Caelyx treatment after platinum based chemo my cancer resisted.

[steff4nie]

Hi is anyone on Caelyx? I've suffered just about every side effect and my appetite is non existent. I'm 3 weeks in first treatment. Any coping advice would be great..thank you.

[Lyndy]

I haven’t had that one steff4nie but I am sure there are people on here who have. Don’t forget the Ovacome helpline can also help you collect your thoughts before speaking to your team. I hope it eases off for you soon xx

[steff4nie in reply to Lyndy]

Thank you Lyndy. I'm so pleased I found this site. I see my consultant next week and have lots to discuss xx

[fendweller]

Hi , I'm on Carboplatin and caeleyx ,had five cycles my sixth is next Tuesday, I've struggled on it , weakness , fatigue ,the worst sore mouth and ulcers , still haven't cleared from last cycle ,I'm about to phone the chemo suite to ask for a reduction for my sixth , I've only started to feel better in the week before my next infusion , I've had to push myself to go out for short walks to get the strength back in my legs .On a better note my ca125 came down from 155 to 18 after three cycles,and scan showed a reduction in the cancer, so I'm glad I stuck it out. Ring your chemo helpline and ask for advice , maybe your bloods aren't recovering or you may need a reduced dose. I know it's really tough , I hope you get some help and feel better soon .Cheryl x

[steff4nie in reply to fendweller]

Thanks for your reply Cheryl and sorry you've struggled through this too, but good news after 3 cycles it reduced the cancer...fab news and hearing you are soon to be on your sixth cycle...well done..is this your final cycle..I've called my chemo team but they just say its side effects as it's cycle 1. No one has checked my levels but like you...the fatigue, weakness, appetite loss, dry mouth no saliva to even get excited about foods has caused me to stress and has probably added to my weakness and legs feeling like lead.. thank you again for your reply and maybe I do need a reduced dose as caelyx on its own has knocked me for six and like you still feel rubbish in the 3rd week and due cycle 2 next week. Keep strong xx

[fendweller in reply to steff4nie]

We sound pretty much the same , I didn't get the mouth ulcers until cycle four but did get a dry mouth , I have a litre bottle of water and a glass , Isip water constantly , usually have three litres a day , I also tried a spray which I got from the pharmacy and chewing gum ,which all helped the dry mouth ,for my lips I have ,O Keefs lip repair , again from pharmacy . Lack of movement definitely makes my legs worse , when I'm not up to going out I try to do a hundred steps around the house , several times a day . I hope your next cycle is easier for you.Cheryl x

[steff4nie in reply to fendweller]

Hi Cheryl, thanks! Yes I'm sipping water and chewing gum too. My GP mentioned salavix pastels..waiting for them to be delivered so will let you know if they help. Im still trying to work from home, it's challenging but the only good distraction I've got so will keep going best i can. That's a good idea to get steps in around the house, because I feel ok sat or laid down easily fall into the trap of not moving enough..yes will make sure I do this. Thank you not looking forward to next cycle at all, but thanks X

[fendweller in reply to steff4nie]

I'm not looking forward to mine either . Sounds like you're doing everything you can to help , hope you find it easier next time .Cheryl x

[Hidden]

Hello I’m on Caelyx & carboplatin after recurring 5 months post- frontline. I’ve found it pretty easy to tolerate compared to taxol/carbo. The nausea & tiredness have been bad for me on days 5-7 but after that things are ok. I drink ginger concentrate (no sugars) in warm or cold water throughout this time to stop the nausea. It helps hugely. I think it’s called Biona Ginger Pressed juice. Also eat plain rice with steamed veg (broccoli or some greens) & soya sauce if you can’t keep other food down.

Difflam mouthwash 1 or 2 times a day is very good for preventing mouth sores & ulcers.

[steff4nie in reply to Hidden]

Thanks so much for your reply with some really helpful advice which I will certainly try. It's great that you have found these foods that have worked for you and mouthwash too which I will talk to my team about as my lips are like tissue paper. Its uplifting to read you are coping well with this and does give me hope. Keep strong xx

[Hidden in reply to steff4nie]

Thank you! I’m sorry you’ve been suffering. I hope it gets easier for you & you get good results!

[BeliGolub]

Hi. I have had two of Caelyx (4 more to go, I am having it every four weeks). The first time it was OK, the second time, which was two weeks ago, is much worse. I still feel side effects and some if them appeared quite a few days after the Chemo - my throat is burning if I drink something even slightly warm and it is hard to swallow (one minute it's OK and then it's like a spasm). Tiredness . Body, as if, has been shaking inside. It's on and off; and not awfully terrible but it definitely is very exhausting. I am not sure if to ask for reduction. Also on the day of the chemo (the 2nd one) we noticed my face was a very strange colour - kind of greyish-yellowish. I wonder if time (duration) of the infusion makes any difference - they reduced it to one hour the second time. The first time it was an hour and a half.

[steff4nie]

Oh I'm so sorry this sounds horrendous for you. The side effects are definitely very harsh on this treatment and tough for the body and mind to get over and that's been my main struggle too. Week 3 and still feeling rubbish is upsetting. Maybe a reduction is the chat we both need with our consultants. Im still not sure my cycle 2 will go ahead next week as i do think my levels are not right but the blood tests prior to treatment will give the answer. Thank you for sharing your experience of caelyx and really hope it gets a easier each day for you. Take care xx

[Ruebacelle]

Was on it side effects ok but had spots on arms and belly rough hands. It didn't work so we did taxol which did.

[steff4nie in reply to Ruebacelle]

Hi, thanks for your message. It's good to know you have a treatment that has worked for you. Good luck and hope it continues.

[drdu]

I was on Caelyx over 7 years ago. Frankly it was hellish but it worked!I had it along with cisplatin, as I had had taxol before twice along with a platin and they said I needed a change from taxol.

All best wishes.

Eileen xx

[steff4nie in reply to drdu]

Hi Eileen that's encouraging to read that it worked for you...thank you for sharing that. The side effects have been different each day and unbearable somedays, unable to walk, feeling weak, muscle spasms, fatigue and no appetite to name a few...just feel alone with it as no one sees or understands the pain. Good luck to you and lets all stay strong xx

[drdu in reply to steff4nie]

I am so sorry. Maybe they could cut the dose back slightly next time. All very best wishes.

Love,

Eileen x

[Ulaparkour]

Hi steff,

I’ve been on caelyx for over a year and it’s been good to me in general.

It’s kept my cancer in check.

However, after the first couple of cycles I got the most horrendous bout of mouthsores.

After which, the dose was reduced by 25% and I started using an ice device cooling system for my mouth.

Called “ice cold mouthpiece” or chemo mouth piece.

It’s awkward to use but I haven’t suffered mouthsores since.

Also when I started caelyx, it was in combo with Avastin, but over time I stopped tolerating the Avastin and had bp and kidney issues.

My oncologist calls caelyx the little engine that could. Maybe slow to start but keeps going and going.

It’s been a good maintenance drug for me. I was diagnosed with low grade serous oc in may 2019, recurred in summer 2020.

Take good care and best of luck teal sister!

[steff4nie in reply to Ulaparkour]

Hi thanks for your words and advice. I slowly went downhill with weakness and breathlessness to find I'm currently in hospital being treated for a pulmonary embolism and infection. 2nd cycle of chemo on hold. Body has been through the mill this last month. Keeping strong x

[Ulaparkour in reply to steff4nie]

I’m sorry you are going through this Stephanie. My heart is with you.