? Recurrence

Hi all not been on for a while but hope everyone is doing ok and those not I am thinking of you. I thought I may not be here last Xmas but I am writing this from Portugal and already been to California to see my 6 th grandchild who was born in March. However I am experiencing some recurrence symptoms again and have a scan at the end of the month. I am very bloated after eating and feel I have fluid build up again although the sun is causing a lot of oedema in my legs particularly left one. I finished 4th line chemo in March and wondered what my next option might be. Not getting much remission since diagnosis in 2012. I have had Carboplatin then Carboplatin & Taxol then Cayelex 2 Months & didn't work kept needing drained ) then Gemcitbane which worked wonders with Carboplatin. Anyway sorry to go on but just wondered if anyone similar . Thanks


6 Replies

  • Hi Sue. Congratulations on the birth of your 6th grandchild, and well done you for getting on with life and travelling.

    I'm in my first recurrence but have not required treatment for it as yet and am hoping and prying that I won't for a long time yet!

    I'm sorry I can't answer your questions but I'm sure some of the other ladies will do. I just want to wish you well and hope that you will get some respite from your next treatment plan.

    Ann xo

  • Thanks Ann I'm not sure many will have an answer but I think it helps just to be able to write and see what variations in treatment there might be. Glad you are well just now it's always good to hear. There are a few Irish golfers staying in our hotel but we haven't been paired up with any as yet. I do love the accent. Keep enjoying whatever you are managing to do.

    Sue x

  • Congratulations on 6th grandchild and still being here of course. Think I am similar except for the Gem. Diagnosed in 2014, had Carboplatin & Taxol and debulking recurrence in March had 2 Caelyx but after seeking second opinion was put on Rotterdam Regime. It is very, very tough. Just finished 6 weekly infusions of Cisplatin with a 2 wk break for body to recover. Having a break now and DO I NEED IT. I feel like I am dragging myself about weighted down. I shall have a scan tomorrow. I have poor prognosis of 12 months but not looking at it as a cut-off point. I shall follow on with Epotoside Tablets daily for 3wks plus 1 wk break and then who knows maybe furthert tablets depending upon outcome of scan. I know how you feel, I have just never felt well since my first diagnosis.

  • Thank you for reply and I do so hope you get a good result from your scan. I am lucky in a way that I do seem to get a great 3 months after I finish treatment, then I start to get symptoms again. It's also not too bad on the chemo when it works as I feel safer as I know it is alleviating the symptoms. I hope you are getting plenty of good support and glad to hear you are trying to be positive. I just keep hoping they will find some wonder drug soon. Take care. Sue x

  • Hi Sue. I'm probably not much help to you but just a couple of thoughts: you say that Caelyx didn't work (not sure what you mean by drain - maybe fluid build-up needed to be drained off?). I have a friend who (like me) had 6 months of Carbo/Caelyx. At the end of it, she still had some active tumours. She was told that Caelyx takes longer to work & so she's been kept on the Caelyx (only) at the same dosage. Wondering if this is an option for you; or could you continue on the Carbo/Gem if that was working well? I know it used to be said that 6 months was all you could have of chemo treatment for 2 years but that seems to have been "loosened". Best wishes. Pauline.

  • Thanks Pauline that is interesting. My onc said I can only go back on same chemo if I am more than 6 months in remission and I only finished treatment in March. I have a scan next week and then a discussion to see what happens next. My CA125 is increasing quite quickly which is usually quite a definate sign that it's back for me. Hope you are doing ok. Sue x

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