caelyx side effects: Hello everyone, Any of you... - My Ovacome

My Ovacome

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caelyx side effects

PlantPower profile image
18 Replies

Hello everyone,

Any of you lovely ladies had side effects from caelyx? I am due to begin my 3rd line of chemo mid October which will be caelyx and wondered how you got on with it as i have heard it's a tough one to take.

xxx

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PlantPower profile image
PlantPower
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18 Replies

Hi,

I'm finding Caelyx not so bad, but I'm not sure if I have received the full 100% as it's my first session of 6 and into my first 24 days

Do if you know are we given a lower amount of this drug to slowly introduce it to make any effects lower?

Be well..

Rita44

PlantPower profile image
PlantPower in reply to

Thank you for the reply, Rita. I am pleased that so far you are doing well on caelyx. It seems that we shall soon both be on it and hopefully can exchange how we are doing along the journey. I have no idea if they start us on a lower dose. I wouldn't have thought so, but I hope you continue to do well. much love, Rosie. xxxx

I had caelyx with carboplatin. Infusions were once every 4 weeks so plenty of recovery time. I was expecting to get the hot red foot thing but perhaps because I started moisturising my feet with 10% urea Udderly Smooth cream before treatment and kept it up twice daily throughout, it never got that bad. I also avoided hot showers and cooled my feet when they felt hot. I found it a tolerable regimen overall.

PlantPower profile image
PlantPower

Thank you for your reply. I was surprised to hear that it might be every 4 weeks instead of three. Nice surprise as more time to recover and less hosp trips. Thank you so much for the tip, I am going to order that cream now in readiness for mid October when I start caelyx. I am so glad you are coping well with the chemo and best wishes for the rest of your treatment. xxxx

meadowgirl profile image
meadowgirl

Hi, I am starting second line Carbo/Caelyx on Thursday. I had Carbo/Taxol first time round. I will let you know how it goes. Avastin and Olaparib just stopped working for me and I am enjoying two weeks with no drugs and I feel so well and enjoying life, despite being diagnosed with a pleural effusion 😏

PlantPower profile image
PlantPower in reply to meadowgirl

Sorry for the late reply. Unfortunately, I developed a bowel obstruction and ended up having emergency surgery and now have a stoma. My caelyx did not go ahead.I am hoping to get calyx soon and see the oncologist next week. I hope you are doing well on carbo/caelyx. Love and best wishes, xxxxx

SopSinger profile image
SopSinger

I've never had Caelyx myself but know (from this group and others) that a lot of ladies have skin problems, especially on their hands and feet. Keep them well moisturised and don't expose them to too much sun (that's not likely to be a problem at this time of year!).

PlantPower profile image
PlantPower in reply to SopSinger

Thank you to everyone who has answered my caelyx question and also given me plenty of advice. A sudden large bowel obstruction got in the way of my appointed chemo. I pray I can restart soon . Much love to all. Xxxxxxx

meadowgirl profile image
meadowgirl in reply to PlantPower

So sorry to hear about your bowel obstruction and need for stoma. I hope you have adapted ok. I went for my second Caelyx treatment yesterday and couldn’t have it because the pharmacy was out of stock, so postponed for 6 days to next Wednesday. I don’t know if this is a local, or national shortage. I would be interested to hear from others. I hope you get yours started soon xxx

PlantPower profile image
PlantPower in reply to meadowgirl

I am shocked to hear that your caelyx was postponed due to out of stock. In my opinion that is incompetent having to make you wait another week.I hope you get your next treatment on Wednesday. I see the oncologist on Tuesday and pray that she thinks I am fine to resume chemo. I feel really well and am managing my stoma just fine. Good luck for Wednesday. Xxxxx

meadowgirl profile image
meadowgirl in reply to PlantPower

I hope you get your chemo approved on Tuesday. So glad to hear you are feeling well.

All the best. Suzie x

PlantPower profile image
PlantPower in reply to meadowgirl

Thanks, Suzie, I saw my oncologist yesterday and I have the go ahead for caelyx in 3 weeks. Might have to have a Pi cc line first.

I am thinking of you today and hoping you are getting your next caelyx.

Much love, Rosie xxxx

meadowgirl profile image
meadowgirl in reply to PlantPower

Hi Rosie

All the best for your treatment in 3 weeks, I’m so glad you had the go ahead. Unfortunately I have had my Caelyx/Carbo postponed as pharmacy don’t have the Caelyx, once again. I have asked around specialist sites and no one has heard of this happening elsewhere so doubt that this will happen to you! I have written to PALS locally to request an explanation and also to ensure that senior management are aware of this issue. Im sure yours will be fine. Sending love x

PlantPower profile image
PlantPower in reply to meadowgirl

I am so sorry and angry that this has happened to you again. After all, this is chemo we are talking about and not an aspirin. Good for you that you have voiced an opinion as you need an explanation at the very least. Yes, senior management need to know about this. There has to be many patients waiting for treatment with you. I hope you get caelyx ASAP. K MP. Xxxx

meadowgirl profile image
meadowgirl in reply to PlantPower

Hi Rosie

Little update, I got my Carbo/Caelyx today, 9 days late. I had a response from PALS which I think resulted in the pharmacist coming to visit me in the chemo suite. She apologised for the delay and assured me this will not happen next time. She said there is a national shortage, but when I spoke to Annie, nurse advisor on Ovacome, she said that no one else had reported it, so who knows. Best wishes for you and your upcoming treatment. Suzie xx

PlantPower profile image
PlantPower in reply to meadowgirl

Hi Suzie,

I am delighted to hear that you eventually got your caelyx..Good that you complained to PALS and got the results you wanted. It’s worrying that you were told there is a national shortage. I hope mine is not delayed further as it has already been postponed due to my abdominal surgery.

Anyway, how are you feeling after the first treatment? Please KMP if you can to how you are coping. Great news and best wishes for the following cycles. Much love, Rosie xxx

Doglover1410 profile image
Doglover1410

hi 👋 I’ve had it twice, once 6 sessions and this year 4 sessions.

I find it ok. Moisture your hands and feet, I’m not very good at that (think more Tom-boy than girly-girl!!) and my hands do suffer. They recover when I moisturise, but try and get it started now.

I didn’t need any anti sickness meds, in my oncologist’s words I’m ‘a chemo pro’! I’m not but I really hate the constipation that comes with them, so lots of water and fibre to keep things moving

It’s really ok (or at least it was for me!)

Good luck x

PlantPower profile image
PlantPower

Dear all - other half here - Sorry to say that chemo is off as she was admitted with obstruction Sunday. Awaiting op hopefully tomorrow. She has not had a chance to read any replies and likely won't for a while I'm guessing.

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