Not sure

Hi just had my fourth dose of weekly docetaxel.thought I would ask if my ca125 had come down.well it hasn't it's gone up from 400 to 500.i didn't feel unduly concerned because this time last year it was at 2000.now I'm not quite sure what I think.i see my onc on the 5th November so I guess I have to wait till then.i feel ok apart from a pain in my groin.i had a scan on the 8th of October and feel if that had showed anything I would have been told.on the other hand as iv said before my lot seem reluctant to give out I formation.regards carolyn

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  • HI Carolyn, at one stage I was told that the 125 creeps up to come down again so at the early stages of treatment, they dont take a whole lot of notice. You are like me, I get a scan and hope that when the phone rings, its not the hospital but never ask myself/ I have scan tomorrow and get result on Nov 9th, I know I can get result if I ring but I tend not to, I agree the information is only dripped to us at times no matter where we live. I will possibly take the bull by the horns next week and see if I can get result but my liason nurse could be on hols due to mid term. I will check tomorrow and see what the story may be. Best of luck with your visit to oncologist and any questions you think of write them down so you will remember them.

  • I have a gynae oncology nurse specialist I can ring for info, though she's very busy. Do you have anyone like that? Her number's in the paperwork they gave me at the start of treatment. I have learnt over my 5 years of treatment to go to appointments with loads of questions, and I get the letters they send my GP. But mine are very good and show me scans and graphs of CA125 on the computer. I can understand the graphs but the scans are a waste of time - look like blobs in various shades of grey but I nod politely. Though they seem, from talking to other patients, not to assume we want to know. Some people don't. If you start asking questions you might get more info, if you want it. I've read that the tumours release CA125 as they die. Don't know if that's true but it could explain some of the weird results we sometimes get.

  • Hi thank you for your replies I am taking on board what you have said and have decided that if there is no improvement when I see my onc next month I will go with a few ideas of my own.i have read the treatment options and I think I know where I want to go.i have to say I don't have much faith in her and feel if I can throw in a few ideas we might get a result.thank you again carolyn

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