I had my last second line chemo middle of February and when I saw my oncologist last week she's booked me in for a scan and says I'll need to start chemo again which is a bit of a bummer as I was hoping for a bit longer!! l'I've got fluid but it is continually changing, sometimes my stomach is really distended and hard and at other times it's not quite so bad. I feel I need to keep trying to take deep breaths and when I do I have real discomfort particularly on the left hand side. I was wondering at what stage can the fluid be drained off - do you have to wait until the stomach is really distended all the time?

I'll be on Topotecan this time - any info on the side effects of this would be appreciated. I was told only one in ten loses their hair - is this right?

Thanks. Cathy xx

6 Replies

  • Hi Cathy

    I am sorry I havn't any words of wisdom,or advice for you... but it is funny... you have been on my mind ..I was thinking I hadn't seen your name on any comments lately... the last time was end of may.. I was away then so missed it... I am so sorry you need to go on chemo again... I am thinking of you and send you my best wishes love x G x :-)

  • Sorry to hear this Cathy. My thoughts are with you.

    Chris x

  • Hi Cathy

    Sorry to hear you've got to go through it again. I have had Topotecan and I didn't lose any hair. Will you be having the treatment weekly?

    I am sure the scan will reveal how much fluid you have in your abdomen and whether it should be drained. I've had that done too and its lovely leaving hospital with a lighter stomach. More recently what they thought was fluid turned out to be a lazy intestine that was filled with gas - no they didn't puncture me like a balloon but I almost wished they had to provide some immediate relief!! Anyway its going down gradually of its own accord. You will get through it.

    Thinking of you.


  • Thanks ladies for your good wishes.

    Sarah, that's good to know that you didn't lose any hair - mine hasn't actually properly returned yet, I'm still wearing my wig all the time so it would be great if I didn't have that as well. Mind you, I wish my actual hair was as good as my wig - they make you look so good, even if they're a bit hot now it's got a bit warmer.

    I believe I'm going to have the Topotecan five days in a row and then off for three weeks. I actually sometimes wonder if some of the problem is gas as well as fluid because I'm having a lot of 'trumping' out through my stoma just now and am forever having to open the stoma bag to let out air! Also I don't understand how my stomach can go up and down so much, it was pretty painful last night if I took a deeper breath and yet this morning I'm okay even though I'm still swollen. Strange!

    Thanks again.

    Cathy xx

  • Hi Cathy

    I know what you mean about your wig... My hair is still too short....and I prefer my wig and hate my hair now.. so I still wear my wig when I go out.. Best wishes x G x :-)

  • Hi Gwyn

    I'm the same - on the one hand I'm desperate for my hair to grow to a length where I won't need the wig at all but I'm wondering what it's going to come in like. At the moment I have what I call my Julius Caesar hairstyle - so not a good look! The last time it came in I was pretty pleased because it had a curl in it for the first time in my life - I've always had that soft, floppy hair that's difficult to style.( I'm not ashamed to admit that I loved my 80s long, shaggy, perm!). Unfortunately it didn't last as it got a bit longer the curl disappeared. Maybe this time I'll be lucky and the curl will stay. Here's hoping.

    Love Cathy xx

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