Home from hospital for weekend break

Went into hospital on Tuesday with huge tummy for drain. Hospital took 5 and half litres of ffluid, but tummy still big, onc said until he looks at scan could be some air or cancer. Have still been sick not able to eat much and some tummy pain. Has anybody else experienced this? Go back into hospital Monday where they hope to start caelyx. This is my fourth try at a drug and I feel like giving up hope just want to feel human again. I know of you ladies have been through so much. Hugs to you all xx

18 Replies

  • Poor Nikki,

    I feel so sorry for you. It is no joke to feel 10 months pregnant, and then for the drain not to have cleared it all must be very disappointing. At least your onc looked at the results when I go in for that I don't see my oncologist for dust. The specialist nurse came over once, but that was it! At least they are not waiting, they are getting on with treatment, so chin up - there must be something that will sort you out. I've had 7 treatments now, so don't give up hope just yet. There is plenty more to try.

    Love n hugs (((((()))))))


  • Thank you viv you are so brave was you impressed with royal marsden? Xx

  • Dear Nikki

    Please don't give up hope. Enjoy being at home for the weekend. I shall be starting Caelyx as a second line therapy. Now seems to have overtaken Taxol as the chemo of choice.

    I haven't had ascites but I have a friend who has and I know it's really uncomfortable and can make you feel very queasy. My friend had a drain but it wasn't all removed as the staff explained that the fluid was in pockets that were difficult to get to.

    I hope you have a good rest this weekend. I can never sleep properly in hospitals. Let's hope Monday brings better news and good cheer.

    with love and hugs lovely lady. xxxxx Annie

  • Nothing of experience to offer; just hopes for a resolution of the enlargement, and success with the caelyx.

    Thinking of you,


  • Hi Nikki,

    ascites is horrible, I have had to have parasentises 3 times. Last one was 3wks ago and it wasn't all drained but enough to ease the pressure and make me more comfortable. The 1st time I had 13ltrs drained, then 5 1/2 a few weeks later. Last time was 4. I can still feel there is plenty left but as they can only go in once they hope to get the largest pocket.

    I started Caelyx as 2nd line last month. Must admit it floored me but I'm sure that was because of the ascites. Had 2nd cycle on Thurs and so far so good, not suffering like last month. I have a lot of heartburn but otherwise fine.

    Don't give up, we all get days when we feel like throwing in the towel but thank goodness it doesn't last long and we are back fighting again.

    I hope Monday brings better things, at least they are on your case.

    Best wishes Chris xx

  • Thank you has the caelyx reduced you asciites ?

  • It hasn't yet, but hopefully once it kicks in it will make a difference. I had a year without ascites when on Carbo/Taxol so I am hoping the new chemo will have a similar effect. I have been told Caelyx is a bit slower to take affect that some of the others and will have CT scan after 4th cycle.

    love Chris xx

  • Hi there .. Ascites horrid. It made me feel so ill I was ready to throw in the towel but the relief .. when it was drained .. was enormous. My own ascites was in pockets so not all was drained. When my ascites becomes impossible, I hope to have it partially drained then drugs .. in the not too far future. Well, hang in there, you're not alone. I do know what ascites feels like. It's a very hard place but very hard places are where we leap from. Take very good care. X

  • Oh, Nikki, I'm sorry for you.

    Ascites is a sh***. When my cancer was diagnosed last year I had 2 liters of ascites drained during the surgery. After that, no more. But I remember how uncomfortable it was.

    Don´t give up. After one or two rounds of Caelyx your belly will be sleeker and you with more strengh to continue with treatment.



  • Hi Nikki

    I had ascites drained a week before starting chemo. It did get rid of the worst of it but not all. I got married a three days befoe starting the chemo and my tummy does show in the photos. Typical. Most brides slim down for their wedding day but I had to get a dress three sizes bigger. However, the chemo soon sorted it out and after the third cycle I was back to normal.

    Ascites are just horrible. But it is great once they've gone. Wishing you the best of luck with Caelyx and looking forward to hearing that it has got rid of the bump.

  • Good luck with your treatment, although i,ve never had ascites as I seem to get fluid on the lung (plueral effusion) the Caelyx did a good job in reducing my disease for a while anyway. Love Sandra xx

  • Hope you enjoy your time off. I read the story of a woman who spent more than two years on various different chemos before she found one that worked and put her into remission. Hope you find your magic potion v. soon. Cx

  • Hello Nikki,

    I'm so lucky that I've never had ascites but they sound awful. I'm so sorry that you're having a rotten time. I just want to send my love and some positive wishes. Hopefully you'll be feeling better soon, try and keep your chin up,

    Best wishes, Solange x

  • Dear Nikki

    I may have told you all of this before in which case stop reading....

    I was on a trial drug at the Marsden Sutton. When it stopped working last November I had an enormous tummy, couldn't eat, generally not well. Went into the Marsden to have my ascities drained. From memory it was about 6/7 litres and then the first dose of carbo/gem. My tummy didn't go down either and a couple of days after discharge I was back in my local hospital with a bowel obstruction. That cleared but still my tummy didn't go down immediately only after a week or so. I was very thin by this stage but have eaten like a horse ever since.

    You will feel normal again. Please don't give up hope - I don't think that's allowed at the Marsden anyway! Like Viv I am on chemo 7 now. Its worth the effort.

    Lots of love


  • Don't give up hope Nikki - I know it is easy to say and hard to do when everything seems to be against you, but sometimes hope is all we have and you have more than that - a good team and a lot of fight in you.

    I am sending lots of love your way and big hugs.

    Amanda xxxx

  • Hi Nikki

    I hope that you are feeling the benefit of being in your own home for the weekend.

    Please try to not give up hope , there are many bumps in the road whilst having chemo and many people get through bad times to experience better times.

    Big cyber hugs to you

    Charlie xxx

  • Hi Nikki. I had 11 litres drained before my initial surgery. It's awful and frustrating and feels so unfair. Don't give up hope though. Chemo sorted mine. Hugs from Dublin xxx Trish

  • Hi Nikki - I've not had fluid drained but obviously many of the ladies have. I hope they can get you sorted and more comfortable. Don't give up, if you feel down, just log on here again and we're all here for you.

    Love Annette xxx

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