Nariparib question

[Mintybiscuit]

Hi

I recently posted about my CA125 increasing to 23. Over the last few weeks I’ve been feeling pretty ill and this is gradually worsening. The symptoms are headaches, nausea, diarrhoea, aches, hot flashes. It is particularly bad at night so I’m not sleeping. TBH it feels like I did after chemo (and before being diagnosed with OC).

I have been taking Nariparib since November and am wondering if the side effects can accumulate and whether I am not tolerating it anymore. Otherwise it could be that my cancer is recurring. But these feel like very bad symptoms if my CA125 is still around 23.

Has anyone else had a similar experience on Nariparib? …or symptoms like this so early on in a recurrence? It is also possible that Nariparib has stopped working for me hence the rise in CA125 ( too early to tell if this is the case).

[DianaPrince_]

Minty, the only reliable answers will be from your doctor and a scan.

You're having symptoms that could be signs of a recurrence or that the side effects of Nariparib have culminated and you're tolerating it less.

Your CA125 is climbing slowly but is still in the normal range. This might be due to a whole host of other factors.

The torture is the not knowing. The lack of answers so you can deal with one scenario or other. I know I've been there.

This could be nothing.

This could be the side effects from Nariparib and you need a dose reduction or break.

Or yes, this could be the start of a recurrence.

Get to your doctor get more bloods and scan.

This is what I know from my own journey, that may or may or may not be relevant to yours.

After I was on a parp for a year when I started having side effects that could have pointed to a recurrence. Turns out my RBC was incredibly low and needed a few blood transfusions and dose reduction.

Later for a year my previously very low ca125 marker of 6, began to climb very slowly 6, 8, 12, 13, 14, 22...

All my scans were clear for a year.

Then my CA125 jumped to 70, then 200. A scan showed a low-volume recurrence and I'm now on treatment.

You won't find definitive answers here. Please get to your doctor and get some tests done.

Good luck x

[Mintybiscuit in reply to DianaPrince_]

DianaPrince, yes, I’m not very good at the not knowing so desperately looking for explanations. I’m having a repeat blood test in 3 weeks and possible scan depending on the results . Hope you’re treatment is going okay x

[DianaPrince_ in reply to Mintybiscuit]

None of us are. It's the worst bit. But as soon as you know, one way or another, it gets better I promise.

It's the not knowing, when my mind constantly swings between hope and despair, best case and worst case, that is torture, for me anyway.

You're not alone.

[Hockeymom52]

I too have been on nariparib since November and started feeling the same as you in June. My CA125 was rising as well went from 10,13,25,40. Had CT scan showed nothing. Ca125 kept rising was 111 still scan showed nothing. Last month went up to 400 had Ct scan and showed a small amount of ascites in pelvic area. So now my oncologist is almost sure it’s recurring so I am going for ultrasound this week as well as PET scan. I am trusting my doctors as they have been on top of this. I suggest you talk to your doctors as they know best. My doctor told me that when the CA125 starts rising nothing will show on a scan until months later and that’s when treatment starts again. Hang in there and trust your doctors. Wishing you the best xx

[Mintybiscuit]

Thanks for the information. I’m trying to feel hopeful but it sounds like what is happening to me is a fairly common experience . It’s hard not to think the worst when you are feeling ill. Wishing you well xx