Firstly, I'm sorry to hear that Capecitabine has stopped working for you, I was really upset when Ribociclib stopped working for me after 18 months. But really pleased that you had over 2yrs with good results.
I've restarted this morning on Capecitabine and you've given me hope and encouragement, I'm prepared for the side effects and it's good to be back on chemo knowing that my body now has something to fight back with, I have been worried that the liver cancer was spreading, not so worried about the bone mets as Zometer lasts in your system.
Good luck with your biopsy results and your new chemo, and many thanks for your reply, so reassuring.
Thank you so much for your reply. I started Capecitabine 2 days ago and I have to say I'm beginning to feel a bit better already so life is definitely better on medication. My feet have started tingling so I'm assuming the hand and foot syndrome is on its way but I'm armed with cream recommended by everyone.
I really hope they find something new as quick as possible, I was 5 weeks without medication a begun to feel quite unwell. New things are being found all the time so just keep those positive thoughts going.
Sending you a hug. Xx
I've been on Capecitabine for over 2 yrs. It's kept me stable in that the tumours didn't grow, for over 2 yrs and cancer markers hardly changed.
Side selects were OK, much easier than fec for me anyway. I've kept my hair and learnt to live with the aches, as cancer treatment is all about how you tolerate it versus the potential benefits.
I was told it wouldn't work forever and sadly, it has stopped working. I'm now waiting for biopsy results to determine next move.
If the choice is yours to take, I'd say give Capecitabine a go. On balance the side affects are worth it.
Good luck for the future.
Thank you, I've had balance problems for some time and tend to struggle with concentration for driving so avoid driving as much as possible. With fatigue I'm lucky I'm not working so can take each day as it comes.
It's so nice to finally hear of other people's experiences it makes the side effects more manageable to know they are due to the drug and not the cancer. Xx
I too have the balance problem and the fatigue! I’m on cycle 3 and so far have no problems with hands and feet but some days my balance is so off! I have aching behind the eyes too. My nurse says that everybody metabolises the drug differently hence some have different symptoms. I’m on 3000 a day after 2 dose reductions. On the higher dose I couldn’t even trust myself to drive because of the balance/ visual disturbance.
Well here’s hoping it works then at least the side effects are worth it.
So you're up to cycle 5, really good to hear that your blood markers have dropped. I have fatigue all the time and I'm still waiting to restart Capecitabine. I haven't heard of lack of balance, so hope that passes for you.
I've now got to have my third blood test (this Tuesday 17th) platelets still too low! I'm definitely going on the hunt for blood 🤣 yes, vampire life here I come!
Hopefully you Jan, Tracy De Boorder, lovemama and all the other ladies in our position will have success with this drug, sending my best wishes and hugs 🤗.
Good news Jan, although not about the SEs. I have just finished cycle 3 and my biggest issue is fatigue, I don’t want to sleep all the time but I don’t have the energy to do the things I used to do. I also have a bit of dry skin on toes and my big toe is quite red and sore. All manageable and hopefully worth it. All we can do is hope for the best with these treatments as they react differently on us all. Take one day at a time, that helps me so much. My liver has been misbehaving for the last 6 months, hoping my recent scan shows the Capecilabine has done what it should do & shrunk the bu99ers! 👹
Take care & stay safe xx
Just to update you on the dreaded capecitabine. Cycle5 has not been so bad apart from the fatigue and lack of balance so obviously I’m getting used to it BUT in the first 4 cycles, my blood markers have dropped from 128 to 86 to 27. I am absolutely delighted although I know things might change next month, next year…I’ll take those readings and carry on downing the tablets and hope.
I think I’m just unlucky with side effects. I hope you are able to restart the drug once your blood platelets improve. Maybe it’s you who should turn vampire??
Thank you ladies just spent last half an hour reading this thread. I'm due to start Capecitabine next week having been on palbociclib and anastrazole for the last 2 years. It stopped working about 5 weeks ago and I've been without anything for a while, secondaries in my mediastinum and lungs are very active and I've been feeling pretty pants really but you've all given me a fresh outlook that it could all settle down again with Capecitabine. I've got some cream in in case of the sore feet but if it's the right thing to say I'm looking forward to getting started and maybe life can get started again.
Thank you all and sending good karma and big hugs
Hi Timmycat, I understand your feeling.
My triple positive breast cancer is at stage 4 with suspicious cancer found in liver, lung and biopsy confirmed met in sternum. After 8 cycles of Taxol, Herceptin and Purjeta, in at least 6 of my 3 monthly CT scan, my onco. told me there is NOTHING in liver, lung and my sternum is healing (no activity on PET scan). I thought I might be the very lucky one who magically achieved NED.
