Santa found me some Caeylx

Hi All,

Quick update for those interested in my journey. As you may recall my CA125 went down to 90 after treatment 3 in first line chemo but then started rising. Last chemo was 28th October and as of 19th December my CA125 was around 480, doubling about every 4 weeks. PET scan shows it is in my Peritoneum but nothing too awful yet. There is something in my left breast but I am having an ultrasound to see if it is cancer or just something else. The bloating is there but not bad enough yet to drain, but enough to make me feel generally unwell and difficulty in standing upright. So I am starting 2nd line on 9th Jan (pending sign off from my main oncologist rather than his registrar I saw today). The good news is...they found me some Caeylx! So scan, symptoms and CA125 all point to more treatment now.

Thanks to all of you who have wished me well. It could have been worse - I was prepared for news I was riddled with it. Because it is multi-site (Peritoneum) an operation or radiotherapy is not appropiate.

Bring it on.

Love Lizzie


20 Replies

  • Oh Lizzie, thats great news !!

    Sorry your suffering at the moment, but what a New years Present (CAEYLX)

    Fingers crossed it knocks it on the head for you, I hear its good stuff.

    I to was diagnosed Primary Peritoneal Stage 3, but so far so good !!

    You go girl and kick it to kingdom come LOL.

    Luv trish x x

  • Hi Trish,

    I will try hard to do so. I feel very positive about it - carboplatin/taxol was just a wash-out for me. Have a lovely New Year celebration and I look forward to talking to you in 2012.

    Love Lizzie


  • Hi twin

    Great they've found you some Caelyx. I felt fine on it, apart from itchy legs - will give you details of how to deal with that IF necessary.

    I had over a year without treatment after a course of Caelyx and mine was much more advanced than yours at that stage.....So it all sounds like positive news to me. I've kept wondering but didn't like to ask.

    Really hope you've had a good Christmas and you'll start to feel better once the treatment starts. Your hair will grow back too and I remember going on long walks etc.

    Lots of Love


  • Thanks Twin. I am afraid I was never really big on Christmas except Christmas Eve, and that is when the bloating started! So you never lost your hair with Caeylx? Any news on when XL184 could be generally available? Also which phase of the trial is it?

    Hope your Christmas was good and I wish you the very best for 2012!

    Love Lizzie


  • So sorry you felt ill over Christmas. But it really is just 2 days. It tends to be about giving other people a good time - children and our parents. The best bit is seeing friends or just snuggling down in front of the fire with your husband watching too much TV. I am going to have a rest this afternoon, will then try to dye my hair so my kids won't be too embarrassed to have me with them at a party this evening. It could go wrong of course in which case I'll have to find a paper bag.

    I liked caelyx OK may be 'like' is too strong a word but I felt fine having it. It doesn't take as long to administer, I never felt sick and yes it will give you plenty of time to grow your hair back. The inside of my knees got itchy and I used an ice pack to ease the itchiness. But when you feel well in yourself you can deal with this kind of symptom.

    I finish the trial period of XL 184 on 16 Jan but I think the plan is for me to carry on taking it. It is a phase 2 trial. The onc told me a few weeks ago that there were only 14 places left on the trial worldwide so hopefully that means that phase 3 will take place soon. No idea when it will become generally available - I will keep looking at the Company website.

    You look lovely in the photo - its so nice to put a face to a personality!

    I hope you can pop to a neighbour's and have a drink or 2 this evening or you might have more ambitious plans!

    Lots of love and a very hopeful and positive New Year to us all.

    Twin (can't remember now if I'm big or little!)

  • A very Happy New Year to you twin. (You are the little twin but with the bigger knockers!) Thanks for the compliment. NHS wig and my special bloating dress on for photo. We have the snuggle in front of the fire with too much TV plan for the rest of today. Tomorrow we are seeing my Mumzie and taking her out. Thanks for info re XL184.

    Here's to another 12 months of us all keeping the monster under control.

    Love Lizzie


  • How does the new hair look? Did the dye go well?

    Love Lizzie


  • No the dye didn't go well! I have dark brown hair and the white stripes now look yellow! Not too bothered for myself but it does give me another excuse to be reclusive. The trouble is I am getting used to my own company and quite like it.

    Hope you have a nice time with your Mum and have plenty of hugs.

    I haven't made any New Year resolutions I think we've got enough to deal with, without setting ourselves more challenges. If you can think of any easy to achieve resolutions I' be interested to hear them.

    Love Sarah

  • Hi...

    Funnily enough my next tratment is on the 9th the Marsden....glad things better than u expected........and caeylx...what is that.....? Hope u ok...been thinking of you today!xx

  • Hi Florence,

    I think our posts crossed. Caeylx is standard second line chemo for ladies who are platinum resistant. However, it is in short supply and most places are only letting ladies who have already started with the drug have it. Luckily they have dug deep and found me some from the back of the cupboard ;-)

    Love Lizzie


  • So glad you've got it then......great news.....have a really fab 10 days before it starts!

    Love Florence

    ps I think you look really great in your photo!

  • Thanks Florence. NHS wig and my new bloating dress that I chose and my Mother and bro bought me for Christmas. You look lovely in your photo too. You inspired me to go for it with your photo. I thought we could all do a sofa shoot LOL! I am looking forward to Margaret's in her chaise-longe.

    Love Lizzie


  • Hi Lizzi

    So pleased to read your news. I've just finished 7 monthly caelyx treatments with only very minimal side effects which although annoying and cumulative really caused me few problems. It's been as effective as 1st and 2nd line treatments of Carbo/Taxol and been so effective that instead of the 10 that I could have had we decided to stop at 7, saving the remainder for another time. I'm sure all will go well with your treatment and the new year will be a very positive one for you. Good luck. Meryl XXXXX

  • Hi Meryl,

    Thank you so much for the encouragement. I am feeling positive about the new treatment. Since Septemeber I knew carboplatin and taxol were a wash out for me, so it was hard to have the last 3 treatments knowing there was next to no point. Only sad thing is here comes bullet number 2 and I am only just over 6 months since diagnosis.

    Love Lizzie


  • Hi Lizzi,

    Good news and hope you are feeling better fingers crossed for 2012 xxx

  • Thanks Bosue. I am hoping caeylx is my lucky drug LOL! Long may your remission continue. Save a space for me next to you.

    Love Lizzie


  • Hi Lizzi

    Sending all good wishes to you that treatment works. Everything crossed for you for the New Year x x x

  • Hi Chris,

    Thank you. I just want to say how lovely your hair is! I cheated on my photo - NHS wig and my special bloating dress which I chose and my Mum and Bro bought me for Christmas.

    Love Lizzie


  • Congrats on finding caelyx. Good old Santa. Good luck with the treatment.

  • Thanks Lizzie. Hair grew back grey and I wasn't ready for that. This is the second colour. Went red first when hair looked like action man's, then decided I wanted an 'Annie Lennox' look. I had a nice blond wig when I was going through treatment..............I called her Doris and she was very glam. Now in a box hopefully never to emerge again. Hope you're having a good day.

    ChrisR x

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