Terrible side effects

Hi everyone

Ive had a horrible 6months,first i had brain tumor removed cos oc had gone to my brain then they started me on caelyx/carbo and ive been so ill ever since nothing to do with the brain tumor thats all gone.just need to know if anyone else has had this nightmere with this combo of treatment.ps it has also given me a ca125 of 19000.love yvonne

5 Replies

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  • Hi I don't know if this will help but my first 2 cycles of Caelyx on its own was really bad I felt sick all the time and at least once a week was villiantly sick when I had carbo and taxol I tolerated it alot better on my 3rd cycle of caelyx they reduced it by 25 % and increased my lanzaprosole to 2 a day and increased my anti sickness so far I have felt a lot better I hope you feel better soon and talking to your oncologist or gp may help you should not be suffering there is always something they can do take care xx

  • I really struggled with caelyx although I didn't have it with carbo. I was nauseous most of the time and they reduced my dose. I think calyx can be quite a difficult one but everybody reacts in their own way. I felt better as the treatment went on. Let's hope you do too x

  • Blimey I thought my ca125 was high at around 2000. Sorry to hear what you've been going through x

  • Gosh, that has really been a hard six months, I am indeed sorry to hear you have been so ill, I have heard of one or two that OC also caused brain tumour but one lady I know had surgery followed by radiotherapy. It has taken her quite some time to be any way normal since so dont despair. I havent had Caelyx but believe it can be hard. Your 125 can rise with this drug but usually drops again and I hope this happens in your case. Do you have many treatments left to have?

  • Hi Yvonne. Sorry you've had such a hard time of it. My 2nd line chemo was Carbo/caelyx. Yes, caelyx is a difficult one. I had problems mainly with my mouth and hands. After the 2nd dose, my onc reduced the dose by 10%. It was still difficult but was bearable after that. What is your onc saying about your CA125? seems to me it should be closer to normal after 6 months of chemo. A friend from the support group I go to, her CA125 hadn't returned to normal after the 6 months of carbo/caelyx & her onc kept her on it for a few months more. Hope it all turns out well for you.

    Best wishes. Pauline

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