I started caelyx as 3rd line treatment 2 weeks ago for PPC.I only had 6 months in between treatments. This time I have had 2 paracentesis prior to chemo and one a week ago and drained 9 litres. I wondered if anyone else on caelyx and how it affects you. I feel terrible most of the time, have fluid in left leg and foot they say is due to loosing so much protein,low blood pressure and a very painful external haemorrhoid and itch.
I thought I would be beginning to feel better not worse and it seems such a long time to the next chemo on 3rd October and I worry it is not going to work and will keep spreading. Instead of feeling positive I feel I must be getting towards the end of the road. I know I have to give it a chance to work but I didn't feel so bad last two times.
Sorry to be such a moan. Sue x
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I am on Caelyx, due 2nd chemo in a few days 25/9. I questioned why 4 weekly and ONC told me it stays in the body longer and carries on working longer than other chemos. Not had much in the way of side effects, feel bit tired but think that's a general side effects of any chemo. This is my firstline treatment but have read several posts of ladies having Caelyx and have searched the internet and is a tried and tested chemo for recurrent OC/PPC so hang on in there. I would advise you ring your specialist nurse or ask to see the ONC for some reassurance.
Firstly Sue you are not a moan. These are legitimate things happening to you and your body and this is the site to share it on. Plenty of us feel like this at different times. I am not having your kind of treatment but from reading about others experiences here Caelyx sure packs a punch. Hang on in there. We are here for you.
Thank you for taking time to reply and your support. I do feel better today and walked more. Everyone is so kind and also going through such a lot. Take care Sue x
If you can't have a moan on this site, where can you?! You are stating facts anyway, so firstly, please don't be so hard on yourself.
I too have PPC and am on Caelyx. I was diagnosed April'12 then taxol/carb, debunk and chemo again followed by 12 lovely clear months. Returned November '13 so carbo only to which I reacted to after first one. Then cisplatin - reaction again after 1and a bit sessions. I had a few clear months but had to start caelyx 1st of August. I had the horrid ascites each time too. So far so good for me, no side effects to keep me in for very long. I do find I feel a bit morose around the second week and tire more easily but I can cope with that. I walk loads and try to eat well, although steroids make me crave carbs so much! Our caelyx has to be made up on the day of treatment as it is extremely expensive but I believe it can have great results, it just takes longer to kick in. Ascites and draining, especially your 9litres, takes it toll on the body and you are bound to feel lousy. I think that having chemo once a month gives me a good two weeks of feeling pretty good and hopefully that will be the same for you.......and very soon!
thankyou for taking time to reply, it's so helpful to hear your thoughts and experiences and I do feel a good bit better today and managed to walk more. Take care Sue x
HI Sue, sorry to hear that you are down, I know side effects from any chemo are horrendous although havent had your one yet. I do have piles and use the creams available over the counter but there are stronger ones available on prescription, In the meantime, try and walk around a bit even in the house, have plenty of fluids and try not to get constipated or if you do, use whatever laxative is approved by your team. Dont get down hearted, I have read that caelyx can be touch on the body but people get through it and get remission. If you are having a lot of difficulties, I would contact chemo unit tomorrow when they open. Wishing you the best
Thankyou for your good advice and reassurance. I feel a bit better today and did walk out further today which helped. Hopefully I can keep it up now until the next one. All the best to you. Sue x
Hi Sue. No need to apologise for having a moan, we understand. I haven't had caelyx but if I have to have chemo before Christmas my Onc has said that's the one I will get. Hope to get through Christmas and New Year though before any treatment needed. You've been through a lot and its no wonder you are a little down but I'm sure you will pick up again soon. Don't be too hard on yourself. I found that using ducolax helped keep stools soft and no problems with piles (know what its like to suffer with them). Keep positive. #Warriors. Ann xo
Thankyou for your advice and support. Do feel a bit better today and did more walking. Will keep my fingers crossed for you To get longer remission. Go and enjoy yourself. Sue x
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