Ca125 question

[Joanie12]

Hi all, don't post often but read all posts and send good wishes to all with this crappy disease. A question, I'm on niraparib for past 4 months and doing really well, that aside this last few days I have urgency to open bowels (sorry tmi) and I've got it in my head that things are going arie. In have metre in liver and was wondering if ca125 rises if liver mets flare up? Last scan 4 months ago was reported as excellent. Wishing you all well and to lindaura, I follow your posts as you seem to be similar to me. Good luck and enjoy the sunshine......at last! Xx

[Lindaura]

Dear Joanne,

Totally understand. I am about to post similarly for a catch up.

It’s early days in our treatment, and we are naturally hypersensitive.

When is your next meet up with Oncologist.

Ask about your CA-125, as most seem reluctant to give this info out and like me, you can request a scan.

I know it won’t help, but try not to worry!

Hugs,

Laura

[Joanie12 in reply to Lindaura]

Hi laura, thanks for your input. Im due to see onc in 3 weeks so yes I'll mention my bowel problem to him. My last ca125 was 12 but they do not like you asking for this but I did! Other than the bowels I am doing really good, bp increased so now non meds for this but other than this I feel "normal" if there is any such feeling with this diagnosis! Just mowed my daughters lawn whilst she's at work and things like this give me a boost as it tells me I am doing OK (hopefully)

Sorry to hear about your rising ca125 but have been told that this can happen and then go down again. Regarding the thirst, I'm the same forever drinking but not peeing any more, funny isn't it! Best wishes for your scan and hope after z rest you will get your mojo back. Kind regards and beast wishes, joanie

[Katmal-UK]

Hi Joannie. I'm not on Niraparib but have been on Olaparib for the past 5.5 years. Urgency to open bowels is a side effect that I have had more or less right from the beginning, some days worse than others and is affected by what I eat. Might jbe worth trying to remember what you ate over the last few days which might have had an impact. My 'trigger' is salad, onions, spicy foods. It's also worth mentioning to your onc but hopefully it's nothing untoward. xx Good Luck xx Kathy

[Joanie12 in reply to Katmal-UK]

Hi Kathy, thank you for your reply, its good to know that others non parps have this problem so I suppose we justhave to put up with it. Must add that I have had salad for a couple of days so will have to avoid it, which is something I love, along with chocolate!! Also got a thing for liquorice at moment, don't know why but that stimulates the bowels also!! You are an inspiration, 5.5 years and still going, you give me great hope, long may it continue for you!! I often look back at your old posts when I am down, ikt helps to pick me up. Kind regards and good luck! Joanie

[Caroles1]

Hi ladies,

I have an urgency to open bowels, am not on anything and am coming up to 5 years NED.

I had a bowel surgeon in place on my op since they thought it might be bowel cancer, it wasn’t, but I was told it could be years, or not ever they go back to normal if meddled with 😬

On the other hand, being regular is better than being constipated since it can lead to sepsis and other problems.

I am sure you will get better advise from the ladies on your medication,

Best wishes,

Carole x

[Joanie12 in reply to Caroles1]

Thank you carol, yes they suspected bowel cancer was my problem too and it was a bowel surgeon who operated taking part of bowel or intestine! Yes would not like to be constipated, had no problem this way but just seem looser for last few weeks. Anyway good luck to you and 5 years Ned is fabulous, long may it continue. Good luck joanie

[LittleSan]

I've abandoned following my ca125 and it's really liberating. Mine now goes up to five figures and is down by half to thousands so I just get told general trends. How I feel each day and what I can do with it, is the main thing that matters to me. My health is improving whilst on chemo and I'm letting my team worry about my numbers because I have no control over it. If I did, it would be a very different story. It's taken me many years to get to this level of thinking. So although I'm at the late stage of late stage, the freedom from stressing over ca125 is a good place to be.

Warmest wishes to you Joanie. Xx

[Joanie12 in reply to LittleSan]

Hi Sandra thanks for your reply, yes you are so right. Never heard of ca125 til I got this bloody disease then hang onto the numbers like a moron!! In shall try your tactic and ignore them, I know the team will act if and when it rises so I'll calm down now. I hope you are doing ok on your trial and things are going well. Good luck, joanie