Caeylx rash

[Jessica-DianeB]

Anyone experienced this very painful rash on caeylx? I was wondering how long it takes to clear once treatment is finished. I’m half way through xxx

[Lily-Anne]

How long have you had that?

LA

[Jessica-DianeB in reply to Lily-Anne]

2 weeks ish xx

[Lily-Anne in reply to Jessica-DianeB]

I really think you should see GP at least and also the oncology nurses.

LA xx

[Jessica-DianeB in reply to Lily-Anne]

I saw GP. No joy. So waited until clinic this week, it’s from the caeylx interfering with sweat glands xx

[Lily-Anne in reply to Jessica-DianeB]

Are they going to tweak dose? I went into the Caelyx website as it’s one of the drugs in a trial that’s on my list. Skin problems feature a lot and it lists options to tackle it. It was so interesting I forgot what I was looking for lol

Glad you’ve found resolve

Xx

[Jessica-DianeB in reply to Lily-Anne]

Yes they’ve halved the next dose. That’s interesting. I know it’s wrong but I didn’t want to say I couldn’t cope with the pain as was scared they would take me off the drug. So played it down. However the cream Derma cool does take the heat out of it xx

When do you start your trail screening? Xx

[Lily-Anne in reply to Jessica-DianeB]

Don’t forget it’s a poison and we all have different tolerance levels. If you develop symptoms that threaten your wellbeing it kind of defeats the object in my eyes

Off to Addenbrookes on Thursday

Please take special care of yourself

LA xx

[angeladale]

Golly , that looks nasty . To be honest , my caelyx had to be stopped because of rash all over buttocks !! Horrid reaction and Prof so worried called a halt . It depends on type of rash though , but I would get that looked at as soon as possible . I was put on cisplatin instead ....that was 2015 ...poor you , don't leave it , please xxx

[Seasun36-uk]

Hi. Yes do get someone to look at your rash asap - we have a 24/7 chemo helpline to ring with queries - do you have this facility? Linda xx

[lorraine71-Australia]

Hi Jessica, I had a bad rush from Caelyx my oncologist gave me a script for steroid cream and that cleared it up I manage the 6 treatment with good results.

Do see your OC as soon as possible or go to your GP I'm sure they can help .

Good luck with the Caelyx treatment I hope you get good results.

Take care Lorraine xx

[Jessica-DianeB in reply to lorraine71-Australia]

Interesting. Not offered steroid cream. Just something to ease pain. Will ask at next review. Thank you xx

[Jessica-DianeB]

I’ve seen onco this week, he’s halved next dose and the dermatologist who happened to be sat in prescribed derma cool. Which is taking the heat out.

Unfortunately I’m platinum resistant and BRCA negative so I really need to complete the full treatment as options are so limited in my case.

Just hoping someone may have had this and it’s successfully cleared post therapy 🙏

[SuSue]

Hi jessica is that under your arm. I had a rash whilst on Caelyx which went under my arm and down my side. It too was very painful and dry I was only prescribed aveeno which did help with the dryness but not the soreness. The good news is I finished treatment in december and it had started to go before that and now has completely gone. Good luck xx

[Jessica-DianeB in reply to SuSue]

Ah that’s so good to hear. It looks almost scarred currently, can’t imagine it healing! Yes underarms, sides, tummy and groin.

I have some cream to cool it. But taking pain relief. No pain no gain then hopefully! Xxx

[Supergran38]

Ouch! That looks sore. Hope you get sorted ASAP.

Please keep us updated. Xxxx

[Yoshbosh]

Ouch Jess! That’s nasty looking. I hope it calms down soon xxx

[Jessica-DianeB]

Thank you Vicki, thinking about you for next week and impending results xxx

[Hidden]

Hello. I can't tell from the pic if your rash is similar to the one I had whilst on carbo/caelyx, so I'll describe what happened. As you see I live in Australia. One morning, after a warm night, I woke & as I moved my arms, my skin had fused together & it ripped my skin apart all down my side, beginning under my arms. It was of course, very sore. Because the skin was raw, I thought I'd better stop using deodorants. However, when I saw my onc, he said I should've continued as that would coat the skin, thereby preventing the caelyx from coming to the skin's surface. It took a while to go but it did go. Caelyx isn't the easiest drug to live with but it put me into a good remission for which I am extremely grateful - I'd do it all again. Good luck. Pauline

[Jessica-DianeB in reply to Hidden]

Thank you Pauline. It sound similar. I’m really pleased you responded so well to the drug. It makes it all worth it doesn’t it xxx

[MissEd]

My mum had the same rash, prescribed steroid cream and it's gone now. Cut dose down by 15% (as she had hand and feet issues too) and seems ok now a fortnight after her session. Hope it improves for you x