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Newly Diagnosed

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Smiley Van Winkle
Smiley Van Winkle Member Posts: 16
edited June 2018 in Metastatic breast cancer
Hi, I was diagnosed in April with mets in bones. After three different cancer journeys with breast cancer over many years had a bilateral mastectomy 10 years ago. Now what? I am just at the beginning of a new learning curve. Feeling overwhelmed and unsure but will plod on and deal with whatever comes. Life is good and worth fighting for. I feel lucky to be on the new combo of breast cancer drugs Letrozole plus Ribociclib, had been on Tamoxifen for years, it obviously became immune to the cancer cells. Love to hear from anyone re this treatment or just to chat.
Cheers
Smiley ☺
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Comments

  • Pamelamary
    Pamelamary Member Posts: 240
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    Sorry to hear this, and I know the diagnosis can be devastating. I have been living well with bone and liver mets for over 6 years now. Treatments have improved so much. I hope your combo works well for you and that you find good support for the coming months.
    Regards..... Pam
  • arpie
    arpie Member Posts: 7,577
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    I am SO sorry to hear of your Mets diagnosis ..... a buddy has been recently diagnosed with Bone Mets - and is just on hormone tablets as it is 'slow growing' ...... hopefully yours is too.

    I hope you have friends & family nearby to support you - in the mean time, I guess - just get out there & keep doing what you love doing for as long as you feel up to it .... hopefully for many years to come!  xxxx

