Caelyx: Need some advise, have just been to... - My Ovacome

My Ovacome

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Caelyx

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Need some advise, have just been to oncologist to be told cancer spots are growing again so need chemo, they've suggested Caelyx every 4 weeks for an hour, onc said it was more gentle on my body, side affects are mouth ulcers and sore hands and feet, looking for tips to get through this next chemo thank you

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9 Replies
Jo-Bo profile image
Jo-Bo

I am on it now. No sore feet hands or mouth yet. 3rd cycle starts on Monday. The first cycle was tough and I got Neutropenic, but they reduced the dose and the second cycles has been fine.

moominkat profile image
moominkat

Finished a 6 month course in May. I got the occasional mouth sore but they lasted half a day to a day. No peripheral neuropathy at the time but wonder if affected now as I seem to suffer more numbness and tingling episodes than with the last chemo regime I had, but again this doesn't last. It fixed my frozen shoulder, or coincidentally that vanished the day after I had my first dose! Alas that's starting up again. Nausea for which I took Metoclopramide (they didn't want me on Domperidone this time), it was vaguely effective but they were strict about the dosage. Steroids during the treatment meant hot red flushes on my face but they didn't last more than a day at the start of each treatment and as long as they passed by the end of the first two days I didn't feel the need to contact the cancer hotline about them. It is meant to be gentler on the patient but I did feel quite ill and weak on it and once the chemo was finished I had bouts of feeling under par which lasted a good 3 to 4 months after the chemo finished - which didn't surprise my oncologist. I feel much more normal now, although I am still exhausted if I do too much and can fall asleep at the drop of a hat for about 5 - 15 mins then wake up with a start! Oh and I went off certain foods - leeks, asparagus, peas and salmon as the taste matched the nasty sweet metallic taste I get with chemo. Luckily that's passed. So really, all the normal reactions to having chemo I guess.

Lost4Words profile image
Lost4Words

Hi, I had 3 Caelyx earlier this year and found the SE's quite bearable. Nausea and mouth sores were manageable with the tablets and soft toothbrush/mouthwash, they only seemed to last a couple of days. I did go off 'wet food' like soup/gravy so that was a bit of a bind. The main problem I had was sore hands and feet (Palmar Plantar Erythrodysesthesia) and I did have a couple of patches where the skin pigment went darker. Keep well hydrated and avoid extremes of temperature especially hot water. My Onc said 'no washing up' so I took him at his word! There always has to be benefits to treatment ;-) They treated the PPE with Aveeno cream and I'd recommend you get some if your skin starts to go dry, it it's fantastic and you only need a small amount. If PPE does start, avoid wearing closed in shoes/boots and try to wear soft open shoes/sandals to keep the feet cool and try to limit the amount of walking you do, this reduces the friction on the feet. I didn't get the fatigue whilst I was on Caelyx, in fact I decorated/cleaned a 3 bedroom house from top to bottom in one cycle and then I changed onto Topotecan after 3 so I don't know if it was that or the after effects of Caelyx but I have found my energy levels dropped. Of all the regimes I've had so far I did find Caelyx the most bearable but everyone is different. Hoping your SE's are little ones :-)

L4W

Celtic6648 profile image
Celtic6648

I had calyx second round no symptoms whatsoever , I'm now on Clemo 3 not liking this one as much , the only thing I think it's slow to work good luck

Celtic6648 profile image
Celtic6648

I don't take steroids as they make me aggressive don't feel myself , bloody murder sure it us Annie xx

Thank you ladies really appreciate all your tips, wishing you all well. I will let you know my experience when I start this round of chemo. Xx

janf profile image
janf

Hi KMAllan

Had first Carbo/Caelyx treatment on Monday for 10 months re occurrence.

I have to say physically it is not too bad but mentally it seems to have made me very weepy and emotional - I guess that could be because I was disappointed (to say the least) with it coming back. However after reading through some of the posts here I see that other ladies have had similar side effects so that gives me hope that I am not loosing the plot x

I have got all my creams in and mouthwash also a cool pad for my feet in bed, keep in touch and lets us know how you get on.

Just so thankful that this info is out here for us x

JPTjpt123 profile image
JPTjpt123

I have had one dose of Caelyx and suffered no ulcers or sore hands or feet. Everyone is different. My main feeling is no energy and loss of hunger. I could go all day and not want to eat at all so I force myself all during the day eating bits and pieces as I have been losing weight. Good luck with your dose. regards Maria x

Thanks Maria wishing you well X

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