Caelyx Side Effects

[Ruby49]

Hi Ladies,

Can anyone recommend a cream or other remedy to alleviate the pain from sore hands and feet caused by Caelyx. The other side effects are awful but I'm finding the hands and feet pain the worst.

Hope you can help.

[Elaine13]

Hello Ruby,

I have just had my third session of Caelyx and both my feet and hands are very dry and the skin is peeling. I have been using Udderley cream which has been recommended and it seems to help with the dryness. Aveeno cream has been mentioned by my CNS and I think one lady on here thought good old Sudocrem was as good as anything and cheaper.

However, although my hands and feet are sore I would not say they are painful (yet) and it may be that you need a topical painkiller-the creams only help with dryness and are soothing. I would speak with your CNS to see if they can prescribe something for you.

Avoiding getting the hands and feet hot is really important and cooling them with ice packs is supposed to help although I haven't done this yet. Just touching a hot dish can leave a nasty red weal so I am trying to be careful.

I do hope you find something to help. How far are you along with the treatment?

Wishing you all the best,

Elaine x

[Susan3 in reply to Elaine13]

I have not had this drug( yet!) but would you consider holding ice packs while drug going in?. Im not sure if this would help as your symptom seems different to neuropathy ..I need my hands cause of my work so I held ice packs( the packets not actual ice!) for all of my frontline treatment . Ice stops drug going to your hsnds.. Worked great as I had no neuropathy apart from first day when I didn't include thumbs in the packs! Sorry just thinking it is a different problem you are having. Hope you get done better advice than mine!

[Ruby49 in reply to Susan3]

Thanks - anything is worth a try! I had the cold cap on cycle one so I'm used to freezing extremities! It just gets me down as my mouth is badly ulcerated too. Happy to put up with it if it works x

[Ruby49 in reply to Elaine13]

Thanks so much Elaine. I will definitely try the creams.

This is my fourth line treatment and I've been having chemo for two years now - Carbo and Taxol, Carbo and Gemcitabine, Avastin and now three cycles of Carbo and Caelyx - the worst yet. My CA125 has yet to decrease but apparently it can take four cycles to see an improvement. It will all be worth it if it does come down, even by a few points.

[JanePW1965 in reply to Ruby49]

Hello Ruby. My Mum had Caelyx alone for 2nd line chemo. (She had Carbo/Taxol first time around). After the third dose her hands and feet became unbearably painful. She was using cows' udder cream and Aveeno, taking anti-histamines, etc. She went back to see the Onc and he lowered the dose by 20% and things improved dramatically. She had her final (6th) Caelyx on 21 July this year then was on watch and wait for three months. When she went back I was fearing the worst but the tumours had shrunk a little and stayed put and her CA125 had gone down from around 250 to 159. So, that was pretty positive. Good luck with your treatment. Jane

[Ruby49 in reply to JanePW1965]

Thanks Jane. That's exactly the same pattern as my treatment is following and I'm absolutely wiped out for a week which had made me think the Caelyx dosage could be too high. You've prompted me to call my onc today to suggest a treatment review.

Many thanks for your advice.

Ruby x

[JanePW1965 in reply to Ruby49]

Hi Ruby. Someone on Ovacome said to me that they start with the higher dose with Caelyx and adjust as needed. I'm amazed that it's still carried on working for so long after the last chemo. I thought Mum's CA125 would have rocketed during her 3 month 'watch and wait'. Mum was really tired with the Caelyx too. I think chemo does make you very tired doesn't it. Mum always feels tired though but she is 79! She's lucky in that she's able to have an afternoon nap. Hope things improve on the Caelyx. You're having Carbo too aren't you? Not sure how they determine what to give to people. Well, I hope things get sorted out for you. I'll watch out for your updates. I've found chatting to people on Ovacome so useful and informative whilst Mum's been going through all her treatment. Jane x

[Ruby49 in reply to JanePW1965]

Hi Jane,

Following your post I rang the Christie Hotline and told them about my symptoms. They are going to reduce the dosage which they say is pretty common so a great result all round I think!

Thanks so much,

Ruby x

[JanePW1965 in reply to Ruby49]

That's good news Ruby. It's so useful chatting with people on Ovacome!! Jane x

[vonny1960]

Hi Ruby on on my 3rd session of carbo/ caelyx I have been ok with skin so far but have had mouth problems, but you don't have to suffer with it my onc prescribed something for mouth thrush and strong mouthwash and that has cleared it up hope you get the side effects sorted best wishes Yvonne .

[Ruby49 in reply to vonny1960]

Thanks Yvonne. I'll get some prescribed at my next session.

Ruby x

[Julie40]

I'm on Carbo caleyx and haven't experienced the redness or dryness but no doubt it's on it's way. I bought udderly cream from Amazon on a recommendation. I too am absolutely exhausted for at least a week. I've had 2 cycles and it's tough going but hoping and praying that it is working.

Hope you get some ease soon xo

[Ruby49 in reply to Julie40]

Same here. I wish you well x