Acities and recurrence

[Narna1]

hello fellow troopers,

I just returned home from hospital having had an acities drain following my recurrence at the end of October. (Diagnosed Nov 2021 HGSOC stage 3c)

I recurred within 6 months of my initial treatment + surgery.

What I was wondering was, why did the acities fluid build up so quickly?

I had a CT scan on 16Dec showing hardly any fluid them bam, on 31st Dec I was in A&E again with 3 litres of fluid drained off. Quite a painful experience.

Has anyone else had a rapid build up of fluid and any ideas what brings it on so quickly? Any advice on how to minimise fluid build up?

Im feeling exhausted and drained ( in more ways than 1)!

Hope everyone out there had a good holiday time with family and friends x

[Lyndy2]

Oh that’s rubbish for you Narna1. I hope you feel better soon.

I wonder if they struggle to see some things on CT scans…I know that it can be a bit hit and miss when it’s recurrence rather than first diagnosis. You could chat to your CNS about how to get rapid action when you feel it coming on without having to go through A and E? xx

[Narna1 in reply to Lyndy2]

yes, good advice. I think the timing was particularly difficult it being new year and public holidays. But I will be on it more quickly next time, thank you x

[mrstadpole]

I have experienced this and it is really painful.On my first reoccurrence the fluid built up quickly.They did drain it but they explained that the fluid builds up in pockets so it may not be that simple when draining.I felt much better and it disappeared after more chemo.Hope you feel better soon x

[Narna1 in reply to mrstadpole]

Thanks for your reply. Do you mind asking, what chemo drugs did you have on the second line?

[mrstadpole in reply to Narna1]

I had caelyx/carbo. I only had 4 infusions out of six, as the hospital said that it was too risky for me to come into the hospital for final two due to Covid.I then went onto Olaparib (parp) and that was two and a half years ago.

[Narna1 in reply to mrstadpole]

Ahh, it sounds like the PARPs are doing their job thankfully. I hope you stay well. Best of luck x

[Newbery3]

I have no advice but I'm glad you've had some off our sisters here, hope you start to feel better soon! Happy healthy new year xxx

[RoseMS]

i had ascites drained 3 times prior to first line chemo. The initial dose of chemo dried any ascites up and I didnt need draining again. I would imagine once you start chemo (hopefully asap) no further drains will be required. Wore you given any maintenance treatment (Avastin, PARPs) after your first chemo? Good luck, hopefully it will be sorted and gone soon. X

[Narna1 in reply to RoseMS]

thanks for your reply.

I was given maintenance Niraparib after NED in July but still recurred after 4 months.

I had been on a 2 week drug holiday over Christmas which I thought might have caused the sudden acities but the doctor said this was unlikely. Who knows? It’s a mystery!

[Rlenesue]

When you get a recurrence ascites tends to build up fast

[Narna1 in reply to Rlenesue]

I had it drained 3 days ago and it feels like it’s coming back already 😩

[Smileeveryday2021]

Hello Narnia1

Similar situation to you. Ascites has built up very quickly - just suddenly seems to “go”.

Had this occur twice . I was discharged last night after A and E admitted me at weekend. Had to wait till Weds until it could be done.

Whilst in they gave me frusamide to ease things- which did work a bit to reduce discomfort.

Weigh yourself everyday before brekkie and naked/same clothes. Plus measure the narrowest part of your waist each morning. Monitor the situation and alert your team asap

It’s such a relief to get it out isn’t it!

[Narna1 in reply to Smileeveryday2021]

hello Smile, thanks for your useful reply. I do weigh myself and keep a diary but I will also measure. Good advice. Not heard of frusimide but will note that. I have a very tender belly since it was drained. Feels so bruised and battered. It was very sore when the nurse pulled the tube out, there’s quite a bit of pain in that area too. It’s not a pleasant procedure but I agree, better out than in!

[Smileeveryday2021 in reply to Narna1]

..yes I identify with the bruised and battered feeling. I also find my belly feels taught down the front and it seems to take a few days to feel you are standing up straight again. Today feels better than yesterday 😁

[Narna1 in reply to Smileeveryday2021]

Amazing! That is SO helpful as what you describe is the exact feeling I have had and I was getting really worried. I feel much better today. I went swimming and met with some friends. Power on 🙏