Update on pleurix drain for ascities

[Kakabud]

So ladies just giving an update for you all. For those of you who don't know my mum is 59 diagnosed in Jan 2018 ovarian cancer 4b. They give 3 chemos and the disease has increased and we have been told there is nothing more they can do. Devastated! The ascities is building up alot so with chemo not working she had a permanent drain put in her tummy. She was ensured it would be fine and it was just a general anisetic. Well she hates it! The procedure it self was awful she should have been knocked out for it. She ended up 11 days in hospital. Severe constipation after it for 10 days a kidney infection and a TIA stroke. Plus she is still very aware of it in her body. She really doesnt even feel relief from the fluid been taking off. She has loss alot of weight now with nil by mouth etc. So awful seeing her so thin. She eventually got out of hospital yesterday but is so weak. She has syringe driver on for anti sickess and now is on oramorph. They said the omentum has increased she feels so uncomfortable and said just like a brick in her stomach. So awful seeing her in such discomfort and pain. Have any of you had similar pain with omentum disease? I got her a v pillow which she said helped as she can only lie on her back now. I don't think any of us that don't have the disease can ever quite understand what it is like. But as family we will be there with you all every step of this awful journey😢

[Maus123]

So sorry to hear about your mum's discomfort with the illness, Kakabud. It sounds likeher quality of life isn't great right now. When I read about her, I can't help but wonder will it be similar for me, when I get to the 'no treatment left' point?

A couple of questions come to mind:

Could she maybe have the ascites manually drained every couple of days e.g. by a nurse coming by? That way, she could get rid of the permanent drain. Manual draining is quite low impact. I had it done a few times and felt no discomfort.

If she can't bear the syringe driver, could she receive IV-based anti-emetics instead? For me, those tend to help better than oral pills. The only drawback is that you have to be in a hospital for it, unless a nurse could administer it at home?

Has she considered checking into a hospice where they might have even better options to control her pain and discomfort? Once she's stabilized, she can check out again and stay home

Hope she gets more comfortable soon. Maus

[Lindaura]

Your mom seems too young to be going through this in this way. I think you need a second opinion. There are more kinds of Chemo and surgery, too, but she needs to be strong enough for all this and you need to be strong enough and persistent enough to help her.

Maus is right about the hospice as a place to stabilise her, and right about the drain.

If Chemo had worked, the Ascites would have cleared by itself and given enormous relief.

I had that anti-nausea syringe driver and it was awful, too. Try a prescription for Cyclazine (merizine in the USA). Tiny pills taken by mouth whenever you need them. They saved me.

Meanwhile, try to get her to eat whatever you can think of that she can tolerate. Could be Cheerios or rice crispies or chocolate pudding, or Thai food!! Anything.

But get a second opinion.

Best wishes,

Laura

[antifer1234 in reply to Lindaura]

I am so sorry to hear about you mum who is so young. It does all sound Very negative from the onc. I would definitely keep pushing and get a second opinion. At the beginning I got an infection and lost a lot of weight. I had protein drinks small bottles twice a day and anything else I could get down me, nuts, biscuits, chocolate etc. Your mum must get weight back on. Watch the cyclozine it sent me away with the fairies!!! Take control of you mothers care, my daughters were amazing I would not be here now but for them.

Your mother should have lots of options open to her, I think you need a better team for her. Hospice help sounds a good idea as well.

Best of luck, keep strong your mum needs that strength from you.

Hugs for you both.

Anthea

[Luci22]

Oh goodness , that is upsetting to hear what your mom is going though. I really wonder as well why is there no other up option suggested. How about the second opinion? As for the eating, I want to just suggest a company I found online which is called Functional Formularies, and it's all liquid food full of high nutrition. Maybe it can help her if eating meals isn't an option portion right now. One of the products is called Liquid Hope. She created this at the start in response to her father's feeding needs while in hospital. May be worth a look? Maybe there are other ones out there but I just know of this. They are in Ohio. Here's a quick intro from the developer:

"As a Professional chef working with organic whole foods my entire career I felt perfectly equipped to make a more nutritious feeding tube formula. So, I started figuring out a formula that would not only address the brain injury but also his other secondary complications. This began my immersion into food as medicine."

Site:

functionalformularies.com/

I really hope your mom can get some good relief soon. She's lucky to have you by her side. I know how tough it is. Hang in there.

[BeeWild]

Did you ever get the second opinion for your mum Kakabud? I really would be doing that right now!

Have they also referred her to the hospice as they are the experts at managing pain and alleviating symptoms? She should not be being left so distressed and uncomfortable and it must be awful for you all too x

As far as food is concerned, I had ascites and no appetite before and after my surgery (had 6 litres drained) they gave me fortisip drinks 3-4 a day and my GP prescribed them when I came home too!

If you can’t get these in NI then but complan at the supermarket.

Here is a link off google to advice on how to fortify her food tongive her extra protein and calories without her having to eat extra portions x

psnc.org.uk/wolverhampton-c...

I really do hope you get some help in getting your mums pain and symptoms better controlled xx I really do think there are options still open to her too and you should try to get to either Marsden or Christie xx

Take care xx