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Faslodex / Xeloda / Ribociclib with Letrozole

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Comments

  • Tilly45
    Tilly45 Member Posts: 86 ✭
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    Hi @FYONA1
    Glad to hear your side effects have been minor. It will interesting to see how your tumour markers go, it may take a couple of cycles. My cancer is stable on this combo. No change. I have found the minor side effects have settled even more, the longer I'm on it. I do have to do life at a slower pace otherwise I feel pretty wiped out after a day or two. Otherwise everything is great. I have cut back work from full time to two days a week and that is fantastic for me. What are you up to with your work situation? xx
  • FYONA1
    FYONA1 Member Posts: 138 ✭
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    Hi @wendy55
    i sent you a private message xx
  • FYONA1
    FYONA1 Member Posts: 138 ✭
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    Hi @Tilly45
    thanks for asking I'm a full time mum I always have been and my husband runs a business from home so I'll occasionally help him with filing and bookkeeping
    i did want to tell you that I'm very scared to start cycle two as I'm worried that the side effects will all kick in I'm scared that my hair will thinnen I went to the hairdresser yesterday and so far so good it still feels and looks the same but it's early days 
    another lady told me that it will start coming out more after third or fourth cycle
  • Tilly45
    Tilly45 Member Posts: 86 ✭
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    @FYONA1 I’m on my 7th cycle and no problems with hair, I guess it is different for everyone but that also means you could be okay. Ribociclib is not known for causing all of your hair to fall out. I have read as much as I can and I haven’t come across much negativity apart from a couple of people. Try to have a break from reading about other people and their experiences if it is messing with your positive thoughts. I come back when I feel strong mentally. It is really hard at times, I try to find lovely distractions. I have been baking a lot, that helps me. xx
  • FYONA1
    FYONA1 Member Posts: 138 ✭
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    Hi @wendy55
    oh wow that's great you seem to be doing really well
    i also enjoy cooking and baking but gave been unable to focus 
    although I'm still doing what I normally would 
    have a 24 and 23 year old adults that I till do everything for
    im 46
    you have given me some hope and positivity and I really hope that I'm more like you 
    fingers crossed
  • FYONA1
    FYONA1 Member Posts: 138 ✭
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    Tilly45 said:

    @FYONA1 I’m on my 7th cycle and no problems with hair, I guess it is different for everyone but that also means you could be okay. Ribociclib is not known for causing all of your hair to fall out. I have read as much as I can and I haven’t come across much negativity apart from a couple of people. Try to have a break from reading about other people and their experiences if it is messing with your positive thoughts. I come back when I feel strong mentally. It is really hard at times, I try to find lovely distractions. I have been baking a lot, that helps me. xx

  • FYONA1
    FYONA1 Member Posts: 138 ✭
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    Hi @ Tilly45
    sorry I sent that to wendy55 but that was for you 
    Oh wow that's great you seem to be doing really well
    i also enjoy cooking and baking but have been unable to focus although I'm still doing what I normally would
    i have 24 and 23 year old duly children that lstill live at home and I still cook for them and help them out
    im 46
    thankyoumfor giving me some positive thoughts and I hope that I can keep taking this medication without any unwanted side effects that will make me change my mind 
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @Tilly45 I am using baking as a form of therapy as well! I find it akin to meditation. You have to concentrate as it requires precision, leaving no room for other thoughts. You have to use your body to lift, stir, fold, pipe, balance, and co-ordinate your movements. I like to move smoothly round the kitchen, to work cleanly and efficiently. As part of my post-active treatment life, I've challenged myself to extend my skills and bake new things, with new techniques. The family are happy! K xox
  • FYONA1
    FYONA1 Member Posts: 138 ✭
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    Hi @Tilly45
    i have woken up feeling like I was three weeks ago very anxious and scared of what cycle two may bring for me in terms of side effects
    i have had a manageable cycle one 
  • Tilly45
    Tilly45 Member Posts: 86 ✭
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    I feel the same when I bake @kmakm It a great way of being mindful. I put on music and I feel so focused and peaceful. My friends love it cause they are enjoying the end products! 
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @Tilly45 I usually have music on as well. Or if it's the summer, the radio cricket commentary. That is truly my happy place!
  • Tilly45
    Tilly45 Member Posts: 86 ✭
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    By the way @kmakm you are amazing! What tough times you have had in your life. I’m so glad you are here online, I hope you can feel encouragement sometimes, you are amongst friends. xx
  • Tilly45
    Tilly45 Member Posts: 86 ✭
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    Thinking of you FYONA1 Hope you are able to focus on some other things today, maybe a nice massage or something just for you? xxx
  • FYONA1
    FYONA1 Member Posts: 138 ✭
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    Hi @Tilly45
    im trying to focus but I'm worried about continuing on with cycle 2 I'm just concerned about what will happen next
  • kmakm
    kmakm Member Posts: 7,974 ✭
    edited June 2018
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    @Tilly45 That is very kind of you to say. Like many, there have been good times and bad. My bad has been mostly been intensely clustered in the last six years and I'm OVER IT! Would dearly love a year or two where nothing horrendous happened... As I'm sure we all do!

    I do feel encouraged here when I'm feeling low. I trust you do as well. It's a marvellous space, and I hope my words help others as much as theirs help me.

    I'm off to bake a masala chai tea loaf now! I hope you're keeping well. Kate xox

    PS I love your profile pic. It looks very Wuthering Heights! Where is it?

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