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Capecitabine, desperately need feedback on this drug

19 REPLIES 19
Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you for your positive advice, I realise it's early days for me, hopefully my next post will be very different, I really appreciate everyone's help 💕

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you everyone for your information and advice. 

I started on Capecitabine last night at 7pm, the dose is 1600mg twice a day.

I had a terrible night,  so took diarrhoea tablets and one for nausea this morning so I could eat and then take the Capecitabine with breakfast. I'm finding it so hard to eat as I've no appetite. 

I saw a doctor yesterday because I was having terrible pupatations, my heartbeat was like a steam train! He said that all the horrible symptoms were due to the liver cancer, everything,  the stomach aches,  bloating, generally feeling rubbish.

Does anyone else have no appetite? 

I probably already do the fasting Gillyflower, that is interesting, just hope I'll finally feel better soon.

I was 21 days without chemo so have been wondering if the liver cancer has run riot!

I take one iron pill a day, Adcal-D3, morphine and paracetamol for bone pain, oh and Omeprazole for stomach, probably no wonder my body is struggling. 

Thanks once again all you lovely ladies, your help and feedback is much appreciated 🥰🥰 xxx

 

Curly Top 64
Member

Re: Capecitabine, desperately need feedback on this drug

Hi I have been on Cape and Herceptin for about a year and a half now, I am on 4000mg per day, two weeks on one week off.  I have found Cape very doable, side effects have been minimal, as has already been said hands and feet have been my main issues but if you keep on top of it with creams they are not too bad. Cancer is in my bones, spine hips and breast bone. Cape has reduced some lesions and kept the rest stable, I am able to do most things, I do get fatigued sometimes but its manageable.  I hope to be able to stay on Cape a long time if possible, good luck on your journey and i hope it works well for you.

Gillyflower
Community Champion

Re: Capecitabine, desperately need feedback on this drug

You're welcome but sorry to hear you've been feeling so rough on your week off!  I go through phases of getting really bad bloating / digestion / tummy problems but am lucky in that they don't seem consistently bad.  Sending love xxx

Its funny isn't it how the drugs can affect us all so differently!  I know some people who get terrible Palmar-Plantar on hands and feet, I was like "I'm definitely going to get that because of my eczema already playing havoc with my skin..." - but no!  I don't get the PP syndrome, just aggravated eczema and my skin "goes freckly" in the sun very quickly now, to the point where I have freckle-type discolouration on my feet!

Something that might be worth thinking about for fatigue (Jan this might help you too) - keep an eye on your iron levels and speak to your Oncologist to see if taking an iron supplement once or twice a week might help.  By definition, I am not anaemic, but when I have my really "tired" days on my week off, I take a multivitamin twice during that week and I swear blind it makes a hell of a difference.  My blood results always come back with me just on the cusp of having low iron but not enough to make it officially "anaemic".

Oncologist recommended not to take vitamins every day though as they can off-set the work that the Capecitabine is doing but she said once or twice a week is ok.

The other thing I do to improve my energy levels is overnight fasting (ie. no eating after 7pm and no breakfast before 8am at the earliest).  I've noticed I definitely get a better nights' sleep and feel more energetic when I'm doing this consistently and there is clinical research to show it does actually have a massively positive effect on your immune system.

Anyway, hope everything goes alright and you start to feel a bit better really soon! xxx

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Jan,

It's interesting that your side effects are very different to others. Yes I will keep my diary of symptoms and I'll post again on here how I get on.

Had a giggle about you feeling like a vampire!

Many thanks for your reply. 

Shirley x

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Gillyflower, 

Thank you for your information and experience with this drug.

I'm getting a lot of positive feedback about Capecitabine, that's really good.  So you've been on it for just over a year and side effects are manageable. Great that they're are pretty minimal, but sorry that you have to manage eczema as well.

Not sure when I'm due to start, as I've a few problems to sort out first. Tomorrow I'll be at the hospital for bloods (something to do with liver enzymes). On the 28th July I'm to have an ultrasound to see if the liver tumour can be lazered, and presumably to see if there are any more of the them.

Its been 12 days of no chemo treatment now, and I feel absolutely awful in the mornings and then again around 4pm ish (terrible stomach aches, starting roughly at 4am, and really bad bloating, and generally just rubbish) does anyone else have this? Keep thinking that it's spread to other organs, I don't know of course, but it drags you down doesn't it. I thought that in the time off you were supposed to feel better! Although another lady said it stays in your system, so that would explain why I still have hot flushes and sweating even though the Letrozole has been stopped.

I remember you loved your walking and exercise, and was very inspired!

The hands and feet do seem to be the common side effect, the lovely ladies on this feed have told me about that.

Thank you once again for your feedback, and I wish you all the best xxx

 

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi WMJ,

Many thanks for your info, it did cross my mind that not knowing when I'm to be starting, the blood taking part is bound to clash with other appointments! Also it seems like taking a break isn't a problem.

