Caelyx as maintenance

[chrissapam]

Has anyone in the UK had experience of this and how did it go? Niraparib has not worked for me! Hope everyone is determined ++ this autumn! xx

[lorraine71-Australia]

Hi Chris, I'm not in the UK in Australia but Caelyx has proven to be the most successful chemo for me,

I know this is not always the case for everyone but I have been lucky.

Ive just finished 6 treatment of carbo/Caelyx my 125 was 1300 after 6 treatments now down to normal

I had a second opinion with the prof of oncology at our largest hospital and he is having good results with caelyx as maintenance so my oncologist is happy for me to start it as maintenance also, this will be my next treatment on Monday for as long as helps.

Chris have you been on Caelyx before and are you being offered it now as maintenance or is this going to be your first treatment. I hope if you do go on Caelyx it proves to be good option, best wishes and hope you get the right advice to help........ Lorraine 💙💙

[chrissapam in reply to lorraine71-Australia]

thanks Lorraine....I am not being offered Caelyx as maintenance but I think I saw an earlier post of yours which referred to it! Like you, I had good results with it and instinctively it felt right.

Am quite keen to discuss it with my oncologist so was trying to get more info.

Thanks very much for your post Chris xxx

[lorraine71-Australia in reply to chrissapam]

Hi Chris this might help ..academic.oup.com/annonc/art...

best wishes Lorraine xx

[chrissapam in reply to lorraine71-Australia]

thanks lotrraine xx

[chrissapam in reply to chrissapam]

sorry about spelling!

[Hidden in reply to lorraine71-Australia]

Well done on your results Lorraine ... I'll ask about Caelyx as an option for me at the next appointment. Dawn

[Zena41]

Hi I'm having this as first line next week

[chrissapam in reply to Zena41]

...go for it....as a layperson, who it seemed to work for am keen to talk about it.

Have realised......however good they are, most medics have not been in our situationy(!)

Had a doctor the other day brave enough to tell me I had been right about something he had dismissed. They are human after all(!)

Best of luck, will be rooting for you, love Chris xxx

[ricky23]

I've been offered 6 cycles of Cyelax after my radiotherapy next week. Carboplatin didn't work cancer came back just 4 weeks after I finished IS Cyelax worth a try ? This is my 3rd reoccurrence. Wasn't going to try it ..so frightened it will fail. Is it a hard chemo.

My head is messed up told I had months left without treatment .but this post has caught my eye a day given me a little hope ! x

[chrissapam in reply to ricky23]

Is hard for some but not too bad for all....having used the mouthwash and skin cream they gave me ....it felt one of the better ones for me....as for Lorraine so it seems....fingers crossed it is the same for you....don't give up! Love Chris xxxx

[lorraine71-Australia in reply to ricky23]

Hi Ricky,Just read your post as Chris said it's has worked for her and myself ,as we know chemo works differantly for some and not for others, I have been lucky this is my 5th line in 3 years and it is working well . The side effect of Caelyx can be hard but manageable. Don't give up would you feel better having a second opinion on your treatment ... Take care best wishes Lorraine xx

[antheamary]

I have just stopped caelyx after x3. Sorry 5th line treatment, not working for me. Now going to RM for a trial.

[chrissapam in reply to antheamary]

am really sorry about that. Think Caelyx worked for me but it may have been the combination drug.

The Niraparib I had was at the Marsden (which probably rendered me ineligible for trials) but hopefully trials will work for you. They always try their best for you there. Try not to be discouraged...they will monitor you well. And it is so helpful that it is a cancer hospital C xxxx

[airfemale]

Hi I am also on Caelyx and Carboplatin. As I have probably said before this is one of the few Chemo' s that have worked for me. I am on this at the moment and lining up to my 4th one in one weeks time. Unfortunately I am unable to have it again as I am reaching my lifetime dose. It has halved my CA125 in 2 treatments and I am feeling really well. I have advised other people to discuss this with their oncologist as not all chemos suit everyone. I have had minimal side effects and hardly any hair loss. To me it has been a wonder drug. Sharon

[Hidden in reply to airfemale]

Well done Sharon - you've had a very encouraging response. Long may you feel really well. Take care, Dawn

[airfemale in reply to Hidden]

Thanks for that. You too. X Sharon

[chrissapam]

thanks for this...am getting fascinated now....wonder if there is a genetic connection in relation to who it works best for? Chris xxx

[Hidden]

Hi Chris. I too am in Australia but on the other side from Lorraine - several thousand miles away. Caelyx is being used here in Perth as maintenance now but I think only by women who've finished a full line of it - so as a continuation. I think it's continued if the CA125 hasn't quite managed to reduce to normal but is getting there. I had corbo/caelyx for 2nd line & it's given me a v good remission. However, it wasn't without some nasty side effects. After 2 treatments, my onc reduced the amount of the caelyx by 10% & it was bearable after that. I do hold Caelyx in high regard but it's not the friendliest of drugs.

Yes, it seems to be increasingly clear that our personal genes affect how we react to all these drugs. Good luck. Pauline

[airfemale in reply to Hidden]

Hi Pauline I am in Queensland north of Brisbane. Good to see other Aussie. Yep! This Chemo thing is tough. Keep up the good fight. Sharon

[chrissapam]

seems the aussies might have it right to some degree....am fascinated that we apparently don't operate in the same way in the UK....will try to investigate(!!) C XX Thanks for enlightening us....