125 double in 2 weeks now over 800

Hi ladies, my 125 to-day showed it had double in two weeks now over 800 this was

the amount after 4 doses of single Docetaxel. My clinic nurse has left a message for my oncologist to see if she wants me to have more, I don't want to continue if it's not working this is my 4 line I don't know where to go from here, so depressed to-day look like a puffer fish I've cried so much.

I know it's a hard question but has any one had their, 125 go up so fast and go down after 4 or 5 doses of Docetaxel. Thank you for taking the time to read my ramblings.

I know it a hard journey for us all but it help a bit to write down my fears to someone who understands Thank you all. Lorraine xx

19 Replies

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  • Hi Lorraine,

    I'm sorry I don't have any words of wisdom to share with you, but I hope you get some answers soon. Sending you a gentle hug xxx

  • Thank you it's always encouraging to know that I have your bet wishes, hope all is well with you ..Lorraine xx

  • I sometimes hate the impact the numbers have on us. I learned something new the other day. If you are P53 positive there's an option for some of hormone therapy. Maybe time to ask for options and the risks so you and your team can decide together

    LA xx

  • Hi Lily-Anne, Thank you for your advice I hope my oncologist will have some options for me when I see her,sending you my best wishes ...Lorraine xx

  • That's interesting. Where did you find that out? I understand that a majority of people with all cancers have a P53 mutation. I found that out somewhere when I discovered I had!

  • Oncology told me, you are either negative or positive. I knew I was positive but didn't really see any relevance

  • Hi Lorraine, I'm sorry I can't advise you on this but just wanted to send big hugs. I'm sure somebody more qualified than me will be able to advise, I really don't blame you not wanting to continue with this treatment if it's not working, hopefully it's something else other than disease that's affecting your CA125, maybe a scan is necessary? See what the oncologist suggests and the maybe a new plan of action is in order. Do let us know how you get on. Lots of love ❤️ xx Jane

  • Hi Cropcrop,Thank you for all your best wishes I'm sure my oncologist will call for a scan, I will have to stop crying and just not give up though it gets harder and harder sometimes, sending you my best wishes for your health also ..Lorraine xxx

  • know exactly how you feel they don't give you half enough information to put your mind at rest. When I was recently in hospital I hand wrote a list of answers I wanted and presented it to the docs at visit time. They could not avoid answering then.

  • HI Steffi, I get my list form all the lovely ladies on this site my poor oncologist now when I go in she ask, is this the list from the ladies ( all in good humor) Thank you for your reply and hope all is well ..Lorraine xx

  • Hi Lorraine, sorry I can't be of any help, this has never happened to me and i've never had that regime either. Thinking of you. Big hugs and best wishes. Ann xx

  • Thank you Ann, I'm feeling a bit better this morning just will have to wait and see my oncologist, sending you hugs and best wishes hope all is well with you.

    Lorraine xx

  • I've had bad news re marker readings this month, so can understand your concern over the jump. I'm currently at 800. When I raised this with my CNS however she assured me that the numbers are most definitely not linked to the severity of the disease. For instance, someone with CA125 of 120 can be at a more worrying stage than someone with 2000. And yes of course sometimes there are rogue spikes which confuse us, and can be put down to a number of non-cancer-related issues. Just don't assume the worst. Thinking of you x

  • Thank you for your encouraging post, I will keep your words in mind and hope all goes well with you...Lorraine xx

  • Lorraine I haven't any direct experience with this but just wanted to send you some positive wishes. My ca125 has been on the rise since January and now I need to see what can be done. I hope things stabilise and you start to see some good results... fingers crossed.

    Netti x

  • Thank you Netti, This journey is like a roller coaster up down up down it would be nice just to get it stabilized for a nice break and better still good results, I'm sending you good wishes and hope your team can soon have you on the right path with your treatment..Lorraine xx

  • Thanks Lorraine. We'll get there.

    Netti x

  • My CA125 was rising on paclitaxel so I've now come off after 15 doses. I'm having a break as I've been having chemo since November 2015 with just 6 weeks off last summer. It sounds as though you need a conversation with your doctor. My oncologist mentioned etoposide but I need a bit of a break and will have a CT scan on May 8th before making any decisions. Have they suggested that there is anything else you could try? I've had carboplatin, gemcitabine, cisplatin, paclitaxel, avastin, tamoxifen and caelyx at various stages of my six year journey. Some have worked and given me long remissions and some have not. I hope you find something that is effective for you.

  • Thinking of you, Lorraine. It's one worry after another, this silly OC experience, isn't it xxx

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