What wonderful side effects we have to put up with! 😳 xx

 

 

Jaybro
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat

I read your post with interest. I’m halfway through my 4th cycle and my side effects are very different from others’. However, I do agree with my oncologist that it’s a kinder treatment if you think about hair loss, sickness etc. I started on the full dose and, having problems with swallowing tablets, I ended up having to take 12 x 150mg morning and night! It’s been reduced by 20% so now it’s 9 tablets at a time. 

My side effects have been dry mouth/throat, unpredictable bowels, and inexpressible fatigue. I have low blood pressure too, having been put on statins for higher BP just before diagnosis, so there’s a dilemma there. I haven’t had a single “day off” since I started but it has to be worth it. I’ve found the first 5 days of the cycle are kinder but the week off is just time for the drugs to carry on working so I drag myself to hospital and ask what’s going wrong. Obviously, the answer is nothing -  we all respond differently. Some people have sore feet, some get skin reactions, some are hit by fatigue. Some miss out on them and get their ‘week off’. Don’t worry about the side effects - they have to tell you what may happen but it doesn’t mean it will. Good luck, keep your diary of symptoms and get the dose reduced (it’s gauged by your weight) if necessary. I think my onc decided to cut the dose when I said I felt like a vampire, I needed blood!!

Good luck

Jan x

Gillyflower
Community Champion

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat,

I haven't been on the forum for a few weeks due to computer issues, so sorry I've only just seen your post!  What did you decide to go with in the end?

I am still on Cape - I have been on it for just over a year now and its absolutely been the best drug for me (the Palbociclib/Letrozole combo didn't work for me).  I actually found the side effects more manageable than the ones I was getting from Palbo.

The Secondary Cancer Facebook Group has a number of members who are also on Cape and many of them do very well, so it seems to be a very well tolerated and respected drug.

My side effects are pretty minimal and I'm on a dose of 1300mg twice a day.  My biggest issues is my skin - I have eczema and its been a lot more difficult to manage since I started Cape.  This week I'm on a 7 day course of Prednisolone because the eczema has just gone haywire all over my body.  However, as far as complaints go, its the first time in a year I've had major issues with it that stopped me from doing my daily stuff (like walking etc.) and its probably also because I don't do well with my eczema in the summer anyway.  Hands and feet are on the delicate side and I have to look after them otherwise the skin can break and become sore - but its not been awful!

Hope that you are getting on ok with whichever drug you decided to go for xxx

 

WMJ
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Shirley,

I have just started cycle 2….loved my tab free days. 
I too have have looser ‘stools’ hate that word! But I wouldn’t describe it as diarrhoea as not going more frequently but certainly if I need to go I have to go! Strange thing was this continued through my free week. I have definitely felt more lethargic than usual but have just gone with it. Going forward I will plan more around my free week rather than on tab days. Unfortunately like us all didn’t expect this to be happening and I have a few trips planned that clash with bloods etc. I may need to have a few extra days off the tabs, but will cross that bridge when I come to it! Who knows what will happen going forward? Plans can change quite quickly these days due to COVID never mind cancer treatments! X

 

Gina G
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat.

Glad to be of Help.

Good luck for Tuesday and enjoy your weekend.

Yes, please keep in touch.

 

 

 

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Gina,

Oh this information will be so useful, so good to know exactly what to expect.  I'm already on Omeprazole so that's good. The cream should arrive today so hopefully it's got Urea ?.

The tummy cramps and loose stool, unfortunately I've been suffering with for quite a while now,  I'm waiting to see a nutritionist. Good that you've had no nausea, hope I'll be the same. Great I love yoghurt and yes the fibre seems to be a problem at the moment so I'll be prepared. 

Loving your mix of food, and also that you drink wine, although I've gone off it somewhat,  still have a glass when I'm out!

I'm think I'm due to start next Tuesday, having blood taken then, so presumably it'll all kick off soon.  

Thank you for all this information, I'll let you know how it goes, you're so kind to take the time to reply, so appreciate it. 

Shirley 💕

 

Gina G
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat.

I am glad it can be of help. Just couple of things to add:

Keep topped up always with fluid and be aware it can also cause skin colour changes, with or without sun. 

One more thing, use a cream with Urea, it helps with dry skin..and my Dr had prescribed me Omeprazole 20mg, as acid reflux can make you feel nauseous.

In fact I have had no nausea, to speak of and only used Loperimide 3times in a Year.

You will get tummy cramps occasionally and sometimes with loose stool, but manageable. Eat then a plain low fibre diet. Oh a yogurt is fine, even a live one.

Regulate your meal times and take meds with food and don't rush. 

I have made no changes to my Diet and only take the calcium D3 given by my Dr.

I eat meat occasionally, eat chips and occasionally drink wine, amongst curry and Korean cuisine (what a mix).

Life is too short (regardless of CA) to restrict yourself pleasures.

It's what will keep you going.

Good luck and keep in touch.

KR...

Gina.

 

 

 

 

 

 

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Gina,

Thank you so much for your feedback, yes this really does help. It's looking like the hands and feet syndrome is one of the main symptoms. 

