I've been Ned since December 2019 ,three month blood tests ,my phone consultation with my oncologist was good ,still OK ,I asked what my ca125 was ,never asked before ,he said it was 17 up from 16 last time ,should I be worried ,he wasn't concerned ,I don't like phone consultations ,I never ask the right questions, I'm thinking its slowly rising.
Cheryl.x
Hi there, absolutely no need to worry, your oncologist is spot on. Mine went up from 18 to 37 during the period I had Covid. It’s now back down to 24 by itself and hopefully even lower next time.
My nurses and Onc have said that the level fluctuates regularly and that any mild infection ( UTi) etc. can alter it.
I was worried sick when mine kept jumping up but it went down again so I’m a bit less stressed about fluctuations than I was.
One point is nothing to worry about, though it’s hard not to worry after our diagnoses I know!
Denise xxxxx
Thank you for the reassurance , I'm still learning how to cope with being OK ,most of the time now I'm OK but suddenly get a panic ,thank you Denise.
Cheryl xx
I totally get it Cheryl, I worry about every little ache or pain. I was convinced when my Ca kept rising that it was back and was astounded to be told it had gone back down again. I think I told the consultant who phoned me that I loved him!
We call my onc. Dr Gorgeous, because he is ,not to his face though haha.x
Haha, mine is to; you’re not in Bristol by any chance? Xxxxx
Haha aren't we lucky ,well lucky ish, no I'm in Lincolnshire. Xxx
I thought you might have my consultant too. Both clearly handsome as well as wonderful at their jobs! It helps; haha! Xxxxxxxxxxxxxxx
hi who is your oncologist in Bristol? Are you under St Michaels?xxx
Yes, are you too? They’ve been amazing! X
Im in weston super mare, and the oncologists have clinics in weston my consultant has just left the trust , so im not sure who is going to replace her,I think it might be Axel Walher who is quite charming but staight to the point .Who is yours .
The very same. He is absolutely brilliant and will always answer any questions you ask honestly and clearly. I feel very comfortable talking to him. Another lady I’m friends with has also found him to be professional, honest and kind.
Wishing you all the best with your treatment. You will be in good hands. Also, sometimes I have spoken with and on one occasion seen a different Oncologist and they have all been great.
I have a telephone consultation on Friday with him, Ihave seen him a few times before but I have been with Kristelle Van Brockdorf for nearly four years so its having to get used to someone else, where abouts in Bristol are you?I have just started Naraparib all ok so far ,are you on treatment of any kind
take care Sandraxxx
Hi Sandra, I’ve not come across Kristelle and it must be unnerving to have to change consultants when you really get on with the one you’ve had for a long time. I’m sure you’ll like Dr. Walther very much too though, he’s really kind and listens well to any worries you may have.
I’m currently on Olaparib and apart from a few tummy issues, it’s going well.
I live in Portishead. Xxxxx
Hi Cheryl Would think it’s nothing to worry about , just up 1 point , and your oncologist didn’t seem concerned . I have just had my bloods done and CA125 up from 7-9 but it’s fluctuated like that since after my op 2018 . Perhaps you can speak to your oncologist nurse if you are concerned . I am making a list of questions to ask onc with telephone appt on the 16th otherwise I will forget 😀 Lesley Xx
Thank you Lesley, I'm still learning , I feel reassured now ,going to stop worrying until a week before my next check 😀
Cheryl xx
Hi Cheryl.... no you shouldn't be worried. Mine over the last 7 years has risen by one point then dropped again. I asked why this was and was told sometimes it's just the way the result in read, differs from one person reading it to another. Your CA125 is well within normal range. Deffo worth raising a glass to! Congrats - I'm having a really stressful day working from home and you have just given me the first smile of the day hearing your good news, thank you!!
I'll stop worrying now ,thank you ,just had a wobble ,sorry you're having a stressful day ,hope it gets better ,pleased I made you smile , we love good news don't we .xx
Cheryl
We certainly do, your news deffo made me smile!
