On the caelyx merry go round!

Good morning everyone!

Well started 2nd line treatment of caelyx 2 days ago - feel pretty good so far but absolutely shattered with a face like a boiled lobster - thankyou steroids! Just slapping the udder cream on like a good un - god what we go through! Sorry to rant ladies - hubby at work ( he snored like a pig in the proverbial all night lucky bugger )! Heyho on we go - hope the sun is shining for everyone. Xxx

27 Replies

  • Hi claire how are you feeling now? No I didn't get anything - was checking emails last night. I'll message you my address again Xxx

  • Hi Maz,

    hopefully the boiled lobster look will wear off soon when you stop the steroids! Fingers crossed you will get through it with few side effects- that's what I'm hoping- I start second line caelyx/ carboplatin on Monday!!

    take care

    Jan x

  • Aw good luck Jan - I'm not having carbo this time round as had it last year. Hope all goes well for you Xxx

  • Morning Maz, I hate the steroids, I always look like I'm going to combust after taking them lol. As for snoring don't even start me in that one. Hubby was snoring like a goodun on Wednesday night (he had a few glasses of wine before bed) and as I was still in the throes of steroid rage I could have cheerfully tipped the mattress up and thrown him on the floor. Did I give him a hard time the following morning 😡😡. I haven't done Caelyx so can't offer you and tips other than to say keep smiling, I hope the lobster look subsides soon and I hope hubby doesn't keep you awake tonight, love Kerry xx

  • Well kerry you've made me

    laugh and that's a fact! Lay there last night and could cheerfully have plunged a knife in his throat god bless him! Had to make do with a sharp elbow in the side to shove him over! Hope you're feeling better now? Xxx

  • Glad I made you laugh, Make sure your sharpen your elbows in case he starts again tonight lol x. I'm getting there thanks, my appetite has come back which is good. I just need to get ride of this chemo brain feeling lol x

  • Haha kerry I will! Fully understand the chemo brain - don't think mines ever been back on form since last year! Just can't seem to focus on anything or be organised which is so annoying! Here's to a peaceful night for both of us! Xxx

  • Here's hoping x

  • Hi Maz , Had Caelyx Carbo 4th yesterday all going ok have had delay due to low neutrophils, Hate the lobster look and forgot to take second lot at lunch time so going to be staring into the night unable to sleep now silly me, x

  • Hi peanut 2 - yes I had my last cycle last year delayed due to low neuts - just seems to go on and on for ever more doesn't it? Nights are so long when we're lying there - I'm at the stage where I'm beginning to dread them quite frankly! Need a hammer to the head lol xx

  • I hope you continue to feel okay, the face is probably due to the steroids. There is nothing more annoying than a man who has no problem snoring when you are wide awake. I have heard other ladies refer to this udder cream, I have not seen it here in Ireland I did see it on sale in Nice last year and I was a bit taken back. I gather it reduces the redness, well to know for the future. Best wishes on your treatment

  • Hiya Girl. While not on Caelyx, I recognise the side effects of steroids - i hate them, but know they play an important role in ensuring we get the best 'value' from our chemo treatment. They play havoc with my appetite, and I am always hungry....which of course is not good for me as i am high levels of anti-nausea tablets, which results in constipation.

    Oh the trials & tribulations of cancer treatments and what we must suffer!!!!!

    Hope you get some sleep tonight though and while the sun is very much hit & miss here with us in Cork, it does keep the grass & trees green.

    Hugs & Regards


  • Hello Maz. My Mum had 2nd line Caelyx. They obviously started her on a high dose and after three the got really sore hands and her feet were quite sore too. Her hands were peeling. She was using udder cream. Apparently cyclists use this!! There's also some cream called Aveeno which is good and you can get it from Boots. It turned out that the oncology unit reduced the chemo by 20% and Mum's hands soon got better. So look out for soreness in your hands and feet and nip it in the bud. Mum's cheeks also got red and itchy with the steroids. But everyone is affected so differently.

    Anyway, best wishes. Jane x

  • Thanks Jane - yes you mentioned the cream from boots before so will keep an eye out for it when I feel up to making the shops! Feels like such an effort!

    So true we all react differently to these drugs! Hope your mum is doing okay xxx

  • Hi Maz, and other carbo/Caylex suffers.

    What have I missed, haven't had the red face ! Just had number 4 of 6, no rashes, red feet or hands, ulcers, not much tiredness. My issues are hot burning feet and I do use the mo cream, it makes them soft and cool. I get very very hot at times specially in the evening, and was having night sweats, It also seems to affect my digestive system and I get very gassy after about a week on and get lots of twinging over my liver area, where I have 4 of the perishers, hopefully that's the drug working. And terrible sinus problems with a dry mouth over night which keeps me awake.

