My mum was supposed to have possibly 5-8 litres... - My Ovacome

My Ovacome

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My mum was supposed to have possibly 5-8 litres of fluid drained from her tumor today, but a scan showed no fluid. Is this bad?

britinak profile image
10 Replies

Hi Everyone, thank you for caring to read this.

My mum, 68, was diagnosed in Nov 2012, with they think stage 3 OVCA that has spread to the omentum? They have been unable to operate due to blood clots on the lungs. The plan was for chemo for 3 cycles, surgery, then another 3 cycles. There was some delay in finding evidence of CA in the fluid draws, before they could start chemo, but eventually they found CA125 levels of 1700.

She has had 2 cycles of combined drug chemo (I don't know which drugs), and after the first her CA125 levels had halved. She is due to start her next cycle on Tuesday, however she was admitted to hospital to have the fluid drained as she was so uncomfortable. They estimated 5-8 litres. However following a scan they discovered part of the tumour appeared to have gas/air in it, no fluid, and the rest was just solid mass.

So now the consultants want to meet to discuss treatment options. Does this mean chemo hasn't worked, and the tumour is spreading? It appears to be all in her torso, she looks 9 months pregnant. Has anyone had this experience? They are to some extent working in the dark I suppose due to being unable to biopsy the tumour. Is this bad news that it is not fluid as they thought? How might it change the plans?

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britinak
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10 Replies

Alas I think you have to wait for the experts. The drop in your mother's CA125 is a very good sign - that indicates she is responding to treatment, that the tumour is NOT spreading. I would hold onto that thought for the time being. OC can be extremely uncomfortable. Hopefully you will get some answers this week.

britinak profile image
britinak

Thank you, I will try to focus on the positive until we hear for certain.I live in America and it is so hard to be on a different time zone, and so far away. I'm hoping this forum will help me through this process, and in turn help me support my mum.

blue100 profile image
blue100

So sorry to hear about your Mum. You are right to focus on the positive for now. Your Mum has been doing well, and I am sure that surgery could be an option once the clots in the lungs have cleared. I had clots at diagnosis and had my surgery mid chemo, with the help of an IVC (Inferior vena cava) and continued blood thinners after. I was also very uncomfortable with ascites and even after it was drained I was uncomfortable for a long time. I thought there was more ascites, but when they went to do the procedure they found nothing. The nature of the disease unfortunately.

All the best, and do let us know what treatment options they decide.

Take care xx

britinak profile image
britinak in reply to blue100

Thank you so much, I'm sorry you are going through this also. Are you still having chemo? I'd like to hear a little more about your recovery from the surgery if you are able to share your experience?

I will definitely update, I'm really hoping they will know more tomorrow, but I know things rarely move that fast.

blue100 profile image
blue100

Britinak, I started chemo in Jan 2012, surgery in March and finished chemo in June. I will definitely send you a private message later.

Whippit profile image
Whippit

Dear Britinak

I'm afraid I can't offer any advice on your situation but it's good there are ladies who might have some understanding of what's going on and will be in touch to help.

I'm just sending my best wishes to you. It's hard standing on the side-lines feeling unable to help and I can't imagine how it feels to be so far away. Please keep on posting and we'll do our best to be a support for you as well as your Mum.

love Annie x

Hi Britinak

Well done for posting - lots of daughters and sisters seem to get support here. Your poor mum... The good thing is the CA 125 result which is a clear indicator that the chemo IS doing its work. The air in the tumour isn't something I have heard of before but OC is such a wayward disease I think literally anything is possible. The main bad side here is that because its not "routine" like ascites to drain, they can't relieve the pressure and pain. I would say keep the pressure on the docs to think about this and figure out if there is any way to do that but it may well be that bringing surgery forward for removal is the way forward - they are the experts on your mums condition and the only ones who can make that judgement though. Mid-chemo debulking after the first 3 cycles of chemo is a very common procedure - but you don't mention surgery for your mum so wondering what the original plan was?

Love Sue

xxx

nikki9 profile image
nikki9

Hi my tummy also looks like I am 9 months pregnant very uncomfortable. Had 4 litres drained but tummy still enormous. I agree unfortunately all part of this horrible disease. I was told it will take several doses of chemo to take down the fluid. All I can say is keep your chin up and try and stay positive hugs xx

wendydee profile image
wendydee

Hi! Like Annie, I don't know the answer to your question but just wanted to say that you've come to the right site for support. It must be hard to be so far away from your Mum at the moment, but it's great that you are able to support her in such a thoughtful way. Keep posting to let us know how things are going.

Love Wendy xx

britinak profile image
britinak

Thank you all for your kind words, and advice. Hopefully mum will have her debulking surgery after this next (3/6) round of chemo. She was discharged today and told that her chemo will be pushed back until next week. She was not sure why, she couldn't understand the consultant. However the CA125 has apparently decreased again and her bloodwork looked good, so this is encouraging, we are just confused as to the delay in chemo.

I will keep this updated, Suzi x

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