Definitely no cause for worry I would say! Mine goes between 10-14 each time. I was also told that the number of spins on the centrifuge can affect it, so depends who does it! x
Thank you ,I do feel reassured now .xx
Thats a beautiful number! As long as under 35 ❤
Thank you Cynthia ,guess I had a panic .xx
So happy you remain NED Cheryl and your CA125 remains within normal range. 😁
I was told by my registrar before I was diagnosed, there are 24 different reasons/ causes why a CA125 is raised, inflammation, infection to name just 2 of them.
Here’s to many years being NED 🙌🤗😁
Jackie 🌈
Thank you Jackie , I panicked ,😀😀 I really must try not to ,I feel reassured now.xx
Cheryl
When you have been given a Cancer diagnosis, it is devastating! The mental impact is far worse than the physical experience because it creates FEAR The key is to keep this fear at a distance. I totally understand Cheryl, we all have our panicky moments.
Having Cancer has given me a huge wake up call.
I try to choose very wisely the life I want to live now and I say to myself I will survive until I die.
Sending lots of love 💓🤗😊
Yes indeed ,I intend to enjoy my time as much as possible .xx
Hi Cheryl,
Whoop, whoop! Brilliant results- long may it continue 🤞🏻🤞🏻🤞🏻🤞🏻.
Mine was 9 at the start of the month been NED for 2 years now. Got some odd tummy pains but nothing like before diagnosis, but still that little gremlin sits on my shoulder and whispers in my ear. I do my best to ignore it - the CA125 can’t be wrong can it? Scan in September just to see if all is good.
I’m looking forward to the summer my girl and her children are coming to stay for a couple of weeks here in la belle France. So that gremlin can go and do one 😘
Stay well Lovely.
Joy xx
Fantastic you Ned for two years , have a fabulous time with your daughter and grandchildren .
Cheryl xx
Ca125 very inexact but a 1 pt change not necessarily meaningful. Best is a ct scan plus a tep scan. Ct for where and what volume tep to highlight any suspicious cells. I agree phone consults dont help much.
Thanks for replying ,I feel reassured by all the replies , next appointment, I will ask for a scan .
Cheryl x
As your in NED the minuscule increase in the CA125 is negligible. Well done you, Cheers X
Thank you ,I feel reassured by all the replys .xx
Hi Cheryl, your CA125 is particular to you, it's different for everyone some people have CA125 in the thousands. I've been told anything under 35 is normal range but if it climbs above it could be an infection or local inflamation. Mine recently went from 8 for penultimate chemo to 26 as I had pleurisy but it's just gone back to 11.
Take care and good luck, I panic all the time too. Sue xx
Thank you Sue ,I feel much happier about it now ,still getting used to being treatment free.
Cheryl xx
Long may it last and all the best. Hoping to join you I'm on Avastin for maintenance until January all being well.Sue xx
Hi Cheryl
Great update, long may it continue. Praying for you, for peace of mind & a continued NED. Sending my very best wishes to you.
Lots of Hugs 💕
Hi Cheryl. I’m the same NED since 2019. My CA125 goes between 11 and 24. I know the normal range is up to 35. But listening to my oncologist and the ladies on here even if it goes above 35 it would be a wait and watch scenario, unless we was symptomatic with other things. At diagnosis my CA125 was 12500 so please don’t worry. It’s on all our minds ,me too, but we need to live. Take care xx
Thank you ,I feel reassured by all the replys ,still coming to terms with it all ,but doing my best to enjoy life .xx
Cheryl don't worry a friend who works in blood lab says variation of one can be in the testing and anything under 35 is regarded as being in normal range.
Brilliant, thank you , I'm going to stop worrying now and enjoy the summer ,well as much as possible 😀 xx
Please, please stop worrying about an increase of one while still in the normal range. I can't believe the tests can be that accurate. Mine has gone up from 610 to 903 in 10 days and, although I am not happy about it I am trying to put it to the back of my mind and enjoy everyday. As long as I am doing my best to fight this b.... disease and I can do no more, why worry (I know easier said than done but worrying gets us nowhere).
As you have said now enjoy the summer, your family and friends and push those unfounded worries to the back of you r mind. Best of luck Jenny xx
So sorry your numbers have risen Jenny ,I'm sure your team are on it ,I wish you luck in the future and sincerely hope you get control of this awful disease again ,I'm also sorry and ashamed I was such a wimp .sending love .xx
Cheryl
Ned 💕🤞😉
NED
NED