    Reading other posts I feel so far, touching wood I have been lucky, still out and about and in the throes of moving, just to make my life more difficult, but it is going to be a good move for us and I am looking forward to it.

    And - scan results this week show it working, tumours in the abdomen reduced, the ones on the liver look fluidly, which happens before they, forget the word that was used but before the collapse I think.

    So hang on in , best wishes Trix

  • Hi trix - lovely news about your scan - that's given me some positivity for sure! Think the lobster look is down to the steroids and not the caelyx ( god I'm such a catch - excuse the pun )! Interesting what you said about twinges over your liver area - I've been getting that too due to this invading alien! Find it well scary but was reassured my liver function was normal when went for chemo! Good luck with your move Xxx

  • Thanks Maz, can't wait to move now, at the last stage which is always frustrating, waiting to exchange and get the moving date.

    My liver function is all ok too but as I have some tumours there, I tell myself it's the drug working and it does seem to have a pattern, usually about day 9/10.

    Good luck to you too. Trix

  • Hiya

    I'm very similar to you, not a lot of side effects but 2 weeks after the treatment I suffer the 'gas effect'! Very burpy ( sorry) and lots of indegestion and pain when swallowing. Apart from gaviscon (my new best friend) what else do you use?

    Mine disappears again a couple of days before the next treatment. I'm just about to have my 6th carbo/Caelyx, but poss going to stay on it for a few months more ( if I can tolerate it)

    Dawn xx

  • Hi Dawn,

    with a hiatus hernia gas and burping has always been a problem for me over the years but now permanently on Pantoprazole 20mg for some years and it suits me very well.

    Have to be carefully about what I use when on chemo, but peppermint tea or a capsule is good.

    I did have a few bad days and took activated charcoal that helped as it absorbs gas, and good old milk of Magnesia liquid, is very good if you have real discomfort in the chest, also good for the bowels so just have to not take too much.

    Re my liver twinges, my bloods are very good , so I tell myself it's the drug working on the tumours there.

    Best wishes to you


  • Hi Maz. "The Blush" only lasted one day for me - always the day that followed the caelyx infusion. Best of luck. Pauline

  • Hi Maz

    i'm about to have my 6th lot of caelyx/ carbo. It hasn't been too bad (its my 6th line chemo in 11 years so have tried the rest!) I was very sick the first time but doctor gave me different anti-emetics and lowered the dose and and although I usually feel sick for a few days its manageable. I've used the udder cream too and my hands and feet are OK but I do get very tingly feet and legs for a week or so after treatment. It has brought my CA125 down pretty well although had a long delay due to low white cells and CA125 gone up a bit. I'm just looking forward to finishing now and getting away somewhere warm for a while. Good luck with your treatment

    all the best

    Francesca x

  • Hi francesca - yep I'm a bit queasy but not too bad. I have been getting some tingling in my feet but slapping the cream on!

    6th line treatment in 11 yrs - wow! What a strong and inspirational lot we are !:-D xx

  • Hi maz, I did laugh at the reference to your husbands snoring and can fully empathise with you in that regard. I found going through firstbnline that it took me a long time to get to sleep at night and my husband would be snoring within minutes I f closing hiis eyes. Somehow his snoring seemed really loud in those dark hours. I was actually on line in the early hours ordering Christmas presents to try and take my mind off the fact that I couldn't sleep, I even went downstairs, made a hot drink and sat and watched old programmes on telly lol. I made a lovely friend on my second cycle, we exchanged contact details and our favourite TV one for communicating was around midnight, she had the same problem lol.

    Good luck vwith your treatment. Ann x

  • Haha Ann - I've often wondered why men have this unique ability to drop off within 2 minutes of lying down - beyond infuriating! Sleeping has never been a strong point for me so am on a highway to insomnia central now!

    Always follow your posts so fingers crossed for your scan in Sept Xxx

  • Thank you. xo

  • Hi. I just started Caelyx last week. I have one treatment each month for six months. prior to this I was on carboplatin and paclitaxel and my CA125 went down to 300. Was on tablets for a month and after that my CA125 raised to 2700.Thats why I am now on Caelyx. Hope this works. Feeling ok. A bit teary sometimes and slight lack of energy but no vomiting or sores etc. I guess I am lucky. Will wait till my next treatment to see if the CA has gone down. Good luck to you too. Maria XX

  • Hi Maria and thankyou for your reply - seems that caelyx makes us all feel a bit crap one way or another! I'm on same - monthly for 6 cycles :-(:-(.

    Have been told is a slow acting drug that doesn't impact on ca125 for 2 to 3 cycles - in fact can increase initially! Scary! Don't want to know mine - can't change it so too stressful! Just wondered if you had been told the same? ? Xx xx

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