Thought it was too good to be true, had my first Caelyx 6 days ago, was doing well then the sickness kicks in, headaches, loss of appetite, no energy. I'm taking it easy but my onc did say this regime is easier/gentle on the body, at the moment I don't feel that this is the case. I'm hoping it will only last a few days then I can get back to being positive and getting on with life.

Wishing you all well xx

24 Replies

  • Sorry to hear u are unwell. It's disheartening when we expect to be better than we are. I'm quite unwell too after just starting second line . I'm but better today than yday. Let's just think about how good the good days are after a bad one . Really hope you feel better soon

    Take care and seek any help you can

  • Thank you it is so disheartening!! Glad you are feeling a bit better today and tomorrow will be another better day fingers crossed.

    Take care to x

  • Hi, I have not had Caelyx, but hang in there, if the anti nausea are not working, ask the onc nurses to change it for you. I think eating lightly and small amounts can help. Some days on chemo, I just had crackers and bovril or Carrs water biscuits but then you do pick up again.

  • Thank you have started to eat light bits so feeling a bit better tonight, yes will speak to my onc and see if they can change them.

    Crackers sound a good idea!! Thank you take care to x

  • Hi. I'm on Carbo and caleyx. I thought I would get it easier then when I taxol but NO.

    I've had two treatments and have been exhausted. I've felt really horrendous for 6 days after chemo last week. I hope that this eases. I did get out and about today thankfully and do feel a lot better. I think my expectations were too high and looks like I'm just going to have to balance the good and bad days

    I got melts for the sickness and they worked for me. There is odanstron or zoffran melts. Both are very good. Hope you feel better soon x

  • Thank you for the tip, I hope each day you feel a bit better now, days like these you just have to rest. I'm the same feel lots better today, just feel a bit lethargic now.

    Wishing you well take care xx

  • How often are you on it as i am due to start that regime shortly? x

  • I'm on it every 4 weeks for 6 months X

  • Hi I'm sorry Caelyx has given you such horrible side-effects. I was told it was easier to tolerate but have known a lot of women who feel unwell on it and some have said it makes them fed up too. I was interested to read your post as I'm sure it will be suggested for another time and I'm not sure I want it.

    I hope it gets better with all the good advice you have her and hopefully support from your oncology team and CNS.

    xx Annie

  • Thanks Annie, I must admit I didn't expect it to hit so hard, but feel better today, I think my expectations were too high, when my onc said it was easier I thought that's good I can carry on as normal but should of known that with any chemo you are going to get some side effects. I was on carbo/taxol earlier in the year and I was unwell for about a week after that and tired most of the time until the next treatment. With what we are going through its not easy is it and as my CNS says everyone is different, you don't know how you are going to react to any drug until they try it, it's very hard!

    I'm so pleased I can come on here and there are people like yourself to give good advise and know exactly how you feel.

    I am usually a positive person but the last few days I have been fed up and sorry for myself but I do feel more upbeat today.

    Wishing you well Annie, let me know how things are going xx

  • Do make sure you tell your CNS if you feel fed up. It may be there's something they can give you to counteract the effects of Caelyx. At least I think it helps to know it may be the drug making you feel less positive than you're used to as it's horrible to feel a stranger in your own body.

    I'm glad you feel more upbeat today. I finished third line Carboplatin and Paclitaxel on 1 October. I had dreaded it but the concoction suited me well and I didn't have many side-effects at all apart from one bad day 3 days after treatment. I didn't expect a third line could go so well.

    Sending hugs. xx Annie

  • I will do thanks Annie.

    There are so many different regimes they can give you isn't there, I'm so pleased that you found it easier than you thought it was going to be, it's hard enough. Because you've been through so much before you do dread what effects you are going to have, I know I did, you just never know what's going to hit you.

    I'm glad you've finished third line on a positive.

    Hugs to you to and thank you


  • Hello, I too had my first Caelyx recently on 2 November for 2nd line. After initial few days, it just knocked me for 6 and I've been between bed and sofa for over a week now. Thankfully I have been sleeping soundly at night but that hasn't stopped me napping throughout the day which is not like me at all. Eating little and often is also better for me and the past few days I've made it for a short walk with the dog. I really have been taken aback at how much it has effected me compared to carbo/ tax which I thought would be a tougher regime. I do feel I'm pulling through and having my bloods checked on Monday. I wish you all the very best and hope you see an improvement soon.

    Jane xx

  • Thanks Jane, so sorry you've been so unwell for a while, I'm feeling better today but just resting now, it's horrible how it affects you isn't it!!

    I'm just eating bits that I fancy at the moment but do feel a bit more upbeat than the last few days! Thankfully!

    Hope you feel bit better each day now take care xx

  • Hi I'm on carbo caelyx. Finding it harder than carbo taxol , I'm Feeling exhausted and nauseous and constipated for at least 7 days despite the ondansatron , I just thank goodness this is only every 4 weeks as I feel my body needs time to recover . Thankfully I have no skin issues or neuropathy but also my numbers are rising a lot my onc is hoping they will come back down as this regime sometimes takes awhile to kick in , I'm hoping to get an app for a ct scan and bloods before I see her again dec 1st , best Christmas pressie would be that's it's finally working . Hang in there with this combo some people do have very good results despite the side effects , Jue x

  • Thank you, I've heard the same, it takes time. Yes mine is every four weeks to so I'm hoping like you that my body has that time to recover.

    Wishing you well and a positive Christmas to!!!


  • Hi I had carbo/caelyx this year which I finished about 3 months ago, I did feel pretty nauseous and was actually sick a lot on the first session (worse than other regimes and I've had a lot!). They gave me different anti sickness EMEND, which you start taking an hour before chemo and then for next 2 days, plus maxalon every day for about 4 days and got it under control but still unpleasant. I didn't get much else so felt fairly OK for the other 3 weeks of cycle. I sucked ginger sweets, mints and drank lemon and ginger tea and found soda water and a little lime cordial helped too plus crackers and ginger nuts.

    I'm on a clinical trial now of new drug to cut off blood supply to tumours as last chemo didn't do much and CA125 rose rapidly at the end.

    Good luck with yours and I know it has helped some women

    love Francesca x

  • Thank you Francesca I will try it all.

    Good luck with your trial all my best wishes and positive thoughts to you.

    Lots of love


  • I'm glad you posted this and it's been useful for me to read the responses. I really underestimated the tiredness with this as I thought it would be much easier. Feel better now after reading this as its not just me as I was getting worried and frustrated with myself xo

  • I find it really helpful and supportive, lots of good advise and tips to help with any side effects and also to feel you are not the only person going through it. Glad it's helped you feel better about it. Best wishes xx

  • Hi KM ,a friend of mine wsa the same on caelyx ,had great result over a year free and felling great xx

  • Thank you so much for your reply, as we all do, need positive vibes xx

  • Hi - just wanted to add my caelyx experience! I was also under the impression it was generally easier to tolerate; have had 3 cycles of 6 now. Was plagued with horrendous side effects as you all have described so had a dose reduction this time coupled with a course of injections to boost the bone marrow to produce more white blood cells so has been better thank god!

    As people say we all react so differently!

    Happy weekend to everyone xxx

  • I'm not looking forward to my next one to be honest!

    I'm having 10 so will have to wait and see but I will be telling my onc how I've been feeling. I'm glad they've at least tried to make things easier for you. Best wishes xx

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