Caelyx: Hi All. I am just about to start Carly's... - My Ovacome

My Ovacome

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Caelyx

27-359
27-359

Hi All.

I am just about to start Carly's, and am asking for recommendations for things you found helpful. I have ordered some Cowgoo moisturiser and am going to get some Difflam mouthwash. Is there anything else that would give me the reassurance that I have my full arsenal at the ready?

29 Replies
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Caelyx not Carly's

MooGoo not Cowgoo!!!

No but Ill be interested in replies as I am starting it tomorrow, and bricking it !

27-359
27-359 in reply to rosebine

I have just read through your previous posts and see that you are being treated at Maidstone.....so am I!

I also live alone, so perhaps we will meet in the oncology suite. If you would like to chat, or meet up, pm me.We could support each other and discuss strategies.

Jenny

Stay in contact, we can compare notes!

Jenny

I’m coming to the end of this regime for 1st recurrence and have had no dry hands or feet but exhaustion has been off the scale. It’s worked though as I’ve had a complete response. Good luck xxx

27-359
27-359 in reply to MH500

So pleased to hear that you have done well on this regime. I hope I do as well.

Jenny

BellmoreBelle
BellmoreBelle in reply to 27-359

I'm the same. No issues with hands/feet or mouth, but very fatigued. I finished 7 weeks ago, and have had a complete response too. You do lose some hair but nobody but me has really noticed, and it's growing back in now.

Best of luck, I found it quite tolerable in the grand scheme of things.

27-359
27-359 in reply to BellmoreBelle

Wonderful news. My hair is already thin, but a complete response would be a small price to pay.

Jenny

BellmoreBelle
BellmoreBelle in reply to 27-359

Good luck! x

I had Caelyx/Carbo for my first re occurrence. I found it okay but Carbo/taxol was more manageable for me the first time round.I asked whether there would be any hair loss and was advised to wear a cold cap, which I did.Hair has been good.

Ann

27-359
27-359 in reply to mrstadpole

And I have been told that I won't lose my hair this time!!! Whatever happens, I shall just have to get on with it. Thanks for the warning.

Jenny

Hi, I haven't been on Caelyx but Taxol and Carbo have similar effects and my skin was dry before all this. I've been using Aqueous Cream for moisturisation, you can also wash in it I wash my head in it every morning because it has been sore from hair loss. It's £2.99 from Superdrug for 500grams buy 1 get 1 half price (best place to get it). That's my red hot tip for you. Take care and I hope all goes well. Sue xx

27-359
27-359 in reply to SUE7777

Hi. I have already had Carbo/Taxol and didn't suffer from dry skin at all! It just goes to show that we all react differently to these drugs.

Jenny

SUE7777
SUE7777 in reply to 27-359

Absolutely. All the best. Sue xx

I didn’t have skin problems on caelyx, but I did suffer with gastric reflux and constipation. I would ask the chemo unit for meds for both, just in case. Once I had the right meds I found caelyx relatively easy, but I never want to repeat the constipation experience! I got into the routine of using laxido on the day of chemo and a couple of days after - same with reflux meds. All good 👍🏼

Thanks for the recommendations. I will be ready!

Jenny

Hi Jenny

I was similar to others, skin was OK, head hair loss didn't happen but did lose some body hair (yay!). And fatigue was hardcore, but just gave into it on the few days that were really bad - got up as usual, short nap mid morning and then 2hours after lunch. Seemed to help and gave me some functionality as well.

Wishing you all the best

Siobhan x

27-359
27-359 in reply to Wonnie

Yes, I'm prepared to go with it, and will rest as necessary. Thanks for the advice.

Jenny

Its pretty easy. No hot water on hands. Spf50 when you go out...

27-359
27-359 in reply to Ruebacelle

I can do that. Thankyou.

Jenny

rosebine
rosebine in reply to 27-359

Hi, I have been to chemo today. first lot of this one. The list of side effects they have given me comes to 32 ! i know you are unlikely to get all of them. Hoe I dont get fatigue need to be able get out an d walk the dogs. Spaniel is manic without exercise and I dont have a garden to speak of. Dont know how to PM new to this site!

Hi there. Due to get my fifth Caelyx /carbo tomorrow. I would say it has been relatively straightforward. Constipation an issue and like someone else on here I would not like to repeat this. Go to bed every night with a bowl of prunes which seems to do the trick. A couple of days after treatment I have really rosy cheeks which soon calm down. Have had no nausea although I do take the meds for the three days as suggested. Slight skin peeling but only on one hand. Hair thinning but hasn’t fallen out. I hope you get on ok. Take care

Hi. Yes, constipation is really uncomfortable so I will definitely stock up with the prunes. Glad to hear that the other side effects are manageable. Looks like you are coming to the end of treatment, so hope it is working for you.

Jenny

Hi

Due to have 3rd Caelyx tomorrow. Gel Clair is brilliant for any mouth soreness to use along side Difflam.

Fourth line of treatmentfor me. last three carboplatin which stopped working.

Main problems with caelyx seem to be constipation. Trying really hard to overcome it but just had a thirteen night stay in hospital trying to sort it!

Hopefully on top of it now and everything can continue tomorrow.

Good Luck with the new regime.

Best wishes

Janet

Thanks for that. I have made a note of the Gel Clair incase I need it.

Jenny

Hi. I have just had my second infusion of carbo caelyx for first recurrence. I agree with others. Fatigue is off the scale. A little constipation but early days yet but have to be careful because I have a stoma. I have not experienced any side effects with skin or mouth yet in head or body🤞but do be careful with your skin. No very hot water and don't rub too hard when drying. Use gloves for washing up. Also caelyx may thin hair a little. Again don't vigorously rub dry and don't overstress hair with hair dryer. Other than the fatigue which isn't too bad while I am on steroids and occasional trouble concentrsting, I am coping fairly well🤞 A bit short of breath in exertion but that may be something else - getting it checked out. Good luck with the treatment.🍀 Jackie x

27-359
27-359 in reply to Mumsie13

Thanks for the advice, and I am pleased that so far you are finding the regime manageable.

Jenny

Ive had to make myself a notice and pin up in the kitchen re not using hot water! Also various other things I should be doing like drinking 3 litres of water and moisturising I suffered quite badly with constipation last lot of chemo. have Movicol or similar and Dulcolax,

Started yesterday got headache this morning, I dont usually suffer with these

Hope fatigue doesnt set i n really hard when you live on your own with no family to help out

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