Hello lovely ladies. I wonder if anyone can help me. I started Niraparib on 15th September with a Ca125 of 35. It is now 51. My team don't seem to be worried and said that they will monitor it. My other bloods are fine.
My question is whether anyone else has had an initial rise on Niraparib. I am concerned that the little bugger is on the move again but wonder if I'm just being a bit of a scaredy cat.
Thank you all.
Hi
I’ve been on niraparib since last December, started on 2 tablets but been on
only 1 the last 6 months because of blood. My ca125 went up and down the first few months, but has now stabilised at between 19 to 23. I’m stage three have had the carbo/caleyx Plus surgery on a trial with avastin for 10 months, then had caleyx for 6 months before starting on niraparib .
Good that your other blood tests are all fine, try not to worry about ca125 ( ( easier said than done I know, ) but it’s early days yet, and your team will as they said be checking everything all of the time.
Good luck, hope your ca125 goes down for you asap and everything stays on stable for you.
Take care maggie
Thank you so much Maggie. That's a relief. We've had a very similar journey. I'm glad that your c125 results have settled at a very healthy level. I hope mine soon get in line xxxx
Hello, I am not on Niraparib.......yet, but I do understand concerns about rising CA125 numbers and how it messes with your head. I am totally obsessed with the number, so much so my oncologist has threatened to stop giving me the results. Recently I have tried to "let go" a little and feel better for it, I am having treatment and feel well so I should be thankful for that. Good luck with the Niraparib. x
Thank you Lyn. I agree about the numbers messing with your head. I now wish I hadn't asked but it is always there lurking in the back of my head somehow. I just want this to work and am scared that I'm going to be straight back into chemo again. I think that I'm probably overthinking things. Sending you all the very best for your treatment xxxx
Not to add to your worries,
But my CA-125 started to steadily rise in my second month on Niraparib.
The first month it held steady at 15, but even then I was disappointed that it hadn’t dropped to single digits.
I felt great though. Like super woman and my other bloods were fine.
Nevertheless, each month my CA-125 rose a bit more.
I am BRCA1 positive, so this was pretty disappointing.
The Niraparib definitely slowed down progression, but did not stop it.
At 88, a scan showed more tiny nodules and I was deemed PARP resistant.
At 198, I started on the DICE trial at the Royal Marsden.
This is only my second week, but here’s hoping!
I hope yours is just a glitch!
Be well,
Laura
Thank you Laura. I'm sorry that Niraparib didn't work for you. I hadn't even thought about being Parp resistant. My concern is that I had a Ca125 of 25 in July/August then 35 in September and then 51 this week. I hadn't expected such a rapid rise. My Ca125 had only gone up to 46 in January when I started carbo/Caelyx.
I'm so pleased that you are on the DICE trial and really hope that this works well for you.
Sending virtual hugs xxx
It is hard to know what to do in your case, because there is an obvious trend upwards...
Still, I have heard that the PARP can stop any growth, so you probably need to give it another month, unless you begin to have symptoms...
wishing you all the best,
Laura
Thank you Laura. I had really hoped that the Niraparib would keep my levels stable or reduce them. I didn't think that they would rise like this and I've only been taking them for just under 3 weeks. I'm just hoping that it is too soon to worry. The oncology team don't seem concerned. It's just me who is getting stressed out.
Hopefully yr CA125 will settle, if yr team arent worried then try not to worry (so much easier to do than say I know) but they are the experts so may well have seen this response before xx Good luck, Kathy xx
Thank you Kathy. I'm really hoping that this is the case. They definitely didn't seem concerned. I suppose it's still early days. Xxx
Yes I’m on it my ca125 is rising ! Now 298 going’s to America in two weeks , having mri when back to see what’s happening! Also contemplating a second opinion as there are ? Nagging me! Might have 2nd surgery/ more chemo options still, but it just doesn’t stop! Try hard not to let it take over ! I work very busy active anc really haven’t got time for this shit of a disease 👍🏻 Xx
What a nasty sneaky disease this is. I think you are right to consider a second opinion if you have lots of questions. It certainly won't do any harm asking for one. Do you mind me asking what surgery they are considering?
It’s not them it’s me saying I want second surgery possibly chemo wash in abdomen and some scraping! Two different doctors saying I have calcification on areas not cancer! Both said get another opinion! I know I have seeding in the peritoneum! But also have high calcium levels & granular annular! Both cause inflammation etc and under active thyroid! That’s all lol! GA! Also connected to cancer ! So yes I’m calling all the shots having a mri when back from holiday! Possibly seekingDNA texting and another cancer specialist! I’m not giving into this yet ! I will explore every opportunity so guys keep me up to date with any information! Seeking more info on peritoneum disease! God bless us all xxx
Hello <3 I understand that you might be worried and this is normal as it is something new for you. I have not experienced this, but I know that it is very early days and the ca125 levels can be indicative of other things too, and might just need a bit of time to adjust and settle down. We are all different too, so what happens in one person, may not happen for you, but at a different week.
Nicky xx
Thank you Nicky for your lovely reassuring reply. I'm sure that the next few weeks will show whether there is an upward trend. I think I am just over anxious as I really don't want to have to start chemo again so soon after the last time. I hope you are doing well at the moment xx
Hi, I see this is an old post but wondering how you are? I am in same boat high ca125 while on Niraparib and it's rising... My nurse said same thing all else looks good so don't really worry over it, however, easier said than done, I do worry a hell of a lot about it but try not too.
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