Slight rise

I know I am being silly but this worry is really spoiling a very exciting time for me. I've just moved into a lovely house with my partner and I can only see doom and gloom. After last chemo yesterday CA125 was 15. It did rise to 17 but the returned to 15 where is has been for some time. Last week it was 20. My tummy area feels fine. I'm tired but just moved and on Avastin. I have throat problems but believe that's avastin. I'm convinced it's back. I can't tell anyone my fears as they get upset. Has anyone had a rise and fall in CA numbers?

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  • Hi Gleedy

    My CA125 varies a bit every time and that's not unusual, so they tell me. It's all well within the normal range and many things can affect it apart from cancer! Try not to be worrying about numbers too much and concentrate on getting your lovely new house exactly how you want it! Good luck and hugs

    Jane x

  • Thank you. That's reassuring x

  • Hi, theres lots that can affect your CA125 and given its well within normal range try not to worry (thats so easier said than done!). I think every time we get a twinge, an ache, a slight rise and fall in CA125 we convince ourself its back I know I do but just remember how low it is. Enjoy your new house, big hugs Kathy xx

  • Thank you. It's more the please not now I've got a chance to be happy so don't spoil it!!!! I'll try and concentrate on unpacking x

  • Hi, you're never being silly when something is worrying you. Rationally you know that your CA125 can be impacted by other things but that can sometimes be hard to really acknowledge by ourselves can't it?

    In my case my CA was only 30 at initial diagnosis and went to a low of 13 after chemo 5 before going to 14 post chemo. It was 21 at the end of Nov at my first 3 monthly check up and due to the fact that I was having abdominal grumbles I was given a CT scan and repeat blood 10 days later. My CA125 was then 39 but scan was clear so sent away on watch and wait with my next Onc meeting in Feb. Rising CA125 but NO symptoms which I was ok with, yes a bit worried and interested as to which way it would go next.

    You'll know from reading my posts that I then started not having much appetite and feeling unwell and I asked my in GP if she would approve a CA125 test which I had last Wed. That came back at 2292 and led to my hospital admittance on Wed. So now a Rising CA125 AND lots of symptoms.

    If you are really worried then speak with your GP - my reading went up three times and more than doubled. 14-21-39. But at that time NO symptoms.

    Hopefully you have a sympathetic GP and you can share your concerns there if you don't want to upset your family. However I also had a very firm chat with my hubby when I was diagnosed and said that I NEED to be able to talk openly with him and have him LISTEN to my fears and I will do the same for him. Sometimes you just need to talk and I've forbidden anyone from telling me the platitude 'Oh it'll be ok!!!" Just LISTEN to me and acknowledge me!

    I hope you can find a way to move forward and enjoy your new home, have you been to the OvaCome support group near you yet? That may provide another listening ear and point of view maybe

    Thinking of you

    Take care

    Clare xx

  • Thank you for replying when I know you have a lot to deal with yourself. I can normally talk to my partner but we've just moved in together and he is so happy. I have oncogist in a week and a half's time. I'll hope for support then xx

  • Hi Gleedy,

    I was chatting to someone the other day whose CA125 goes up and down a bit each time she is tested. For her, it's just one of those things and she's still in the clear and I hope it's the same for you. Why not see if you can get retested in a couple of weeks time and go from there?

    Yosh x

  • Thank you. I will at my next appt xx

  • Hi

    As others have said CA125 can be affected by so many other things so try not to worry.

    Mine was 3880 when diagnosed and went down to 29 after 4 chemos . Then after surgery was told have a clear scan but Ca125 went up to 135 and sent me into panic despite being told that this can happen . Was too frightened to ring for my next results but eventually found out had gone back down to 22 after next chemo. When I asked my onc what was normal she said it can differ but for me she was happy with anything under 30 and it was more about the trend .

    So if you Ca125 is low and going down overall try not to worry but as others have said don't be frightened to ask your CNS for guidance to put your mind at rest .

    Let's hope they soon find a more accurate way of measuring this horrendous disease .

    Enjoy your new home , how exciting . I have the urge to decorate the whole house but hubby isn't keen !

    Love and best wishes Kim X

  • Thank you. Old house so I'm sure I can redirect my thoughts for a bit xx

  • Yes, Tracey. It's completely normal. Indeed I'm not at all surprised at all. It's been a tiring time and even a slight throat infection or cold can trigger a rise in CA125. Your medical team will only investigate if it gets to 30+. Anything under 30-35 is within the normal range. So try not to worry too much. ( easily said, I know!) If you can pop into COPES on Feb 4th, there should be a CNS you can talk to. Or ring the Ovacome helpline nurse for more info. Take time to rest a bit, as much as you can. Enjoy your new home and new steps after what has been a tiring time. I'm sure you're getting better and stronger all the time.

    Love Wendy xx

  • Thank you Wendy. I've changed my life to make it less stressful. As of 31st March I won't be in a managerial teaching role and hope to do supply. Perfect dream a job covering ppa on a permanent basis. Your advice has helped. It has been stressful moving xx

  • I'm sure you won't regret taking a less stressful path with your career. Your move sounds ideal and you'll bring a wealth of experience to the new role. I stepped down from 15 yrs headship and went into class teaching. Best thing I ever did! When Hazel is better (not cancer-related!) have a word with her at COPES. She did something similar and loves her new role.

