Advice on Caelyex.

[Susie_50-s]

Advice

Have been told that I may have to go straight back into chemo after just finishing first line of 6 chemo sessions and a debunking due to cancer not shrinking/resolving itself..

New drug they may try is Caelyex. Can anybody shed any light on side effects please. I know everyone is different.

I have just agreed a phase back to work (been off 8 months) starting tomorrow (work in a school) and want to have some idea if I am still able to work in between treatments.

Any advice /info would be appreciated...sue

[Susie_50-s]

Debulking

[Ossett]

Hi I work in a school and I have been off work since April it's more because of infection from the children, I work in a primary school so the little darlings are always sneezing coughing or worse lol

[Susie_50-s in reply to Ossett]

That is a concern I agree.

[CallmeMum]

Hi lovely,

If you look on the search bar then type in Caelyx you’ll find lots of posts on Caelyx within the past 6 months or so xxx

[Susie_50-s in reply to CallmeMum]

Thank you

[Susie_50-s in reply to CallmeMum]

Thank you

[27-359 in reply to CallmeMum]

I know I am dense, but where is the search bar? I have been all over the page and can't find it. You will need to be very explicit in your explanation, eg just below X to the right of y. I am using a Hudl, would that make a difference?

Jenny

[CallmeMum in reply to 27-359]

If you’re on a mobile device click more you can search from there xxx

[27-359 in reply to CallmeMum]

Thankyou. Please don't tell anyone I needed to ask this question!!!😆😉

[CallmeMum in reply to 27-359]

😂😘

[Tracex]

Hi im on my 6th dose caeylx nxt week.. and ive worked full-time through out treatment just have 3 days off after treatment xxx gud luck with treatment xx

[Susie_50-s in reply to Tracex]

Thank you

[Beckyjh]

Hi. I had carbo and Caelyx for a recurrence- finished in June. I am a teacher and I worked in between. Reduced hours and I rarely went in the week immediately after chemo but was fine for the following 3 weeks. I had a meeting with my line manager and occupational health to agree it all.

Becky

[Hidden]

I am sorry to hear that your treatment wasnt as successful as hoped. I havent had Caelyx yet so I cant help, For now you can only see how it goes and perhaps the phased working can last a bit longer

[lorraine71-Australia]

Hi Sue, As Callunmum Said type in the search bar for Caeylx lots of good advice.

I have had good results from Caelyx and I did manage to keep at work part time.

Hope all goes well for you Lorraine xx

[Kim1958]

Hi I've been on Caelyx before. I didn't have any trouble with nausea, low white blood count, or fatigue, but I did have problems with mouth sores and peeling and blistering on my palms and soles of my feet. It was pretty challenging, but I got through it. Kim xx

[Katsmum]

Hi Susie

I too have just had 5th carbo/caelyx combo and it’s very do-able. I think constipation was the worst side effect but I take stuff from treatment day which has sorted it! As you say everyone is different so keeping my fingers crossed it will work for you!

[MissEd]

Hi susie.

Sorry to hear this, mum's just been told she needs to go on caelyx too, 5 months after last chemo - first line. So I can offer any advice but looks like you'll be having it at the same time

X

[Westawake]

Hi Susie, I finished 5 treatments of Caylx in July. I did not have any problems with hands or feet peeling although they did tell me it was one of the biggest side effects. I used Aveeno cream on both hands and feet as much as possible but always on the day of treatment. Occasionally I suffered bouts of nausea usually on the 3rd week. Also odd problems with the bowel.

Good luck with treatment ahead, hope you get good results.

Take care

[airfemale]

I am probably the champion of Caelyx. This is my second time on this drug. It worked beautifully the first time minimal side effects minor hair loss not noticible. Some mouth ulcers. Day one constipation. Always prepare the day before you start with your preferred laxative. I also found I needed to watch my intake of food staying away from highly spiced foods for the first few days. This was because I had major reflux so I was prescribed nexium or something for stomach problems. Aside from that all the symptoms were manageable. This time around I had problems with the first cycle but after that it has been pretty easy. Just as after thought for everyone. I have suffered a fungal toe for nearly two years and nothing helped all pills and potions, paints etc, my immune system just wouldn’t heal it. Since I have started Caelyx again, my toe is healing. Go figure. I had to laugh. I hope I have helped. It is a good drug for some people they seem to get a good result on this. Best Wishes. Sharon

[SueMcI]

Hi Susie_50-s, I'm coming up to my fifth lot of Caelyx and Carboplatin, and on the whole, my side effects have been minimal. The worse thing for me has been the bouts of constipation which at times have been very uncomfortable, causing me to bloat and have bad pains. Docusate and Molative laxative sachets seem to shift things eventually. My consultant has just advised me to take a sachet every evening, even when I'm not constipated to keep things 'regular'. I have occasionally had a sore mouth, but the mouth wash seems to ease it and mostly it is gone by the next day. I hope you get on well with it. Are you having Carboplatin as well? Hope that you are able to return to work with the minimal of problems. Good luck

[Susie_50-s]

An update. Last week I went for my first round of Caelyx and had an anaphylactic reaction to it which meant an over night stay in hospital. I had an anaphylactic reaction to Paclitexol when first started on chemo back in March and became allergic to Avastin too.

I am now about to start Gemcitabine. It will be administered week 1, 8, 15 and a rest week.

I have recently returned to work on a phased return.

Can anyone shed light on their side effects and how this may work. Is work doable?

Am I likely to lose my hair again or will it just thin?

Any feedback is very much appreciated

Thank you again xx

Sue