    All the best - thinking of you xxx
  • Smiley Van Winkle
    Smiley Van Winkle Member Posts: 16
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    Thanks so much Pamelamary and arpie, great to hear from you. Will take on board your comments and encouragement. So far am in my second cycle of treatment and tolerating minimal side effects. Am getting on with trying to enjoy the day. Hope you are both well.
    Cheers Smiley
  • Kattykit
    Kattykit Member Posts: 252
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    Hi @Smiley Van Winkle, I am on this combination and have had some good results, some shrinkage and a couple have disappeared altogether, this is after around 6 months, so pretty happy overall, I hope you keep feeling well, Cheers Kattykit.
  • FYONA1
    FYONA1 Member Posts: 138
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    Hi @Smiley Van Winkle
    i am also on this combination and almost finished cycle two 
    I have mets in my spine t11-12
    so far doing ok 
  • kmakm
    kmakm Member Posts: 7,974
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    Good to hear that @FYONA1. K xox
  • wendy55
    wendy55 Member Posts: 774
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    Hi @Smiley Van Winkle,
    What a cute name, well ,so here you are, welcome to our little corner of the breast cancer world, I was diagnosed 5 years ago yesterday with mets in my spine and liver, plus tumours in my left breast,chemo got rid of the tumours in my left breast, but have been on treatment in one form or another since then,currently on Xeloda and have been for 2 years, unfortunately as I have already had chemo I am not able to get on the combo you are, although hopefully in the future the rules will change.So, life has changed dramatically for you, and I can only imagine what a shock it was to receive this after 10 years,
    where to from here? well, after picking your self up and dusting your self off, a new life begins, just as you said, plod on,you dont mention if you are still working or are retired, well either way, take care of your self, take time out to do what you want to, life really is good, I make small achievable goals for myself and just enjoy being in the moment, life is a bit slower these days, but thats okay, I have a wonderful partner and as we are retired we dont have to rush about, I take time out for a massage, coffee with friends or just simply sitting in the sunshine, if you are interested there are a series of videos on the bcna website about women living with metastatic breast cancer, different ages and different perspectives, you might like to have a look, also there is a hope and hurdles pack you can get from bcna as well,would love to hear from you as you walk along our path,
    wendy55  
  • Smiley Van Winkle
    Smiley Van Winkle Member Posts: 16
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    Hi Wendy55, so happy to hear from you
  • Smiley Van Winkle
    Smiley Van Winkle Member Posts: 16
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    Starting again, 
    Hi Wendy55 thanks for your message and welcome. My name was given to me by my partner as I am a happy person and love my sleep haha!
  • Smiley Van Winkle
    Smiley Van Winkle Member Posts: 16
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    So happy to hear you both are going well kattykit and FIONA1 great to hear from you both
    Hope you are getting my complete conversation wendy55, only 2 lines coming up on my post
    Cheers
    Smiley
  • wendy55
    wendy55 Member Posts: 774
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    Hi @Smiley Van Winkle,
    Well its Saturday morning, so hope you have enjoyed a sleep in!!! I have, I love my bed and sleep as well,specially laying in bed listening to the rain on the roof like last night, glorious winter morning here in country coastal south australia, I love the cold as it helps with my side effects,I am off to the hairdresser soon to have my hair washed cut and blow waved, its my special treat for myself I go every couple of weeks as I Find it very hard to look after it myself, I have hand and foot syndrome from the Xeloda that I take, a pain in the you know where, but hey you get used to it, actually no I dont I just have learned to manage it!! My partner is at his grandsons footy game, he is the goal umpire, so I am taking some time out for myself here,well must go and put the dishes in the dishwasher{best thing since sliced bread} thanks again for replying and look forward to hearing from you as the weeks pass -we are a very tough bunch here, high maintenance is how one of the other members put it and shes right, 
    wendy55
  • Ellamary98
    Ellamary98 Member Posts: 157
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    Hi @Smiley Van Winkle, I've also been recently diagnosed with mets to the bones. Mine are still small spots, and slow growing, so I am hoping to put off the Ribociclib/Letrozole combo for a bit longer. I am learning to accept my diagnosis, and consider what it means for me, but it is overwhelming at times. This week, I have made a decision to reduce my work committments a bit so that I can concentrate on my health and well being for a while, and spend more time doing the things I love. I'm sorry that you are dealing with mets too- it is so frustrating when you feel that you'd left it behind you years ago.
  • Smiley Van Winkle
    Smiley Van Winkle Member Posts: 16
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    Hi @wendy55 great to hear from you again, yes I am enjoying my sleep ins over these winter mornings.I think we are a bit warmer here in our part of the world near Port Macquarie. I was interesred to see you are in SA, we have just visited my partners family in Moonta Bay. My first good look at SA as did a road trip and enjoyed seeing the interesting towns and countryside.
    Hope you enjoyed being pampered at the hairdresser, we need these little T.L.C. moments and time for ourselves.Sorry to hear of you hands and feet problems, that must be difficult but as you say we are very adaptable thankfully. We are going away for a few days to visit family this week so looking forward to the drive and the break away. See my onc tomorrow with blood test results hoping my white cells are up so I can start back om medication. Also having my first injection of a bone strengthening drug. Take care of yourself, loom forward to chatting soon.
    Cheers
    Smiley
  • Smiley Van Winkle
    Smiley Van Winkle Member Posts: 16
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    Hi @Ellamary98 thanks for making contact. Yes it is a slow growing disease so this is a positive.
    Good you have made more time for yourself, its important to look after ourselves and spend time on what makes us happy. I am doing the same so wake up looking forward to the day. It doesn't mean I don't have those moments when I am scared but I just don't let them last and take away my joy of the day. Keep your chin up, thinking of you.
    Cheers
    Smiley
  • wendy55
    wendy55 Member Posts: 774
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    Hi @Smiley Van Winkle
    I don't believe it, you were a 10 minute drive away from where I live,Moonta Bay is not far from me,Moonta is part of the Copper Triangle towns of Kadina, Moonta and Wallaroo, I live 5 ks out of Wallaroo at a pretty coastal town called North Beach, what a pity, we could have caught up and had a coffee, bugger!,I have been on bone strengthening injections for 5 years now they are called xgeva also known as denosunab, I have the community nurse come out every 6 weeks to give it to me, hope they explained to you to keep up with good dental health,I am on my 9 days off at the moment, I take chemo tablets for 12 days then have 9 days off then have a blood test to see how things are, I go and have a ct scan on the 21st July the back to see my oncologist on the 26th to get results, the chemo that I am on has so far reduced the 6 tumours in my liver to 2 and the the ones through my spine are stable, so I am pretty happy, well its a beautiful but cold day here and I am still in my dressing gown! so I had better get myself going, so pleased to hear that you are having another break, we need to do that for our selves, we have just had a 3 day break our selves and it recharged my batteries,I had a very dear friend who lived at Nelsons Bay, when my partner and I visited relatives at Raymond Terrace we were able to actually catch up and meet, so lovely to put a face to the woman I had been chatting to!!, 
    please keep in touch and let us know how you are going,
    wendy