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Raised ca 125 levels??

Posted , 7 users are following.

debbie_39876
debbie_39876

Hi,I've just been told my ca125 levels are high, doctors said it can be a ovarian cyst, ovarian cancer or could just be because I've got RA, have and other ladies had this and it's just been down to arthritis???

0 likes, 29 replies

29 Replies

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  • skhavis
    skhavis debbie_39876

    Posted

    Hi Debbie

    Who gave you the result ? Did they tell you the number of your level. My MIL had ovarian cancer but if number stayed below 47(I think) then no active treatment.

    I hope the person who gave you the result was qualified to offer that opinion.

    I would ask for clarification promptly as I am sure your really worried X

    • debbie_39876
      debbie_39876 skhavis

      Posted

      Hi, it was my gp, gave me the results today.. They at at 45... I'd never heard of this test before so just sat there dumbstruck as he told me

  • sherry29159
    sherry29159 debbie_39876

    Posted

    I kept getting cysts in my womb and had to have hysterectomy as they could have turned cancerous. I was told it could have been caused by my cancer drug tamoxifen but I think RA drugs have a lot to answer for to.
    • debbie_39876
      debbie_39876 sherry29159

      Posted

      They do, I'm on methotrexate and gollimad, (Simponi), I've been dreading the day they tell me I might have got cancer because of these drugs, but without the drugs o can't even move

    • sherry29159
      sherry29159 debbie_39876

      Posted

      I know. But that's it ... No choice. I was offered biological drugs for my RA and some of the drugs offered warned that people who had had cancer should not use them. I think that speaks volumes. I know that in my desperation to ease my pain I am putting myself at risk with other nasty illnesses. Its still early days with all these drugs and we don't know long term dangers.

    • debbie_39876
      debbie_39876 sherry29159

      Posted

      I'm just about to be taken off gollimad because it's affected my liver, I'm just waiting to try a new biological, but it's so scary putting all these drugs in your body... X

    • sherry29159
      sherry29159 debbie_39876

      Posted

      You must be in the States as I have never heard of gollimad! Do you know methotrexate? That's what I am on and liver function needs careful monitoring.

    • debbie_39876
      debbie_39876 sherry29159

      Posted

      No I'm in the UK, I've been on it 2 years. U have to go through a screening process to get on biological drugs, and tried things like methotrexate, I take methotrexate as well, but most the drugs I tried never worked... They think it's the methotrexate that's ruining my liver

    • sherry29159
      sherry29159 debbie_39876

      Posted

      Yes I am on bio. Rituximab. Where are you in UK? That is a new name of a drug to me. I am still on methotrexate maximum dose injections but it doesn't work so I got bios. It was tough waiting for funding decision.

    • debbie_39876
      debbie_39876 sherry29159

      Posted

      I'm in Portsmouth... When I started gollimad two years ago it had only been out 3 years, so it's quite new

  • cindy52759
    cindy52759 debbie_39876

    Posted

    Here lies the problem, whatever we do we are screwed.  I'm on methotrexate plus remacade and without the remacade I can't move.  So do we go for quality life for now and maybe get cancer down the road or do we suffer excruciating pain and live longer?  I don't know what the answer is.  I'm fortunate that the metho doesn't have side effects for me like others but still, you know if is hurting your liver.

    • sherry29159
      sherry29159 cindy52759

      Posted

      Yes I have had this discussion with a lady who has been on rituximab for 4 years and was advising me about it. She said it had given her her life back and she can enjoy her grandchildren. She said she lives for today and to hell with the future. I think we are of the same mind. X
    • debbie_39876
      debbie_39876 sherry29159

      Posted

      I felt the same way, worry about today, not what's in the future, I always said the benefits outway everything else... Until now...but hopefully it's not cancer and it's something that's easy fixed

    • sherry29159
      sherry29159 debbie_39876

      Posted

      I am very sure you are OK. Don't worry. I know it hard not to but the odds are more likely to be that its something less scary. X

    • debbie_39876
      debbie_39876 cindy52759

      Posted

      That's the thing, after seeing my nana die from arthritis when I was 15, I swore when I was 26 and got it that I would take anything not to land up like she was... Couldn't walk for nearly 15 years, she was all twisted and deformed.... But it's surprising how little information I've been given about all these drugs in the past.. Just normally get given a leaflet and sent home to read it... And they don't tell you very much really

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