2 months on Olaparib and my CA125 has risen

[Chanterelle]

I started taking Olaparib about 2 months ago. The first month was pretty rough but the second month much better.

When I started Olaparib, my CA-125 was 19 about 5 weeks after my 6 rounds of chemo after being in remission for about 6 years. I responded really well to the chemo (I am BRAC2) and I was put on Olaparib around mid December once my neutraphils came back up to an acceptable level.

I was tested for complete blood count in December, January and February and the results were quite good. I did have COVID in late November but I healed nicely.

I went to get tested for my CA-125 level this morning (they test every three months for the CA-125 and monthly for the routine blood work that includes CBC) and it had gone up to 43. I feel fine, my stomach is very flat and I do have energy. I don't understand what is going on. The nurse in charge of the PARP program is sending me for a scan but said it wasn't urgent so it might be in a month or so. I am so scared that I cannot think straight. They are keeping me on PARPs for the moment and gave me the option to wait or go ahead with the scan. Of course, I am taking the scan even if I have no symptoms.

She said that it could be a one off and it might come back down. She said that they might find nothing on the scan as well but the doctor ordered one. I am petrified.

My bowell movements are great as well but I have a lot of issues with eating fiber as I find it makes my bowells feel funny when I lie down. I can't tolerate the same type of food that I used to eat. I have a bit of back ache, hemorrhoid's and my private parts itch. I don't know what is normal or not anymore because of the PARPS.

Can anyone share their experiences on Olaparib. I really need a boost as I feel that I am losing my mind.

[Katmal-UK]

Hi, I have been on Olaparib at full dose since January 2014. I started on the SOLO2 trial and am now on ROSY-O (rollover study as the trial finished about 4 years ago). For me it’s been so easy to be on. Yes, I’ve had a few side effects but they have been minimal and got better over time. My CA125 was 7 when I started and dropped to below 3 after 3-4 months where it’s stayed. It’s the third drug I’ve trialled and by far the easiest. It affects everyone differently. I was diagnosed 3b OC BRAC2 HGS in October 2007 and given a couple of years. There is a FB group on which I am an Admin and you may find it helpful. It’s Lynparza/Olaparib Support. Kathyx

[Chanterelle in reply to Katmal-UK]

Thanks for the information. I just joined the Facebook group. Just waiting to be approved. I am just very, very down today and I need some support.

[Katmal-UK in reply to Chanterelle]

You will find plenty there x you have been approved x

[Rankij11]

Hi Chanterelle,

Been on Olaparib 4.2 years now. I really don’t look at my ca125 results if I can help it as makes me unsettled as I think mine started about 25 , then went to 12 but it does wiggle around a bit , I always think if you’ve had a bug maybe ??? I’m going with they will say when they think it’s stopped working ?. Re being on the Olaparib Give yourself at least12 weeks to settle down , they can adjust dose if necessary. I have found I can live a very normal life - more than , really . I would say major symptom for me is the whoosh of tiredness that can come , but I’ve found can work through that. I take my second dose just before bedtime , it helps . My gut has been odd since chemo, don’t think Olaparib affects it .

Hope you feel better soon

And Olaparib works it’s magic

Jennifer