Caelyx carbo... First Reccurrance

Well it is three weeks since my first combination of caelyx/carbo and not sure which I hate the most ..this or taxol. It's hard to put it into words but taxol was painful..really painful but I came round from it within two weeks. This one I am still soooo tired and can hardly walk 100 yards without being shattered..Being a mover this is driving me crazy. Also my dvt leg keeps swelling very badly and I feel like I am dragging a third leg around because it feels so heavy.

The reason I was put on the regime was not tumours ..for me I had a small amount of fluid in my pelvis and a small amount around the membrane round my liver (whatever that means). Then I suddenly developed ascites (again) and had to be drained. The nightmare of the non hospital bed and waiting so long for drain will be etched in my mind forever (not a good experience as usually my hospital is good). I am finding it hard to understand really what is going on and what is happening in my body so am going to ask again on Friday when I have my bloods....yes another dose a week on Monday...sooo not looking forward to it.

Plus side, I have booked my wedding in May and trying to focus on that. Good luck to all of you going through the same..the mind games this horrible disease does can send anyone over the edge.


16 Replies

  • Hi Tracy, sorry you are having a horrible time of it right now. I think the trick with the Taxol is to keep moving around every so often even if you are house bound. I found walking around the kitchen dining room and the hall did help keep my muscles from locking too much. My feet well I used soak them and still do in fact in a basin of water with epsom salts. It does help the pain and also find comfy shoes. Yes I also agree with the mind games because our imaginations tend to run riot. So you are getting bloods done on Friday and your next treatment Monday, it doesnt be long coming around at all. You have a great event to look forward to in May and best of luck with the plannning. I am sure everything will fall into place. My son is getting married at the end of April as he is living in another County all the planning is down there. But they are fairly sorted by now.

  • Thank you for your reply. Hope all is well with you and that the wedding is fabulous. Tracy

  • Hi there ,l am also on just CAELYX and also find the overwhelming tiredness tough to handle. I was started on caelyx not because of scan results but because I complained of abdominal discomfort and nausea.This is my fourth line chemo and I have to say grateful nausea not bad with this.Trying to get plenty of rest. Take care .

  • Thank you for your reply and your experience of caelyx.. I was getting a little panicky that my bloods on Friday would show anaemia as I am so tired..but if others get tired too makes me feel better. How do you cope with the recurrances.. I am finding it so hard. Tracy

  • Tracy recurrence is very difficult to deal with . Is their a support group near you check with your oncology team an talk to a professional . You need that support . I just finished Caelyx an I was very fatigued but my dose was reduced . Talk to your team Tracy an with support you wil get through this . Best of luck with all your wedding plans . Xxx

  • I don't drive and all support groups are at my hospital..2 buses away..which is why I go online to talk. My Mac doesn't check on me very much..only if I ring her and I feel like I am wasting her time as there are people much worse. I will try my Onc on Fri as he is very nice. I must admit I seem to be having more problems psychologically as I cannot bring myself up at all. Thank you for your wishes re wedding..hopefully looking at dresses tom if I can walk more than 200 yards haha. Tracy

  • Of course you are not wasting any bodies time . This is about you Tracy an you must look out for yourself so please be kind to yourself an do ask the questions an look for support . A big virtual hug to you . 😘

  • Thank you XX

  • Hi Tracy.The time flies between treatment,allowing for recovery period.As time goes on you'll know what to avoid or take which will not make the treatment so difficult.Tell your liason/chemo nurse your worries etc,they will be able to prescribe stronger meds for sickness etc.Look forward to your wedding,you'll be busy.xxxx

  • Thank you for your kind words. i will try again with my Mac but they seem to just let me get on with it. Tracy

  • Hi Tracy I am also on Caelyx (with carboplatin) I have had 4 cycles but missed out the Caelyx on the 3rd because of a nasty rash. Tried it again on the 4th 2 weeks ago and touch wood the rash has not come back yet! I have found I am not as tired on this as I was on taxol so we all seem to react differently to different drugs. I do however try to keep walking and doing light exercise which is hard sometimes but I think it helps. Also keep your iron content in your diet up or you can take Floradix a liquid iron supplement which doesn't cause constipation. (Check with your medical team first though just to be sure).

