north end of the island. I’ve never been but he says it’s beautiful. Not going till early August so hoping I will stay ok till then ! Hope you have a wonderful time.
Jx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Janie, it's great that you can go and visit your son in Greece. We're also going to Greece for a sneaky week during the current cycle of cape, fingers crossed! Where in Greece is your son? Have a great time.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George
Thanks for the advice, I emailed his secretary and he said s happy to do that if bloods are okay !! So excited as it means I can go and see my son who is working in Greece. Glad your scan results were good. I have one coming up soon. I have been on Cape for 8 months too but this will be first scan after six months. I feel really well (I have fluid build up when it’s not) so fingers crossed although you can’t help worrying!

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

Hi Tatyana

Good luck for CT scan, just been there so know exactly how you are feeling. I planned lots of nice things the week before to keep myself distracted. Easier said than done, I know. At least the weather is picking up. Sunshine for the bank holiday weekend, must be a first😉

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

Hi all, just seen the oncologist, he's happy to give me another 3week cycle on cape,with a CT scan at the end. So, ok for now! I expect I'll have a bad case of scanxiety in three weeks from now, but for the time being it's a case of better the devil you know!
Have a good day everyone. It's raining cats and dogs here!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Great news George - and long may it continue.

Nicky x

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

Thanks, Lizzie. It is only now I realise how stressed I was about getting the results. My onc, as always, was very calm and pragmatic which is a good thing.
Have a good week

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

Thanks Lyndy, Mulligans and Tatyana for your good wishes. It was a relief as I had prepared myself for news that Cape had stopped working. On and off, it is nearly 2 years now since I started Cape: August 2016. Anyway, making the most of reprieve until the next scan.
Have a fantastic bank holiday weekend everyone. Looks like the sun will be back😎We are off to Germany for the weekend. I will certainly make the most of my week off Cape to enjoy a beer or two🍻

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

Woo hoo! Great news George!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I just checked in to see if you updated George. Great news, a relief I'm sure! Very happy for you.

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

George, that's brilliant! Dead chuffed for you. Enjoy your celebration!
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lyndy, during 2017 I had a liver resection and then was on Tamoxifen, but had progression so onc put me back on Cape. I stopped Cape 7 weeks before op. It has been a very effective chemo for me. Really hope it continues to work for a little longer. Stress las night was unbelievable. Feeling good now though😊
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi George

So pleased for you. Nice to hear the news when we are told we are stable.

Did not realise you had been on Capecebine in 2016 for 6 months. If you don't mind me asking what treatment were you put in 2017?

You definitely need a glass of wine to celebrate.

Linda

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

Hi all

Some Good news from me: all stable. 😊I have been on Cape for 8 months now, not including a six month stint in 2016, so I was relieved when I got the news. This is my week off too so double celebration. Phew. I can breathe now.

Hope all well with everyone else. Have a good week.

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

Lizzie, i had a plueral infusion too about 2 years ago. My ai arimidex was my first line of treatment for secondary and it appeared after 3 months. So my ai failed. Chemo cleared it right up thankfully and have had no issues with it in 18months or so once it has cleared and you have had proven success on an ai hopefully you can use one again.
Janieb im sure the doctor can sort early drug collection. Enjoy your holidays.
George best of luck with results tomorrow. Let us know. I'll pm you after about info on your doses but will let you get tomorrow out of the way first.
My feet are still sore intermittently. When it is sore it is very sore. And my hands. Moisturing away but the burny feeling is really annoying. Its not unbearable but i have been spoilt with very few side effects in the past. As long as it works i will put it with it

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

Hi Janieb, in response to your question, my onc has given me my prescription early as long as my bloods have been okay. When neuts have been low, I have had to come in again and he has trusted me that I won't start treatment unless all okay ( I have been his patient for over 3 years). I have only done this when I have been due to go on holiday so not very often. Hope this helps.

Have a good week

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

Hello Everyone
I was just wondering if any of you have ever been able to see oncologist and collect your prescription a few days in advance of starting them? My usual start day is a Tuesday but want to go on the Friday before so that o can go on holiday ! I’m guessing it might be an issue with bloods.
Janie xx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Mulligans. I also started my second cycle of Cape yesterday. I think that Lyndyloo is right in that they start younger people off on a higher dose. I saw my oncologist on Friday and she seems keen for me to stay on the 2150mg twice a day. As for side effects, I was extremley unlucky to get a rash across my chest that none of the doctors had ever seen before! It looked like 3rd degree burns! However, the same day I started the first cycle of Cape, I had my first Zometa infusion so maybe it was that that caused the rash. Other than that, I have had some stomach cramps (that may be the lactose in the Cape though as i don't eat dairy) some nausea and some 'looser' stools. Hands and feet have been ok, just a little tingley now and then. My main side effect seems to be tiredness but I still did a full week at work last week so it can't be that bad.

 

I don't have liver mets but I can see that George has had success on Cape so fingers crossed the same will be true for you. I have a malignant pleural effusion and one small lesion in my spine. They can't seem to find any solid tumours so mine is all just cells. My main issue is the breatlessness caused by the effusion but that seems to be resolving as I have lost 5lbs in weight but all my clothes still fit the same! I also asked my oncologist if could try another AI at a later date. I got 5 years out of Tamoxifen but only 6 months out of Letrozole. Think I'll do 6 - 8 cycles of Cape and see how things are then.

 

Hope you are all enjoying your Sundays

 

Littlelizzie x