Just finished chemo and can feel ascites build up again!

Hi,I ve been reading the boards for a while and this is my first post.

I just feel so gutted at the moment.......diagnosed and had surgery Feb 11,carboplatin treatment which I responded well to only to have a recurrence 5 months later in Jan this year.

I had ascites which I went to hospital for and was drained before starting chemo again.Had 5x treosulfan/gemcitabine but plateaued so did not have no:6(ca125 still v high)........ascites build up again after 4 weeks so back to hospital for drain(which was a nightmare!) to start on 12 x weekly taxol.This chemo eventually dealt with the ascites so I did not need the pleurx drain that they thought i would and was doing great,CA125 were coming down nicely(mine have been vv high ie in the 1000's!)

I had my last treatment last week and was looking forward to having some time off as I feel that I have been on chemo forever but last friday I felt a bit of tummy discomfort and just sort of knew what it was.I have been hoping it was just bowel inflammation and it would go away(I did have diarroeah at the weekend) but it isn't going down.

I am due a CT scan on thursday and appt with onc next week so I will have to see what comes of this.I just feel so disappointed as I hoped for a little bit of remission.I am not sure that I can deal with any more chemo......psychologically that is,physically I seem to cope quite well,apart from having crap veins,it's the facing being punctured all the time that really gets to me.

What if I cannot have any more chemo?

Anyone have a pleurx drain fitted?(I feel they may suggest this)

Sorry for the long post

Many thanks for reading xxx

8 Replies

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  • Hi Muckypup,

    I am so sorry that you are having such a hard time...welcome to our community...you will get a lot of support on here...and I am sure there will be someone along soon that will answer your question...meanwhile I send you my love and best wishes and a smiley face to cheer you up love x G x :-) :-)

  • Hello Muckypup,

    Its good that you have joined our group, you will get lots of help and advice here.

    Hang on in there. Sorry that you have been having such a rough time. (((((hugs)))))

    Dont think about not having more chemo, you will drive yourself nuts, leave it to the

    hospital.

    Thinking of you.

    luv trish x x

  • I really do feel for you, with so many things going on right now it is difficult not to drive yourself crazy with so many thoughts. I know this is perfectly normal for us and its easier said than done to keep positive at times like this.

    But you will somehow find the stregnth to have more chemo if thats what the oncologist recommends, because we will fight for life as long as we are able too and that is the thing we do best.

    Make a long list of questions and worries for your oncologist next week - remember to leave nothing un said and hopefully you will get some positive feedback. Do you have a number where you can ring the oncologist nurse? Speak to someone about things before your appointment if the anxiety is up setting you.

    You can also call our ovacome nurse on here - they are there for us whenever we feel the need.

    Macmillon are also very special nurses who we can turn too - never feel isolated because there is so much support for us all when our going gets tough.

    Love with a gentle hug sent

    from Tina xxx

  • I do feel for what you are going through.. I have not had the pleasure in the way of remission either.. its can be just so tiring cant it! Sometimes it does all seem too much and you think why bother..enough is enough.. but then you read wise words from people on here like tina and you just know you have to go on and fight... Your team are not giving up so there is always hope :)

    I hope they are able to sort out the ascites soon , it just one more thing you could do without.

    Sending a big hug

    jules xx

  • Hi

    I had a pleurx drain fitted to my chest , cause I would get fluid building up there. Its ok when you get used to it and in the end my husband and I would drain it ourslves. I was lucky enough to get an operation done last february that stopped the fluid building up and the drain was able to be removed.

    I too have been on weekly taxol, 7 out of a possible 12 and felt exactly the same ,that there were days I just didnt feel I could carry on with the chemo. But I took a two week break and now I feel ready to fight again, as I am sure you will do when you have a bit of strength back. Also when your marker drops as mine did it gives you the boost you need to make it worthwhile.

    As for your poor veins, I had a port a cath fitted. Well recommend it. Discuss it with your nurses. I hope all this helps you.

    I wish you all the strength and lots of love

    Coco xx

  • Thank you,everyone xx

    I know that whatever is decided treatment wise I will do,because you have no choice really,the alternative is not an option!

    Tummy feels a little softer today(I think) so maybe I am imagining things being worse than they are........if that is the case I will be happy lol

    Kitjules......I thought I was young to be going through this,bless you sweetie xx

    Coco....good luck with the taxol,it's a grind but if I can do it so can you

    How long did you have the pleurx fitted for?

    Thanks for the advice re port a cath,though I don't know what it is!!

    Hugs,strength and kisses to all xxxx

  • Hi

    I had a pleurx drain fitted 4 weeks ago to deal with my ascites. I had been having to go into hospital every week for 10 weeks to have 5 or 6 litres removed. Most of the time I was in great discomfort and unable to eat moe than a few mouthfuls of food a day. Since having the drain fitted, with my husband's help, I've been able to remove a smaller amount of fluid every couple of days. It's very easy to use and a quick process. Personally i have felt a huge benefit in being able to manage this at home. I can drain before I get uncomfortable. my appetite has returned and I have much more energy. I've even been able to get back to doing some regular exercise, walking or cycling, and have no discomfort from the drain itself which is very unobtrusive. So don't be too averse to any suggestion you should have one fitted.

    I've just had my 4th (of 6) carboplatin treatment and if the amount of fluid building up has improved slightly but it doesn't look like it will clear up completely by the end of my treatment cycle the plan is to try to manage the ascites with the pleurx drain for as long as possible then probably have weekly taxol.

    Good luck with the scan. I'll be thinking of you.

    Catherine

    xx

  • My mum is having her ascites drained today. She had been having breathing difficulty for the last few days. Can she have chemo tomorrow after having her ascites drained today or does she need to wait till the cut cures . Appreciate any comments, as the thought of getting chemo delayed is just killing me... She is very tired at the moment and hopefully be better after the fluid drainage...

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