Still Ned.: I've been Ned since December 201... - My Ovacome

My Ovacome

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Still Ned.

fendweller profile image
44 Replies

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

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fendweller
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44 Replies
Frenchhouse3 profile image
Frenchhouse3

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

fendweller profile image
fendweller in reply to Frenchhouse3

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

Frenchhouse3 profile image
Frenchhouse3 in reply to fendweller

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!

fendweller profile image
fendweller in reply to Frenchhouse3

We call my onc. Dr Gorgeous, because he is ,not to his face though haha.x

Frenchhouse3 profile image
Frenchhouse3 in reply to fendweller

Haha, mine is to; you’re not in Bristol by any chance? Xxxxx

fendweller profile image
fendweller in reply to Frenchhouse3

Haha aren't we lucky ,well lucky ish, no I'm in Lincolnshire. Xxx

Frenchhouse3 profile image
Frenchhouse3 in reply to fendweller

I thought you might have my consultant too. Both clearly handsome as well as wonderful at their jobs! It helps; haha! Xxxxxxxxxxxxxxx

chatt2 profile image
chatt2 in reply to Frenchhouse3

hi who is your oncologist in Bristol? Are you under St Michaels?xxx

Frenchhouse3 profile image
Frenchhouse3 in reply to chatt2

Yes, are you too? They’ve been amazing! X

chatt2 profile image
chatt2 in reply to Frenchhouse3

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 .

Frenchhouse3 profile image
Frenchhouse3 in reply to chatt2

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.

chatt2 profile image
chatt2 in reply to Frenchhouse3

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

Frenchhouse3 profile image
Frenchhouse3 in reply to chatt2

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

Spirit22 profile image
Spirit22

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

fendweller profile image
fendweller in reply to Spirit22

Thank you Lesley, I'm still learning , I feel reassured now ,going to stop worrying until a week before my next check 😀

Cheryl xx

Katmal-UK profile image
Katmal-UK

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!!

fendweller profile image
fendweller in reply to Katmal-UK

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

Katmal-UK profile image
Katmal-UK in reply to fendweller

We certainly do, your news deffo made me smile!

Doglover1410 profile image
Doglover1410

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

fendweller profile image
fendweller in reply to Doglover1410

Thank you ,I do feel reassured now .xx

Cynthia18 profile image
Cynthia18

Thats a beautiful number! As long as under 35 ❤

fendweller profile image
fendweller in reply to Cynthia18

Thank you Cynthia ,guess I had a panic .xx

Cynthia18 profile image
Cynthia18 in reply to fendweller

I ask everytime what my ca125 is?

Your doing great 😁

Sisterstogether profile image
Sisterstogether

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 🌈

fendweller profile image
fendweller in reply to Sisterstogether

Thank you Jackie , I panicked ,😀😀 I really must try not to ,I feel reassured now.xx

Cheryl

Sisterstogether profile image
Sisterstogether

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 💓🤗😊

fendweller profile image
fendweller in reply to Sisterstogether

Yes indeed ,I intend to enjoy my time as much as possible .xx

JayGeeCee profile image
JayGeeCee

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

fendweller profile image
fendweller in reply to JayGeeCee

Fantastic you Ned for two years , have a fabulous time with your daughter and grandchildren .

Cheryl xx

Ruebacelle profile image
Ruebacelle

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.

fendweller profile image
fendweller in reply to Ruebacelle

Thanks for replying ,I feel reassured by all the replies , next appointment, I will ask for a scan .

Cheryl x

Iside profile image
Iside

As your in NED the minuscule increase in the CA125 is negligible. Well done you, Cheers X

fendweller profile image
fendweller in reply to Iside

Thank you ,I feel reassured by all the replys .xx

SUE7777 profile image
SUE7777

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

fendweller profile image
fendweller in reply to SUE7777

Thank you Sue ,I feel much happier about it now ,still getting used to being treatment free.

Cheryl xx

SUE7777 profile image
SUE7777 in reply to fendweller

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

Irene2020 profile image
Irene2020

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 💕

fendweller profile image
fendweller in reply to Irene2020

Thank you ,I feel reassured by all the replies I've had .

Cheryl xx

KimLJ profile image
KimLJ

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

fendweller profile image
fendweller in reply to KimLJ

Thank you ,I feel reassured by all the replys ,still coming to terms with it all ,but doing my best to enjoy life .xx

Iwillbeatit profile image
Iwillbeatit

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.

fendweller profile image
fendweller in reply to Iwillbeatit

Brilliant, thank you , I'm going to stop worrying now and enjoy the summer ,well as much as possible 😀 xx

jenny8c profile image
jenny8c

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

fendweller profile image
fendweller in reply to jenny8c

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

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