Any advice please?

Hello, I am new to this friendly site although I have been diagnosed with stage3 oc since Feb 2007. I am currently on my 4th line of chemo, single agent Caelyx every 4 weeks. I know quite a few of you lovely ladies are also on Caelyx and I just wondered how you are all coping, as I am finding it quite a struggle. Lack of appetite is the main problem and overwhelming tiredness! I am due for my fourth treatment on Friday. Thank you in advance for any replies. Theresa x

19 Replies

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  • Hi Theresa,

    I am on Carbo/Caelyx and I am now halfway through ( it is my 3rd line of chemo ) I had a scan last Friday, I have chemo every four weeks and I am tired most of the time ( I think I am asleep more than I am awake ) my reaction has been mixed sometimes nausea, cold sores, and mouth ulcers but I still have found it easier than Carbo/Taxol which I have had twice...sending you best wishes love x G x

  • Hi,Sandra had single agent caelyx as her 6th line but by this time she has a fair amount of progression before she started. I must say she only managed 2 cycles, spent most of those 2 mths stuck in bed, not eating much, her CA was not dropping even just prior what should have been her 3rd cycle. The clinical decision was to stop any further treatment. This is not meant to scare but highlight her stage of her journey. As a 4th line treatment I would expect much better results for you. So keep at it and things should improve. Xx Paul

  • Thank you both for your replies and kind words. It has put my mind at ease, I was not sure if it was the treatment or symptoms of the disease, it is in lymph nodes in stomach. Sorry Sandra could not continue with the treatment Paul but hope she is feeling better. Thank you also for your kind wishes Gwyn and sending them back to you. I have a scan sometime in the next three weeks to see if things are working. Theresa xx

  • Hi Theresa, I am interested in the replys to this post as I have had one cycle of second line caelyx ( next one booked in for Thursday ). To be honest so far it hasn't been too bad with just a bad head and nausea for the first four days. My white blood cells have taken a big whack and I think this is going to be my biggest battle. At the moment my appetite is good and i am eating well, early days I know but hoping I can keep it up.

    Love Ally xx

  • Thanks Ally, I'm in Friday for number 4! Hopefully my bloods will be ok as I've had a cough and cold, I'm blaming the kids being back at school and bringing germs home lol. Hope you're bloods are ok for Thursday. T xx

  • Hello Teresa, I found chemotherapy not as bad as I feared, and 10 times worse! Let me explain. In general, it was fine but I had not expected severe constipation. When learning to type, many years before ovarian C, I came upon these lines : it is a long way to the end of the road and strength and courage often fail, but do not give up. I soon decided I must give this my best shot and not expect too much, too soon. Each day I tried to do a little housework, take a walk, ate what I fancied, did crosswords ( to exercise my brain) and knitting as craftwork.....taking it all slowly and giving myself and the treatment a chance. After all, if you have a bad cold or the flu you don't feel like going on a ten mile hike, and that can take some weeks before you regain full strength. I send you my love and good wishes, Valerie ( not sure when I am "Olive" as at one time that formed part of my password!

  • Hi Theresa,

    I have just finished Caelyx as single agent 2nd line chemo.

    Extreme tiredness, cold sores, sore mouth (not ulcers), skin sores and laterly after 6th cycle my heals were very red and sore with blisters. I must admit I found Caelyx much worse than carbo/taxol. I have had an infection after every cycle and ended up in Withybush Hospital in West Wales while away last month.

    I hope you are one of the lucky ones and don't have too much trouble. I think I was surprised as most people were saying how easy they found Caelyx.

    Chris xx

  • Hi Theresa

    I am just over half-way through carbo/caelyx regime - 3rd line chemo. Symptoms seem to be getting worse after every treatment. Have had nausea, constipation, mouth ulcers, indigestion, headaches, restless legs. I too have found this worse than the carbo/taxol regime. Had 4th dose last Wed and feel like crap today! My appetite dips a bit for a week or two but generally has been good and my bloods have been ok. My mid-term scan showed good reduction in the tumours so will continue course. The tiredness is probably the main side effect with all chemo treatments, but just take it easy and rest whenever your body tells you to. I hope everything goes well with your scan and your results are positive. Love and hugs Colette xxxxxxxxxxxxxxx

  • Hi Colette, my symptoms got worse as the treatment progressed. My mid term CT showed no improvement but no progression so continued with final 2, thank goodness it's over now xx glad you had better news

    Chris xx

  • Glad to hear you've finished your treatment now Chris. That must make you feel good, and even though no improvement at least there is no progression - long may it continue! xxxxxx Col

  • Thank you Collette, Chris and Valerie for your replies, this is such a lovely site, I'm so glad I plucked up the courage to post! As I've put earlier at the moment I've got a dry cough and cold so as treatment is due on Friday I thought I'd go and see my GP, I haven't actually seen him since my diagnosis in February 07! He wouldn't prescribe me anything for the cough as Fridays a long way off, anything could happen! and then said" you've been having chemo for ages, aren't you abit fed up!," I responded with "I am happy to be alive!, he then continued with his words of wisdom with, wait for it " if you're gonna get it ovarians not a good one to get is it?!". It reminded me why I haven't been to see him in 6.5yrs!!!! Oh well at least I've got you lovely ladies and gentleman to talk to if I have any further worries. Love to you all, T xx