  • My CA125 went up on Avastin - I think that can happen. When I say up, that was by hundreds rather than one or two, but I know we're all different. My onc said she would be going on scans and symptoms, and that point I decided not to know my CA125 - some women do this! Since then I have felt much better and they did tell me it went down again eventually! I don't know what it is today but I feel brilliant and I'm just back from skiing in the Alps without anxiety. If your tummy feels fine and you feel fine, then that's good ... :)

  • I really think I should adopt this approach. Slightly jealous of your skiing trip. Glad it went well xx

  • To be honest, I am amazed I got there when I consider that last year I couldn't go up the stairs. Just shows you. Hang on in there ...

  • Congratulations on your new home .... oc can be so insidious and try to take our joy .... try not to worry as ca125 can be raised for many reasons .... I freaked when mine went up from 7 during treatment to 14 after its being at 14 since ... they just say that's fine but it does freak you out with all the symptoms I've been left with ... guess you just get used to it and watch out for what is abnormal for you whatever that is ... rest up and feel better soon ❤🤗

  • Thank you. Stress of moving and handing my notice in may well have affected it. I've calmed down a bit. It's always that 4am slot that does it xx

  • Yes, we need to keep as calm and happy as we can! Something we need to keep working at. I am sure things will settle down - big thing, handing in your notice. And the 4 am slot isn't a good one, that's for sure. Try planning a little treat ... even just a little one ...

  • Fluctuation is good and normal. If your numbers start to double on each test then there would be cause for concern

    LA xx

  • I decided at the beginning of the process not to hear my CA125 scores. This was partly because reading posts on here made me think it would be an extra stress. I trust the oncologist to keep track. She did let slip it was 12 after my last chemo, but I don't think it had ever been very high.

  • Hi Gleedy the variations can also be attributed to the way the blood is stored in the lab If it isnt kept upright in a fridge then it changes. My onc was demented one day because all the ladies in the unit had higher 125s than normal, mine was high too but it was all down to a technical fault in the lab. The throat thing is Avastin, I found Jakeman sweets helped and also Neil Med sinus rinses to help the nose. I had a lovely husky hoarse voice for the duration of Avastin. I think stay on it and things may settle when you are settled in your new house.

  • Thank you. I just got a bit down think because moving is such an exciting things but nothing is quite the same after Oc is it? I feel better today. I'll give the pastilles a try xx

  • Congratulations on your new home. Park the cancer bus for now. Enjoy the excitement of your new home and don't let it be overshadowed by your worries. Your appointment is really close and they can check your bloods and physically check your tummy. You can share your concerns with them and then if there is anything you can speak to your partner.

    Sometimes I have just kept quiet because there's been something on at home that I didn't want to spoil and haven't regretted it as there are times we need other things to shine in our lives so that special memories are made. Let your lovely new home and your partners excitement and happiness fill your mind and ease your other worries. He sounds really supportive so if you need to after your appointment share your worries then.

    Go on Pinterest at 4am and start getting ideas for your new house 🏡 that will keep your mind focused on other things.

    Xo

  • Love pinterest. I'll give it a go. Steve has been amazing. I told him to clear off twice. His response broke my heart and I knew he must really love me. I won't tell him again. Especially after living with him Lol x

  • This is a late reply but just wanted to say that I think Avastin can send your CA125 up a bit. Mine went down a little when I finished it. It's true to say that a rise can spoil a happy time and I know how you feel. None of us really know, either what our natural CA125 level is pre-cancer, as I know it can be highish or low and everyone varies. Try to enjoy this special time xx

  • Hi Gleedy,

    I'm 53 years old from Chelmsford , I too was diagnosed with adenocarcinoma of the ovaries and PPC staged3c high grade serous cells, in September last year, I'm on carbo/taxol for 6 cycles, my Ca125 was 341 at diagnosis but went down to 41 after 1 session of chemo. After 3 sessions it went down to 6 and I had my debulking surgery and removal of my omentum before Christmas after my 4th chemo. I resumed my 5th chemo last week , after my surgery I developed an infections in my stomach which requires me to be admitted into hospital and was on antibiotic drips. And had a scan as well which showed I had 2 small nodules in my peritoneal wall so they added avastin to my 5th chemo and will continue to have the avastin for Onother 17 cycles. It's like a maintenance treatment to stop the nodules progressing and scattering. I was told ca125 can alter in different reasons, mainly if you have infections or in pain or even in distress can alter it. So as long as you feel well in yourself please do not worry.. I know it's easy said than done but we are all in the same boat and we are lucky that we have this forum where we can share all our experiences and stories about this dreadful disease!! I find very inspiring and uplifting to see others journey and makes the most of their time.. Take care always. If you live nearby maybe we can meet up? Only if you are able.. My number is 07702103580. As I ve mentioned earlier I live in Chelmsford Essex . Xxxx

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