I got my scan results on Monday

Yes, Hi Girls, I have been feeling so strange I couldn't post on here! it was not good news on Monday, it is all up and running and has finally got a grip on my liver and lungs and stomach. I think my onc was suprised when I asked what he could do for me, but he has offered Topotecan daily for 5 days every 3 weeks. I am waiting for the appointment in the post, I don't have much hope at the moment, the fight comes back in short bursts, I am in a lot of pain so I am using Oraphorm and I saw my Macmillan nurse on Tuesday she recommends Mst so will order that for me. She was very good and she will be happy to speak to my son as well, I hope I last till I can start the Totpotecan and looking forward to hearing any experiences on here with it, love to You all Diane xxx :)

23 Replies

  • Dear Diane,

    I've been thinking of you a lot and wondering how everything is going. I'm so sorry to hear the news wasn't what we all hoped for.

    It does sound as though you're getting good support there - particularly if the Mac nurse will explain what is going on to your son.

    I'm hoping you can get on to the Topotecan very soon and that you'll be feeling more comfortable.

    I'm sending all the love I can and a hug. xxxx Annie

  • Thanks Anne, lovely to hear from you, thanks for being there Love Diane xxx

  • Whatever you do don't go away - so we can keep on being here for you.

    love Annie xxx

  • Thank you Annie, thank you all of you love Diane xxx

  • Hi Diane

    So sorry you are having to go through this. I do hope they will get the pain under control very soon. There are other ladies on here who are on Topetecan and hopefully they will chime in. Hopefully it will work really well for you.

    Monique x

  • Dear Diane

    So sorry to hear this news. I do hope they can get the pain under control and that the Topetecan is effective.

    Send hugs and good wishes

    Linda xxx

  • Dear Diane

    Sorry to hear your news but try and stay strong and get on the Topetecan.

    Sending you lots of hugs ((((xx))))

    Love Angie xx

  • Hello Daisy, you probably wont have heard of me but my heart went out to you when I read your blog. Its the news no one wants spelt out to us and I empathise. Your Onc hasn't given up on you and hopefully after a little period of adjustment, your hope and fight will return. We are all with you.


  • Hi Diane

    Sorry to hear that things are not as we would wish them to be for you yet. It sounds as if you are getting some good support and we'll be here for you whenever you want a friendly ear (I know, I know, not exactly an ear, but ......) I'm sure we're all praying the Topetecan will do the job and help you to get your fight back. Stay strong, sending a big hug (((xxx))) :-)

    Love Wendy xx

  • Sorry to hear your news Diane. Hope you get your pain control sorted soon so that you have strength to fight. As Jennifer said your oncologist thinks the topetecan is worth a shot and they don't make these decisions lightly.Glad your nurse specialist is on board, they can be such a source of support physically and emotionally. My thoughts are with you.

    Luv'n'hugs Suex

  • Thank you for all the encouragement everybody, you are all so kind and supportive on here, it is good not to feel so alone with it all, love Diane xxx

  • Dear Diane!

    My heart and soul are with you! If there is anything I can do let me know! You are obviously in my sort of age range and I empathise with how you feel! Good luck with the topcetepan! I hope that the side effects are tolerable!

    Thinking of you!



  • Hi Diane,

    I am sorry things are rough for you at the moment. I am currently on Topetecan. I have it once a week for three weeks then one week off. I am half way through my four month regime.

    I am waiting for this months ca125 results but last month it dropped by 100 so it is working.

    I have been getting pain in my back but my onc says it maybe the tumors in my back lymph nodes shrinking as the back pain is high up where the nodes are enlarged.

    The only side effect so far is really bad nausea. I am taking domperidone but they have suggested another one to try which they will give me when I next have treatment (I am currently on my week off). I am still eating okay which I find helps as does sucking mints.

    I still have my hair at the moment as well.

    I wish you well and hope topetecan works well for you and gives you the strength you need to keep fighting.

    We are all here for you, keep strong.

    Hugs Jackie xxx

  • Hi Jackie, nice to talk to someone who is on this chemo, my onc said it was gentler than carbo/taxol and won't affect my hair, although I have heard conflicting opnions on that he also said it was 1 in 3 odds that it will be effective but as we know we diprove statistics all the time :) I hope I keep my hair my son finds it particularly difficult, Love to you Diane xxx

  • Hi Diane,

    My onc said it had a 20% chance of working for me but it appears to be so far. So fingers crossed for us both.

    Hugs Jackie xxx

  • Hi Diane

    Sorry to hear your news but hope the Topetcan will be effective and that the pain will be brought under control.

    Sending you love and best wishes


  • Hi Diane,

    I am so sorry thingshave turned our rough.....and I hope your new treatment will be effective sending you my best wishes love and prayers x G x

  • Thanks Gwyn :) xxx

  • Hi Diane,

    I'm so sorry to hear your news I hope the pain can be bought under control and the Topetecan soon starts working.

    Please remember your board name :)

    love Marilyn xxx

  • Hi Diane,

    you probably won't know me either, but my heart goes out to you. I also hope your pain can be brought under control quickly and that the Topotecan works well. Keep strong - where there's life, there's hope - keep hoping and don't give up. This group is with you, supporting you in your fight. sending best wishes and prayers,

    Love, Honey xxx

  • Loads of cyber hugs and good thoughts winging your way Diane



  • Dear Diane,

    It is so brave of you to talk about such difficult news to take in.

    Still, so many times it has happened that the assault of our common enemy has been routed and we hope this will be the case for you as well. Keep up your courage!

    Big hugs and all good wishes


  • Thank you Niobe, it took a while to start writing that post, but had to do it, it is important we share the good and the bad with each other :) love Diane xxx

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