  • Hi Theresa

    I too was on caelyx 3rd line treatment but after only 2 cycles ended up in hospital for 10 days, never felt so ill. extreme tiredness, mouth ulcers bad stomach and skin peeling like cardboard and no energy to put one foot in front of the other. letter from oncologist said due to extreme toxicity I am unable to have any more treatments, so, have been put on Tomoxafin as a possible to hold progression in check. Everyone seems to react very differently to Caelyx as others I know have not had it anywhere near as bad. fingers crossed for you to be lucky.

    Hugs

    Bettyann

  • Hi Bettyann,

    Hi, I had Caelyx earlier on this year. It did make me feel tired, however it was straight after some pretty major surgery to save my only kidney, so that could make made the tiredness worse. I have jut discovered that using sweet almond oil on my skin and nothing else helped me with my few skin issues that lingered on after the Caelyx stopped.

    My only advice would be to listen to your body, if you can rest please do so. If there us anything else you would like to know, please ask.

    Take care.

    Fiona.

  • Thanks Fiona, I know I need to listen to my body more and rest when I'm tired, it's just so frustrating though isn't it when you want to do things and can't. I'm 43 and feel so guilty when my lovely hubby's ironing the uniforms and cooking the dinner after working full time, he just tells me it's in the short term and just to concentrate on getting better. I am very lucky. Txx

  • Hi T

    As for feeling guilty, my counsellor is always telling me that we are responsible for our own thoughts, nobody puts them in our heads apart from us.

    If your hubby is like mine, maybe by doing the ironing, etc, it is helping him cope as it must be awful watching your love done have any illness, let alone one like this. You say he is lovely and does not mind doing the ironing, so please listen to him and stop beating yourself up as I bet you are very precious to him.

    Please don't feel frustrated, it is only recently that I have started to accept that in order to fight this disease and stay alive for my boys I will have to let go of doing all the " household jobs ". Having finally learnt to do this, life is so much easier.

    I had a breakdown earlier in the summer, it was always going to happen, but please don't let things get to that stage, I was just too bloody minded for my own good, but this posting is not about myself, so I will stoo talking about me.

    I have a McMillan counsellor who I see every week, do you have access to that service as it really helps.

    When you get frustrated, do you have the energy at the time to get out for a walk? I have a dog, she is proving to be my salvation as I refuse to stop walking her, even if I can only walk a few yards.

    Remember, it is only short term, keep your words in your head at all times. There is life when chemo stops.

    Take care.

    Fiona.x

  • Thank you Fiona, everything you've said is so true, I do need to realise that housework etc is not the be all and end all, my aim is to be there for my boys also, so a lot of what you said about yourself could actually be about me! I haven't got a dog only a 3legged, no tooth rescue cat ( I kid you not) who comes and lies on the settee with me when I'm having a nap lol. Thank you again for your kind words and advice, I think I'm just abit more down because of having this cough and awaiting scan results etc. lots of love T xx

  • Well Georges Girl, I bet you are too, you could change it to Georgious Girl!

    I love to picture of the three legged cat plus it having no teeth!

    Us women are all the same, when this happens to us we do not know how to let go. I am lucky to have a lady that does, my hubby has a global job, he used to be away 70% of the time.

    This summer I had a rather big meltdown, it had to happen and taught me what my limitations were. It was rather horrible at the time but I have come out stronger. I don't know if everything I say is really true, but if I can help stop another person having a meltdown then I am all up for it.

    Two weeks ago, I was feeling despondent and thought as I was having no active treatment I may as well not be here.

    Having put my first real posting out on this site, the response was so overwhelming to my post that I was spurred into action. I now have the spring in my step that I used to. I think to hell with the bloody tumour, it can pull all it likes but I will not give the damn thing the ability to screw my head up any more.

    You have every right to feel down, especially if you have a cold, so please make a hot toddie and wrap your feet up with your three legged wonder! or even better, your lovely Hubby.

    Fiona.x Fingers and toes crossed for your scan results.

  • Hi T.

    Well I think you have found a good friend in Fiona, what caring and very honest advice she has given you, I do think this site shares wonderful and life experiences we go through this journey we find ourselves on.

    Long may it continue.

    I am also stage 3c since 2009 but have not had caelyx, I am due for something again, so I have made a note of this one!!!

    Good luck for your scan results.

    Regards Barbara.

  • Sorry for the late reply, was at hospital yesterday, generally feeling yuck! Tried to get out of Caelyx number 4 Friday but bloods seem ok so it's going ahead. Yes it is a wonderful site, I'm so glad I plucked up the courage to join and start talking. Good luck with your next lot of treatment, whatever that may be. Xxx

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