Bone Mets - Positive stories welcome!

Hi Everyone… I’m Alex, 25, living in Manchester. My primary diagnosis was in 2013 aged 23 but I’ve recently been diagnosed with Secondary Bone mets in my hip, spine, shoulder, ribs and skull. I had to have a pin fitted through my hip and femur to prevent bone fracture where the cancer is. I’m starting Capecitabine this friday and Denosumab injections monthly. Please could I have some feedback from others in a similiar position, I’d like to hear some positive experiences as I’m quite scared at the moment. I hope you’re all as well as can be. Thanks xxxx

Hi Alex, I’m so sorry to hear this is happening to you at such a young age. I was diagnosed with breast cancer and bone mets together in my early 40’s. I had a fracture and have a replacement hip. Twelve years later, still here, thanks to the usual treatments. I had four and a half years with Capecitabine, good luck with it. Keep in touch, this is a friendly, supportive place. X

I’m considerably older than you and am on Capecitabine and have the monthly Denusonab injections. My tumour markers reduce whilst I’m on Cape and I feel generally fairly well (there are some side effects). I work full time, commute 4 hours per day to work and have a reasonable life outside work. I hope that it works for you too!

Hi Alex, sorry to hear you have secondaries and at such a young age. I also live in Manchester, i had my primary in 2007 and was dx with mets to hips, ribs and spine in March last year.
I’m 47 and still working although i have reduced my hours now to just 2 days a wk, i am on tamoxifen, zoladex injections and denosumab, i am for the most time quite positive about life…i refuse to let this nasty disease grind me down and i live a happy normal life otherwise.
Good luck with your treatment Friday.
Hugs Janette x x

Hi Alex. Sorry to hear about your bone mets, especially at such a young age. I am considerably older than you (66) but I have had bone mets for over six years now and have been on capecitabine for the past three years, plus Zometa (a bone strengthening drug) every 12 weeks. To begin with the side effects from the Capecitabine were very uncomfortable, ie the problem with sore hands and feet. I was taking it two weeks on and one week off. The hospital said it would be perfectly ok to reduce the dose, which I did two years ago and now take them one week on and one week off. I worked until I was 65 and life has pretty much been normal. I know things can change quickly with this horrible disease but please try not to,worry too much. You will get great help on this website and hopefully you will come out of that dark place I am sure you are in now and be able to get on with your life. Once you start treatment I think you will feel more positive. Good luck. Ruth x

Hello Alex, and the rest of you.  I have bone mets too, dx last may as I had a spinal cord compression, nearly 5 years after the primary.  I’m on denosumab and anastrazole.  I had radiotherapy on the spinal tumour which was causing the problems, and it was like a miracle, all the aches and pains are gone. 

I’m so sorry that you have to deal with this at your age, Alex.  I’m 52.  I am feeling well, I have no pain now, and apart from fatigue sometimes, no symptoms.  I think there is a great deal to be positive about, we all live in this game of snakes and ladders and sometimes ofcourse I feel down, especially when something scarey happens, but so far the treatment has always resolved things. On the whole I’m really really happy.  I’m working, and have 3 children and 3 step-children so I live a very full life.  I’m coming to the conclusion bone mets can be seen as a chronic illness, and people can live for many years with them, often without too many problems.  That’s what I intend to do!  There seem to be lots of treatments and thank God for the NHS and the brilliant people who work in it.  Bless you, Alex and best of luck with your treatment,

Henny xx

Hi Alex, just wondering how you are?  Hope your treatment is going ok.