Caelyx/carboplatin not working - what's next in the pot???

After two cycles of caelyx and carbo my CA125 is still rising steeply. It's risen to 4600 which is an increase of over 1000 in a month.

The oncologist said that this regime is a slow releasing drug, but after 2 cycles they would have liked to have seen a reduction.

She said that they would give me this 3rd cycle, as I am coping quite well (am I?) and will scan me before my next appointment.

Anyone know what they may offer next?

Feeling quite low at the moment and need bucking up.

Where better than my friends in HU to give me some support.

16 Replies

  • I am no expert but sometimes when treatment starts, the figures go up to come down if that makes any sense. It has happened me on a slighter scale and then they came slowly down. The bloods they do on the second cycle really only reflects what the first treatment does. This is how it was explained to me. I am sorry that you are down at the moment, but hopefully after the next treatment things will start improving or the onc may have a plan b.

  • I was on Caelyx and he didn't tell me my ca125 untill after the third then a scan , there was a marked improvement , went the six stable , still bloated but stable , it's me who hot the drain s don't worry , Iike I did , slow worker xx annie

  • Thanks Annie. That's really cheered me up. I do hope it has some effect because it's a very harsh chemo for me.depression is the worse thing. Up and down moods.

    Good luck and thanks again for the uplifting reply. Irene xx

  • Hello Annie. My Mum has had her fourth Caelyx and I thought her tum looked a bit bloated last time I saw her. Is this one of the side effects do you know? She hasn't been offered a scan and her CA125 has been going down slowly. Thanks. Jane x

  • Hi there. Sorry to hear mum has OC. I know some ladies are bloated as their aceties has returned and they need a drain.

    Ask the onc to check but the CA 125 going down is a positive sign. maybe they will dvan sfter the 6 cycles. All the best for mum. Irene xx

  • I'm no kidden I thought I was finished , he was surprised why Annie , I look nine months pregnant should Clemo not take some down , not always , so if he's no worried don't u , don't be depressed life's too short u could drop dead with a heart attack lol xx

  • You're not wrong lol.

    I do try to remain upbeat and positive but sometimes it's hard.

    Thanks for your reply xxx

  • How do you know it's not working without a scan? Everyone tells me CA125 is irrelevant. It could be high because of the treatment and not that it isn't working. I know it's difficult not to worry but do try until treatment concludes

    LA xx

  • Yes I think you are right. Let's see what the scan shows and take it from there.

    This chemo is quite harsh and apparently a slow worker. Let's hope it gets a move on.

    love irene xx

  • In my mam's case, ca 125 is never hugely focused on, but she had caelyx alone as second line treatment and we were told that caelyx might make things seem worse before they got better, that an improvement wouldnt be expected early on as that's the way it works. Can't remember anything else but that's the jist of it, hopefully that reassure you a bit.

  • It certainly does. Thank you for letting me know that.

    I hope thats the case for me.

    All the best irene xx

  • Dear Irene

    I am sorry you have this worry. I so hope that after the third dose you will see an improvement. I am following you closely as I have just started this regime.

    I have found it hard and only just feel back to normal after 10 days. Normally I feel better after 7.

    I am sending hugs from Sussex. Georgie x

  • Hello Georgie. I hope there is some improvement after the 3rd cycle. It's a really harsh chemo and affects me badly.

    Constipation with a Stoma isn't much fun!

    I find the first wek awful, then I seem to get a bit better day by day. The tiredness is the worst.

    Wishing you well with your treatment.

    Love and hugs back Irene xxx

  • So lots of good answers here, but Caelyx didnt work for me, CA125 very high (10,000plus) and Scan not great after 3 rounds looked a bit bleak at christmas to say the least. Went on Weekly piclitaxil and that did the trick for the past 6 months, just about to change again, but happy to have such a good response while it lasted! Hope the next one is even better!

  • Hi there. Sorry to hear it didn't work for you.

    Don't think I fancy weekly taxol - I was on the ICON8 trial and had weekly chemo - never felt so I'll in all my life!!

    How did you cope with weekly taxol?

    Hope this isn't offered to me. Not sure if I could cope.

    Take care. Irene xx

  • For Christina caelyx 'kicked in, after 3rd lot, unfortunately our Onc didn't tell us the CA125 result for it was stopped purely on the basis of CA125 taken the day BEFORE 3rd lot.

    As others have alluded to it does tend to kick in after 3 or so infusions.....hang in there and hopefully it will for you as well.

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