Ca125 raised on niraparib : I spoke to the... - My Ovacome

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Ca125 raised on niraparib

ritabon profile image
10 Replies

I spoke to the oncologist and my ca125 has had a spike it's gone up to 111 from 34. Otherwise bloods ok. Oncologist wants to see me in clinic soon and do another ct scan. A bump in the road but I wondered if anyone else has been thru this? I've been on niraparib for three months just about to start month 4.

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ritabon profile image
ritabon
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10 Replies
Mubblins profile image
Mubblins

I have been on zejula for past 6 months and ca125 up to 197 and fluid around the liver, will speak with doc next Wednesday, all I can say is YES it is a worry but lots of new treatments Are happening all the time, my treatment for times like these are to remain positive and not to drop that positivity , not saying I have bad days but they are few, remind myself I’m strong and I got this, this hasn’t got me, GOOD LUCK ❤️

Ocean89 profile image
Ocean89

Hi there. I’ve been on olarparib and cedrinib for 6 months and just had a similar thing happen about 3 weeks after a clear ct scan. I was taken off the cedrinib and have another ct scan scheduled in 2 weeks It’s either going to be progression or stability as the cedrinib was causing severe diarrhoea. I’m prepared for either. Definitely feeling better off the cedrinib. Had no idea how bad I was feeling previously. Not sure if this helps but I’ll update after my scan 😊. Hang in there 💜

Numi profile image
Numi

I was on Niraparib from October 2017 to July this year. Until September last year, the drug had kept my CA125 levels within the 'normal' range but last year had been creeping up. A scan in September 2020 showed a small tumour, but I continued on the Niraparib and it hardly grew at all over the next 8 months though my CA125 continued to climb, going up to 149 in June. My oncologist felt that the drug was slowing the progression and delaying needing to return to chemo. However, I started getting a lot of headaches and my kidney function was deteriorating, and at the beginning of July, she paused the Niraparib to see if that helped . My CA125 leapt 100 points that month and another 100 4 weeks later - and when I started chemo last week it was 392! So even when the Niraparib wasn't preventing progression, it was doing something to slow things down and delayed my having to have more chemo for almost a year.

bamboo89 profile image
bamboo89

I think a sudden jump like that is a bit unusual on Niraparib, its more common for it to gradually creep up. That was certainly my experience anyway - on 200mg it reduced my CA125, but I was off and on it a few times and had to eventually go onto the low dose, 100mg because we couldn't get the blood pressure and heart rate under control. On the lower dose, the CA125 rose about 20-30 points fortnightly for about 6 weeks, till I was told to stop because it obviously wasn't doing the job. Chemo now approaches instead...

See what the scan shows, and whether the marker falls again in the meantime in case its suddenly spiked for another reason. Good luck

Miriam

MOOKIE-FOX1234 profile image
MOOKIE-FOX1234

My C125 started to rise , had a scan which should no reaccurence , which was a big relief , I was nervous to read the report until I saw my Dr. My chemo nurse told me that the CA counts aren't always accurate and can jump around . I am biweekly chemo and starting back on Olaparib or lynparza as it called here . Hope that all goes well for you .XX , Gillb mookie fox

ritabon profile image
ritabon in reply to MOOKIE-FOX1234

Thanks for this. I spoke to a macmillan nurse today and she said she hears this a lot from OC patients. I'll wait for scan results.

MOOKIE-FOX1234 profile image
MOOKIE-FOX1234 in reply to ritabon

Good luck , there are lots of people who have you in their thoughts .

ritabon profile image
ritabon in reply to MOOKIE-FOX1234

Thanks so muchxx

MOOKIE-FOX1234 profile image
MOOKIE-FOX1234 in reply to ritabon

Love your cat , we had 2 dogs and two cats , down to one cat but she is such a comfort !!!

ritabon profile image
ritabon

She was my darling and I miss her. No cat for me at moment unfortunately.

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