Then all of a sudden I had a severe reaction in my 7th and 8th CT scan (hives all over body, low blod pressure 30/60, tongue sting) It is ok. No more CT scan with contrast for me forever. But on the 8th CT scan result they found 3 masses at the very top surface (in the skin ??) near my sternum and one close to my heart though still nothing in liver, lung and all the organs. I will soon start my 2nd line anit-HER2 treatment.
Cancer is suck !!!
I wish you can resume and continue on CAPE as long as you want.
Pls refer to page 2.
Copied and pasted from below link
"Eat a balanced diet that includes foods high in iron. These foods include green leafy vegetables, liver and cooked red meats."
Leafy green vege. like spinach may not help but still good to have it as part of a balanced diet.
Thank you for this information and the link to a website. Also for all help with diet.
Unfortunately I'd just finished my first cycle and when the results of blood samples came back the news was not what I'd expected. My platelets are too low and I'm anaemic so I'm to have blood samples taken again this Thursday, and had to halt the Capecitabine.
Just when I thought I was getting somewhere!
Below is the patient handout found from the same Canada website.
Edited : posted the wrong link for other cancer and corrected as below
ps. cancer is suck
ps. I always go to different websites including this forum and CancerResearchUK to compare notes
ps. I studied in London, UK when I was young
I don't have any experience of Cape but from what I found on my cancer center website loss of appetite (or anorexia) is one of the side effects of Cape and maybe, you would like to check with your medical team.
Pls refer to pg 3 under organ site "gastrointestinal" for the side effect "anorexia"
ps. Besides medicine which we may not want, I found some (GENERAL,NOT particular to breast cancer) dietary management suggestion on the website.
Encourage or Promote adequate hydration and daily oral intake by:
- Increase fluid intake as tolerated (e.g. soup, shakes, smoothies)
- Promote high calorie/protein fluids with medications and throughout the day (e.g. full-fat
milk, homemade smoothies, nutritional supplements).
- Limit fluid intake to 30 minutes prior to meals to avoid feeling full and 2 hours before
normal bedtime so as not to interrupt sleep. Small, frequent meals (5-6) per day.
- High calorie, high protein foods (e.g. cheese/cottage cheese, eggs, Greek yogurt, nut
butters, protein bars, avocados)
- Eating largest meal when feeling most hungry regardless of time of day
- Sitting upright for 30 to 60 minutes after eating to facilitate digestion
- Avoid preparing foods with strong odours or ask caregivers to prepare such foods and
avoid being present during the preparation
- If fatigue or meal preparation are a problem, suggest the use of convenience foods (e.g.
frozen foods, canned soups), take-out foods, catering service, family or friends preparing
meals, or Meals on Wheels®
- Oral nutritional supplements as needed to augment diet; particularly if patient has
symptoms that interfere with nutritional intake or absorption (eg. Ensure, boost)
- Manage contributors to anorexia eg. Chronic nausea, constipation, taste alterations
- Avoid spicy foods and limit drinks with coffee and alcohol
- Make mealtimes as relaxing and enjoyable as possible. Ask for help when preparing
meals. Try keeping a daily log of nutritional intake
Yes I take an omprazole every morning. Thanks for your tips on food and drink for tummy troubles, there're very welcome because I still get terrible bloating in the early evening, and by about 7am it looks like I'm expecting baby no. three!! 🤣 I'm 66!
I don't think I'm on full dose (1650mg twice a day) I don't know what my percentage is.
You have been very helpful, thank you for taking the time to help me out 💕.
Hi Timmy cat.
Glad to know you are on the mend.
The omprazole does help.
I too fast at night from 1930-0830 in the morning.
For the tummy troubles eat a banana at least a day and soda water with lemon is good to sip.
Alcohol can definitely cause diarrhoea, (for me beer and cider). But the occasional small red wine or rose wine soda is ok
Avoid food that is too high in fibre as this will cause much gut action.
Finally ask Dr for dose reduction, if you are on the full dose, as I am on 80%.
I hope this has been helpful.
Hi Gina and everyone,
It's now day 4 of no Capecitabine and for the last 3 days I've been feeling so much better 😀. Appetite is more or less back and I'm actually starting to enjoy food again. I've been given supplements to help, and I really appreciate that, but hell, the taste has much to be desired!
So almost through my first cycle and I'm sure the Cape is kicking in.
Many thanks again to everyone for your helpful and lovely comments 💕 xxx
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 💕
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
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.
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
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.
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
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
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!!
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
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
Glad to be of Help.
Good luck for Tuesday and enjoy your weekend.
Yes, please keep in touch.
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.
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.
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.
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.
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
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
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
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
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