2nd line treatment

[Alfiepop]

Hello there, I was diagnosed with stage 4 High grade serous primary peritoneal cancer in January 2022 with spread to supraclavicular lymph node.

I’m hoping for some reassurance/advice.

After a total of 8 cycles of Carboplatin and Paclotaxil with Avastin added in part way through and attempted but unsuccessful surgery (due to extensive cancer ‘seeds’ on the peritoneum) I’ve never been NED.

I was commenced on Olaparib in November 2022 and the Avastin continues.

I’ve been experiencing some pelvic pains albeit infrequently for the past few weeks and my CA125 has risen from 137-163 over 6 weeks.

I’m due to see my oncologist next week and I’m frightened he’ll request a scan and what the results might show.

Has anyone else had a similar experience? I’m wondering what, if any options I might be offered if the maintenance therapy is stopped.

Thank you for reading this

[Loorunner]

Hi. I know its such a worrying time but your ca125 can fluctuate and I think your oncologist would want to see a consistent upward trend to it. As you also have some pain they might order a scan which I hope might give you some assurance they are looking into the cause. I had my 1st recurrence not long after my 1st chemo cycle but it has grown very slowly so I'm actually trying a trial 1st before more chemo to see if that makes the olaporib more successful. So there are options out there. I hope you have a good relationship with your team and can trust them to use their skill to suggest the best next move. Lots of love xx

[Alfiepop in reply to Loorunner]

Thanks so much for your reply. I’ve taken comfort from it.

On the whole Ive managed to keep a positive outlook but sometimes just feel overwhelmed but will keep on keeping on.

May I ask which trial you are taking part in?

[Loorunner in reply to Alfiepop]

I know how hard it is to keep positive all the time - even some of the time is a huge achievement. I'm on a trial called Study 4 at the Royal Marsden - I signed the papers for it yesterday - due to start at the beginning of April (as long as progression on my next scan isn't too agressive). Its Dr Banerjee's team at the Marsden that are leading on it.

[Alfiepop in reply to Loorunner]

Thanks for that and I wish you good results with the scan

[Alice77]

I was diagnosed with high grade serous primary peritoneal cancer in 2021 and have had 8 Carboplatin and Paclitaxel chemo cycles,a nine hour surgery and am now on 200mg per day Niraparib. I won't pretend it's been easy but it's important to keep positive. It is not possible to remove all traces of this cancer even with the ultra radical surgery I have had as microscopic particles will still be floating around in your peritoneum. On the other hand new treatments are emerging and I hope to stay around until they find one which works for me. I have scans every three months and monthly blood tests but try to see them as just routine. My CA125 has never been really low and it does fluctuate. I believe in enjoying life rather than worrying about what might happen and try not to let this cancer affect me psychologically . I really believe that staying positive and keeping as active as you can makes a difference, whatever is going on medically...just get on with life and you will find they will have some other way of keeping your cancer at bay whatever the outcome of your next CT scan. I hope all goes well for you.

[Alfiepop in reply to Alice77]

Thank you for your positivity, it’s helpful