Cisplatin and Caelyx for recurrence

Hi all you wonderful lot,

Well after endless waiting around as always finally saw my Oncologist and she wants me to have Cisplatin/slow release Caelyx every 4 weeks, anyone else had this? Any advice on side effects? I am feeling pretty tired already from pain in liver and general stress but I will start next week, better not to have too much time to dwell I think!

Got a bloody parking ticket from hospital to add insult to injury. Could not find any official bays so parked very sensibly, not blocking anyone and not on any yellow lines, paid for ticket and still got a fine. Onesrly,new dont need that as well!!

Lots of love,

Claire xxx

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  • Oh Claire - those hospital parking areas are designed to catch us all out. I would challenge it if you've still kept your ticket...although wiser people than me would say, just pay it and stop stressing!

    On your main point: I'm currently on 4 weekly Carboplatin/Caelyx for 1st recurrence (so it's not an identical regime to yours). I was v nervous when I started as I'd heard that Caelyx was tough, although I'd had Carboplatin as part of my initial treatment combo and been OK on that (apart from the usual fatigue, low bloods, constipation etc etc).

    It's not been too bad for me generally, although I managed to catch a virus in Dec when my immunity was its lowest and was hospitalised until they got on top of it. I've been keeping religiously to the prescribed steroid and anti-sickness tablets each time. I also am absolutely focused on my bowels and prunes, apricots, orange juice, and gallons of water are my mantra now! I've just had my 3rd of 6 treatments yesterday, so am half way through.

    I hope that this helps a little - and just let that parking ticket stress disappear. All the best.

    Caroline x

  • Hi Caroline,

    That helps enormously, I think it's fear of the unknown that's worst so you have calmed me down,mi kept reading terrible things about your skin on hands and feet and that you shouldn't walk for first 5 days after Caelyx? Anyhow,I got through last two, so I'll do it again!

    Best Wishes,

    Claire. Xxx

  • Yes - I'm v aware of potential issues on hands/feet and also mouth ulcers, but touch wood, have been ok so far on this too. I was given various emollient creams for skin and bicarb of soda for a mouthwash just in case. We'll get through this together, Claire! x

  • That's the spirit! Yes we shall!

    Xxxx

  • Hi Claire

    Challenge that parking ticket. I got one a few weeks ago, after clinic running late.

    Nursing staff backed me up, and I was exempted. As if we didn't have enough to worry about !

    Sorry I can't offer any advice on your treatment, but wish you all the best

    Judy xx

  • Thanks Judy,

    Have left husband to sort it as he loves a fight!

    Claire xxx

  • Hi Clare,

    I have finished 6 months on caelyx, yes some of the side effect are not good, but I still managed to go to my casual job while having it.

    I think I had most of the side effect, first a itch and blisters under my arms but steroid before each chemo fix both.

    My toe nails started to come off and it also effected my hands .

    This all sound bad but I did manage it as I said.

    Plenty of moisturizer on hands and feet help, also keep them as cool as possible.

    Now the good side of caelyx it's only 1 a month not every week which is great and it did bring my 125 down, that was my 3rd line chemo.

    I'm on a break at the moment it's been 8 weeks and I do wonder what the beast is up to.

    When I go back it could be taxtol for12 weeks but also could be more caelyx.

    I hope it is caelyx.

    Remember we are all different and some ladies manage quite well plus it's sound like you are going ok

    I've been chemo free for 8 weeks and all the side effect are gone.

    I hope I have help you with your stress about caelyx, you will fight this and come out the winner.

    Cheers Lorraine

  • Thank you Lorraine, it always helps to know that other people have managed to still get on with life through all this rubbish! It's fear of the unknown that's the worst!!

    Best Wishes,

    Clairexx

  • Ah for heavens sake a parking ticket in a hospital when you display the ticket. I remember having my pre radiology appointment and parked in the car park. I had a ticket and went to pay and the machine demanded a huge amount. I buzzed through to security explaining that rt patients get free parking anyhow and I shouldnt have to pay. He left me off and told me where the designated free parking for rt was for future visits. To answer your question, I havent had this treatment as yet but I hope it will go okay for you.

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