Caelyx proposed.: Caelyx - hello friends, I'm... - My Ovacome

My Ovacome

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Caelyx proposed.

MarieRB profile image
26 Replies

Caelyx - hello friends, I'm seeking the wisdom of your experiences. After 9 years of Taxol/carbo for ovarian cancer, we've come to a stage where my consultant is offering me either Caelyx, or end treatment altogether (quality of life). The Caelyx may give me more time, but at issue is the quality of that time..... treatment would be every four weeks, with a scan after that. I would really appreciate your comments, thank you, and blessings, Marie

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MarieRB
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26 Replies
win_56 profile image
win_56

Hi Marie I've just finished number 3 of 6 caelyx and carbo one every month and can honestly say, for me it's been a walk in the park. I know we all react different to treatments but I felt so ill on taxol/carbo and had 3 blood transfusions and lost count how many magnesium fusions I had. I was virtually at the hospital every week. With the caelyx I've had a little tiredness a few days of diarhea. I've had no mouth ulcers but I put this down to my oncologist supplying me with corsydl which I use 4 times a day and do far so good not one mouth ulcer. Also I use Norwegian moisturiser and had no skin problems and have not felt really I'll at all but then some other people may have had bad side affects but I can only speak from my experience. I would definitely give it a try you have everything to gain. Thinking of you and hope you give it a go. Sending you a virtual hug. June.🤗

MarieRB profile image
MarieRB in reply towin_56

Jane, thank you so much for your response - it's most helpful! Blessings, Marie

win_56 profile image
win_56 in reply toMarieRB

Good luck Marie you can do this.x

delia2 profile image
delia2

Hi. I agree with Jane. I would be knocked out and slightly nauseous for five days but the other three weeks were great. During the last two cycles I was more fatigued after the first week but it wasn’t bad. You do have to use lots of heavy moisturizer on hands and feet and take care of your mouth. I think sucking on ice during chemo may have helped. Good luck! Xx

MarieRB profile image
MarieRB in reply todelia2

Thank you, Delia, and if you're reading this, June, apologies for referring to you as 'Jane' - somewhat woozy from antibiotics!

win_56 profile image
win_56 in reply toMarieRB

No worries Marie. Take care and let us know how you're doing.

Hi Marie. I found the side-effects of carbo/caelyx hard to take. After the 2nd dose, my onc reduced the dose. Never easy but it was bearable after that. I found that you knew exactly where you were with it : exactly when the constipation would start, which were the worst days & therefore how to best deal with them. But it's the first week of the 4 that's the worst. It put me straight into remission. And I'd do it all again. In fact, I began it again 3 days ago, as, after a wonderful remission of 5.5 years, I'm now back on the carbo/caelyx again.

Best wishes. Pauline.

win_56 profile image
win_56 in reply to

Oh Pauline so very sorry to hear you going through this again after a long remission. You can get through this again and wishing you another long remission. Xx

in reply towin_56

Thank you - onwards & upwards with fingers crossed ! Pauline

MarieRB profile image
MarieRB in reply to

Thank you Pauline - wishing you all the best with this next round! Blessings, Marie

in reply toMarieRB

Thank you. I'm grateful for your blessings. Pauline.

in reply to

I wish you well, Pauline. You’re strong!

in reply to

Thank you for your kind thoughts. Best wishes to you. Pauline.

Solange profile image
Solange

Hi Marie. I'm sorry you have to make this horrible decision. Personally I would give the Caelyx a go. You could always stop it if it made you feel too bad but if it gave you more time here, it could be worth one bad week in four.

Whatever you choose, I wish you the best of luck for a happy, peaceful time.

With love and best wishes, Solange 😊

MarieRB profile image
MarieRB in reply toSolange

Thank you, Solange - I think we're coming to the decision of 'giving it a go'..... everybody's input is just so helpful, blessings, Marie

Di16 profile image
Di16

Some ladies seem to find Caelyx more difficult with more side effects than others. I found it quite easy. I feel tempted to suggest perhaps give it a try, with the option of discontinuing if you have too many problems with it. I hope you can make the decision that is right for you. Di

MarieRB profile image
MarieRB in reply toDi16

Thank you, Di. I certainly found when the Taxol element was removed last February from last round, that the carbo was quite a doddle in comparison - but it's no longer working. I think it's hoping that despite being very weak after two emergency hospital visits for temperature and chest infection and bloating, I'd really like to feel stronger in myself before tackling a new regime. Blessings, Marie

Ge0rg1na profile image
Ge0rg1na

Hi, I've been on a similar journey to you, also 9 years but I've tried most of the available chemo and radiotherapy treatments and caelyx was doable compared with the rest but didn't stop the disease so I came off it after 3 months.

It's a very tough decision and giving up hasn't been how we've dealt with OC so far, so it would be a brave decision too. Good luck and with this forum, you won't be alone whatever you decide Gina x

MarieRB profile image
MarieRB in reply toGe0rg1na

Thank you Georgina - yes the stopping of treatment, despite knowing it's about quality of life, is still a Big one..... Blessings, Marie

Mumsie13 profile image
Mumsie13

Hi Marie. I have just started carbo/caelyx (1 session) and like some others I found the first week sort of wiped me out and I got that fuzzy "chemo head". I'm at the end of week three now and feeling much more like myself, perhaps a little tired. I haven't noticed any signs of mouth or skin problems🤞 except a small area where I have a chronic skin condition which has flared up quite badly- probably more to do with my immune compromised status than chemo side effects. Early days yet but at the moment it is much more doable than carbo/taxol, although I don't know what, if any, cumulative effects caelyx has. I don't know if any of this will help you in making your difficult decision but whatever you decide is right for you I wish you peace and calm as you continue your journey. With all best wishes. Jackie 🤗

MarieRB profile image
MarieRB in reply toMumsie13

Thank you, Jackie - and wishing you all the best as you progress with your treatment, blessings, Marie

Ruebacelle profile image
Ruebacelle

I had 6 caemyx infusions. No problems. Skin issues. Dont wash hands in hot water other thanthat ok

MarieRB profile image
MarieRB in reply toRuebacelle

Thanks, Ruebacelle! Blessings, Marie

That’s is a tough decision to make. I’m inclined to agree with those who said to give it a try. If it’s awful after the first dose you can always reconsider then. It’s hard to face into it if you’re not feeling strong at the moment, though. My heart goes out to you. 🤗🤗🤗

MarieRB profile image
MarieRB

Thank you, WoolyHat! Blessings, Marie

Ruebacelle profile image
Ruebacelle

Had caelyx 6 times. No problems

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