    The question of how to cope with recurrences is harder. It is my first recurrence too and I was devastated it had come back after only 9 months from end of first lot of chemo. I had a second operation but was told still needed another chemo to try and give me best chance of a longer break. I have no idea what the future holds but try as hard as I can to live in the here and now and have things to look forward to within reach, big and small. A wedding obviously one of the big things and hope you can enjoy the preparations and the day and lock OC up in its box way at the back of your mind! Easier said than done I know. Wishing you all the luck in the world,

    Madeline x

  • Thank you Madeline..I do hope I don't get a rash as my wedding is in the middle of the doses (around the third...oops). I think a lot has to do with my headspace.. I live quite rurally and don't drive..all my friends are at work and as getting out and about is more tiring I am getting depressed sat in the house..the hospital is two buses away and that is where all the support groups are.

    You are right that we must keep it boxed but I am finding it tough to do so. I have family problems with my daughters (who cannot cope with my illness and are not very supportive) Mum has dementia so I don't have her to support me either. I know everyone has problems and I am not saying mine are worse..I just seem to have hit rock bottom and cannot get up. Like you say the wedding is something to look forward to...hopefully without a rash. Thank you Tracy

  • My oncologist said the rash was quite rare so don't worry hopefully you won't get it!

    That does sound hard, being on your own so much. Are you able to get the bus to go and meet people on your better days? Also wondered if you have any volunteer driver schemes in your area - they usually only charge a small amount to cover petrol. My

    mum used one of these services in her later years when she could no longer drive.

    I hope things improve with your daughters, I don't know your situation but I know how hard my children have found it and how they just want everything to be okay, so they can get upset if I seem to be going through a gloomy period!

    Hopefully you get good support from your husband to be and can both look forward to your wedding day and beyond.

    And everyone here is always there for you too. Xx

  • Hiya ..yes my onc said not everyone gets it...phew!!My Mac has finally stepped up and I am getting a visit weekly from Easter. Bus stop quite far away and at moment legs very wobbly with fatigue :(. My kids like yours just don't get the downers do they?? My partner is brill..couldn't have done this without him !! Good luck with everything X Tracy

  • Tracey I suffered really badly with fatigue on this combo.  I just had my 6th and hopefully final session.   I like you am a mover and the frustration of being tired was driving me crazy.    I could not keep my eyes open and my body was like a rag doll !    I did struggle with this throughout.  I think the carbo taxol combo was easier to manage.   One upside is that I'm feeling better and don't have the nasty joint pain that I had for months after I had finished carbo taxol.  

    I'm thinking its a daughter problem lol I was accused by my own daughter of being ungrateful last week because I couldn't go to a overnight in a hotel the week after my chemo. I just about managed to get a shower. It really hurt and made me so cross that she didn't have any understanding of what way I feel.  Fortunately for her she can shut off and not see the real difficulties I face after each chemo   

    Hope you're feeling better soon xo

  • Hi there Julie, not as bad as before but still get tired very easily and it has messed up the old bowels a bit too. Got to go on low fibre diet, which is driving me crazy as I love fruit and veg. It has also attacked my gums and teeth and had to go emergency dentist for an abcess yesterday and found out I have to have two teeth out (one near the front) and will cost £222 to have a denture plate...why isn't the dentist free with cancer???? I wouldn't bother but with getting married I don't want to look like Worzel Gummidge ( bad enough I look so scrawny and old now lol). My daughter ( and this is the more sympathetic one! ) just said..'well don't smile at the wedding then'. The other one I haven't seen in 2 months! If I had my time again.. Top it all, the boiler broke Easter Monday..have no heating or hot water and £800 for new one..aaargh!. Best wishes Julie and thanks for responding

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