I've now spoken to my cancer nurse and have decided to go onto Cape, I've even ordered the cream! I shall be aware of the dose reduction too.

I was diagnosed in December 2019 with bone mets then started with Ribociclib and Letrozole which worked for 18 months, until the spread to my liver.

Very good to know that you could still work on this drug, and still are, and oh my goodness the fact that you were a chemotherapy nurse for many years,  that must have been so difficult for you. 

Enjoy your retirement, and thank you once again, you've been so helpful. 

Shirley 

Gina G
Member

Re: Capecitabine, desperately need feedback on this drug

The feed Back I can give to any of you Ladies about to start, is that it is a do able drug.

But please ask Team for dose reduction, if it is too much for you, please don't suffer in silence. 

I have been on it for over a year, although the side effects are accumulative, mainly hands and feet syndrome.

I was diagnosed in March 2018 with SBC.

I am not on full dose, but 80% and currently working as a practice development Nurse, although ironically I was a chemotherapy nurse for many years. However, I will be retiring this summer.

I Hope this helps a little.

Gina 

 

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi WMJ,

Thank you so much for very interesting reply, I realise it's early days for you, and am so sorry that you have secondaries too.

The information you've given me is exactly what I wanted to know, the in's and out's of how it effects everyday life. The hands and feet side effects seem more common than the other ones, I wonder why this is. 

I'm hoping to speak with my BCN on Monday so she can give me guidance and take me through everything, and most importantly emotional support. 

Very pleased for you that your bone spots are currently stable,  and so hope that this Capecitabine drug will do the trick for both of us 🙏. You've certainly put my mind at rest, can't thank you enough. and I wish you all the very best too XX

WMJ
Member

Re: Capecitabine, desperately need feedback on this drug

Hi there,

I have just completed my first 2 weeks of Capecilabine and now on my free week, which is bliss. Bliss to not have to take those 8 tablets, however I am already on a lot of meds for my heart etc. Going forward I will plan my time better and save trips, outings for my free week. Although we do have trips already planned and hopefully they will go ahead regardless of where I am in the cycle. It is very early days but so far the only issue I have had is I am feeling slightly more lethargic. I am lucky as there is only my hubby & I at home,  we don’t work and had made a lot of lifestyle changes before I was diagnosed with secondaries. I am putting cream on my feet each night and wearing thin cotton socks to obscure it and I apply hand cream throughout the day.  Like you I was devastated to have to go back to chemo, but I am also thankfully I still have choices and that this choice means I can take it at home. I have 2 quite large lesions on my liver, which have become unstable with the other treatments I took. The 2 bone spots are currently stable.  I am just hoping the capecilabine will stabilise the b#goers or shrink them🙏There are lots of ladies contributing about capecilabine and they say it is certainly durable. Take care, speak to your BCN and team in order to make an informed choice. Unfortunately it is sometimes difficult when given the choice. I wish you all the very best XX

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Secondarysister2,

Thank you so much for your reply, and yes I've read many posts from Gillyflower, she is indeed very knowledgeable. 

My cancer is HR-positive/HER2-negative, although on other paperwork it's got ER positive PR positive HER negative, I assume it's all the same!

Unfortunately the Ribociclib no longer works for me, and it's spread to my liver, I'd been feeling rubbish for weeks so wondered if something was wrong.

Sending you and your mum lots of hugs ❤ and love xxx

Secondarysister2
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat,

 

I think Gillyflower is on Cape from what I remember from one of her posts, so hopefully she will see your message and give you some feedback. Gillyflower always gives amazing advice!! I think it is a very common drug to take after Palbo or Ribo, so there should be a few people who can give you some of their experiences.

I'm sorry the ribociclib hasn't worked for longer. Would you mind me asking what type of breast cancer you have? My mum is currently on the ribocilib, letrozole and denosunab cocktail for estrogen+, HER2- lobular bc. I'm supposing if you have the same type of cancer, this will likely be my mums second line treatment when the time comes too.

Keep us all updated with how you get on. I'm sure you will be in good hands and they will get the nasty little buggers under control again for you. Sending you lots of love! X X

Timmycat
Member

Capecitabine, desperately need feedback on this drug

Hello lovely ladies, 

I've just been told that I have to change my medication from Ribociclib with Letrozole  which has worked well for 18 months, for bone mets, but now doesn't, to either Capecitabine or FEC chemo, so the 3 weekly drip treatment for 6 cycles.

Sometime in June the evil cancer spread from the breast to my liver, had the chat with my onc yesterday and now am devastated that it's in both bones and liver, apparently it's 2cm at the moment. 

I'm terrified of both treatments but only have a few days to decide. I'm wanting to go the Capecitabine route, and I'm sure I've read on this forum that it's good. But having read the information the side effects sound really terrible...is this true?

I'd really appreciate your feedback and comments, sending hugs to you all, as I know everyone has their own heartbreaking and awful struggles.

Timmycat 💕❤ xx