Ca125 increase : Hi ladies. Just had my mums ca... - My Ovacome

My Ovacome

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Ca125 increase

N-A-58 profile image

Hi ladies. Just had my mums ca125 reading and it’s gone from 19 in March to 27 in May and now 35. So it wasn’t the Covid jab.

The CNS has suggested an appointment in two weeks time with the onc but surely a scan is needed before the appointment so we know where we stand?

In July my mum will be 2 years out from 1st line chemo.

What happens now? Should she be treated or watch and wait?

21 Replies

Spoke with the nurse again and my mum is getting a scan early July and a face to face on the 22nd July.

Realistic profile image
Realistic in reply to N-A-58

Brilliant that you are on top of it, most of. the others will tell you 35 isn't high but does need investigations and you've got a scan in place which is perfect. I always think the sooner we know in our situation ,sooner we can get it sorted. I noticed one of the other ladies mentioned a CA 19 never heard of that what does that detect? God bless you and your MumCA 125 is the nightmare for me up & down. My blood test next Wednesday at Christie's results via phone call day after. Love & hugs too you both SheilaFxxx

N-A-58 profile image
N-A-58 in reply to Realistic

Thanks for your message. I hope your bloods are good next week.

My mum feels ok, physically and mentally at the moment so we are trying to park it until we know what the plan in xx

Realistic profile image
Realistic in reply to N-A-58

Good luck, stay positive xxx

Oh sorry to hear that…your poor Mum! Best get the scan done and see what you’re dealing with though and it’s always better once there’s a plan. Sending love xx

N-A-58 profile image
N-A-58 in reply to Lyndy

Thank you for your message. I was a bit lost earlier but the CNS called and has sorted it all out. It’s rising, slowly, but rising.

Heading into it with a bit more knowledge behind us so will see what they say in about 4 weeks.

Hope you’re keeping well xx

Hi - my CA125 has increased monthly between March and June - from 8 to 22. My onc told me increase likely from two covid vaccines and also having started PARP Olaparib. Were you told the vaccine was not the cause for the increase?

N-A-58 profile image
N-A-58 in reply to ElayneZ

Hi, no we haven’t officially be told it’s not the jab, we have just assumed it wasn’t the jab because it’s continued to go up. Last jab was 28th April. Bloods done on Monday 21st June so a fair few weeks have now passed. The CNS on the phone seemed to imply it’s on its way back.

ElayneZ profile image
ElayneZ in reply to N-A-58

I will keep good thoughts for your mom - hoping for both of us it’s from the vaccine and starting the parp. When I called to schedule my annual mammo - they said to wait 6 - 8 weeks after having the vaccines because of inflammation. And CA-125 does increase from inflammation.

N-A-58 profile image
N-A-58 in reply to ElayneZ

Yes and for you too. That’s interesting. I will keep you all updated on the scan and repeat bloods in 4 or so weeks. Hope you continue to feel well x

Rainbow_dog profile image
Rainbow_dog in reply to ElayneZ

I had my second COVID shot middle of April- and CA 125 went from 7- 11- 14- 19 over 10 weeks- has your CA 125 gone down yet?

ElayneZ profile image
ElayneZ in reply to Rainbow_dog

My 2nd covid vaccine was 4/19 - then I started on a PARP end of April. My CA125 was 10 in April - 17 in May - and 22 in June. My pet scan was clear in April. Will keep us both a positive thought that soon we’ll see CA125 decrease. 🙏

Hi. Sorry to hear your Mum's numbers are rising - but they are doing so slowly and she is just now in the high/normal range - so there is room to breath. Her upcoming scan will provide answers.

I have been in a similar position for quite a while now...CA125 was 2056 upon diagnosis (2017) and over the course of a year (after the surgery/chemo/etc.), it dropped to 10. It stayed there for two years. It began rising - slowly, by 4 and then 5 and then 10 - each rise (after reaching a CA125 of 35) I had another scan and whilst waiting, another reason to worry. Each time, however (and thankfully) the scan showed "no evidence of disease." (The onc has her explanations, if you're interested, PM me and I'll share details).

It's a bit of a roller coaster ride, to be sure, but it is shared to demonstrate that a rise in CA125 does not alone confirm that your Mum is having a recurrence.

Your Mum and you are understandably alarmed at the number; please try to be patient and to not imagine the worst. As one who has been in your Mum's position quite often, I encourage you to hold only good thoughts until there is a proven reason not to. I've wasted otherwise precious days paralyzed by the thought of "what if?" and "what now?" or doing hours and hours of research on "what happens now?" - only to find out that the test results were negative and that nothing had changed. I think myself rather foolish now for having done so and I can't recapture that lost time, but I can vow not to use up any more time worrying about that which has not yet occurred.

Worrying, as they say, is holding tomorrow's troubles with today's strength, carrying both burdens at once...it does nothing to prevent tomorrow's challenges and only weakens you of today's strengths. (Corrie tenBoom the original author of words similar - I didn't check the internet for a direct quote - just my memory of it). Since I have adopted that as a coping mechanism/philosophy I have been much more at peace in times of uncertainty. I share it (and my experience) so that you perhaps can find some calm in the thought.

Be strong for your Mum and for yourself. Focus on the joys of today and do/say something to make it memorable.

Wishing your Mum a negative scan and years of joy and sending you a hand at your back to support you in the coming weeks. Please do let us know how you are both doing.

P.S. I found out last week, my CA125 is presently 64 and my CA19-9 is 89.7, which also was quite high. So, yet another scan was ordered and I am presently awaiting results. (we do a lot of waiting, don't we ladies?) I am walking along side your Mum and if it's of any comfort, I'll hold her hand.

N-A-58 profile image
N-A-58 in reply to SophiaMariaA

Thank you for your message. I’m sorry you’re in a similar position.

What a wonderful philosophy you have. Thank you for your virtual support.

My mums scan will be early July and a face to face with the onc on the 22nd. We will update then.

Take care and keep your positivity xx

Thank you, SophiaMaria, your sincere and uplifting words have helped me today. I will print this and add it to my Do Not Worry file to read again whenever I need to. 🙂Sashay

Hi. So worrying when it goes up! Mine was 16 when I finished chemo and I have been on Avastin since and now it's 34 so still normal. But it hasn't gone up since my last treatment. Before I had cancer it was 29. When I was diagnosed 7 months later it was over 500 but then dropped before treatment started. My onc isn't concerned and said it can 'flutter'. Hope this is a little reassurance to you.... x

N-A-58 profile image
N-A-58 in reply to LesleyGB

Thank you, that’s encouraging xx

Sorry your Mums CA125 has went up 3 times in a roll, I would feel better if CT/PET Scan was done. Praying for good results. Pat

Hi, I was told by my Onc that a normal ca125 is 0 to 40

Hi. You’ve gotten good advice here. I especially like what SophiaMariaA said about worrying. It’s one of the hardest struggles with this disease. But It’s so important to try to live and enjoy one day at a time. I’m sending positive vibes and hugs.

Ugh 😭 we seemingly are in the same position. I really hope not. My moms ca125 rose in 8 weeks and scanned confirmed small reoccurance. They are offering treatment options and she is trying to determine next steps. Finished front line treatment July 2019. Wishing you guys the best

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