Responding to a progressively increasing CA125

[Donnie21]

Hi all,

Mum completed first line treatment for HGSOC last year (6 cycles carbo/taxol followed by optimal debulking) and was NED as of last July. She is BRIP1 positive but HRD negative and has been on Niraprib at reduced dose since last September. Since then her CA125 has progressively increased from 8 at is lowest to 12, 17, 21 and most recently 27. Whilst still in the normal range the trend is upwards. Whilst up and down, generally speaking she is well and getting on with life but we are concerned about the trajectory of her markers and what the appropriate response at the right time may be. This is partly influenced by our having moved house lately and her care being transferred to a new trust whom we don’t know and consequently don’t have the same degree of confidence in.

So I am curious to know what peoples experiences have been and whether they have any advice. I understand, if relevant, increases in CA125 often precede anything showing on a scan by months and a watch and wait approach is often taken until something becomes evident or symptoms present at which point further treatment/ surgery maybe offered depending upon the circumstances. Is there any benefit in trying to access say a PET scan sooner to try and get ahead of anything? Or do we just put our faith in the system and cross our fingers understanding that living well now is the most important thing?

Id welcome your thoughts and apologise for the difficult nature of my question.

with thanks and all best wishes,

Don

[Lyndy2]

Hi Donnie21,

It’s a good question with lots of different answers!

After my first line they noticed something on a scan at around 2 years later. No treatment was offered and I carried on with my life for 2.5 more years until..blam! It became symptomatic just as covid hit.

It seems to me that Doctors don’t always know exactly where it is or what it’s doing on recurrence.

In general I think it’s the patients choice. Some of us want to get on with treatment, others are happy to let things go until they are ready.

Talk to the new team, it would be a good way to get to know them.

Best of luck to you and your Mum xx

[Donnie21 in reply to Lyndy2]

Thanks for sharing your experience and thoughts Lyndy, much appreciated. We have made an appt with Mums consultant for next week and will see what they have to say. Have a good weekend!

[Frannyfrank52]

am going through that right now. Oc stage 4. Off chemo in June on parp lynparza since august brip1. Ca125 raising 17,21,35 , 54 …slowly now doubled onc wanted me to wait two months see if it continues then maybe Pet scan. I waited two weeks went up another 9 to 54 points and now a pet scan this week. I would not wait. Btw my Ct scan was good this Jan

[Donnie21]

Thanks for your reply and thoughts. I’m sorry you are in this situation as well. We’ll see what Mums consultant has to say this week. The PET seems like a good way forwards, I hope it is helpful. Out of curiously are you HRD+ as well as BRIP1? How was your response to first line tx? Bw, D.

[Frannyfrank52]

I am not HRD positive First line treatment was good. Then Avastin. For two years cancer free. Normal ca125’s. Then first occurrence and put on carboplatin and doxil. With mixed results. Then the parp Im on now

[Donnie21 in reply to Frannyfrank52]

thanks for your reply Franny. Curious that you too are HRD negative despite being BRIP1 positive, our consultant inferred the two were associated but it would seem not always to be the case. Good luck with your scan