need to hear from people with bone mets

TrekkieTrekkie albury wodongaMember Posts: 6
Hi I was diagnosed with breast cancer in 2014, 1 year later I had ovaries removed as it had gone there. In october this year I found that i had bone mets. I have been on chemo tablets and I am up to my 4th cycle. I had radiation on my tailbone and I get an injection once a month.  I am 53 and would just like to discuss bone mets with people in a similar situation. I still feel in the dark about my future. So far my cancer hasnt followed the norm. As I was on Tamoxafin initially and then on exemestane. Its like they work for a while and then the cancer starts to win again. Its too early to know if the bone mets are slow developing or will be agressive. So this is my 3rd diagnosis and I feel like its beating me mentally this time. I still work full time, work has always been very supportive of my needs. Anyway i'm new at this, so thanks.

Comments

  • ZoffielZoffiel Regional VictoriaMember Posts: 933

    Hi Trekkie

    If you haven't already done so, go to the link for Living with metastatic Cancer and ask to join. it's a closed group for those who are in your situation. Which sucks, by the way. So sorry to hear things have gone this way for you. Good luck,  Marg xxx

  • angg66angg66 Melbourne VicMember Posts: 119
    Hi @Trekkie. Sorry to hear about your diagnosis. I am in a similar position to you. I am 51 years old & was originally diagnosed with breast cancer in 2012. I did a lumpectomy, chemo & radiotherapy in 2013. Then in 2015 I was diagnosed with metastatic breast cancer. It has spread to my bones, liver & lymph nodes. At first I was devastated (and I still have bad days where negative thoughts take over). But now I try & live every day to the fullest! Life is very uncertain.... 
  • TrekkieTrekkie albury wodongaMember Posts: 6
    Thanks  zoffiel and angg66 for replying. The uncertainty is the hard thing. I was really positive the first 2 times, going to beat the odds. Now I just dont know. I get a twinge or a stiff back and wonder if something is going on. My husband and I are going to do more things for ourselves. I tend to put myself last a lot (iim sure that sounds familiar to you all). Next year we are going to Queen, Pink and Rocky Horror. Some positives to focus on.The emotional roller coaster is difficult, today I was feeling scared. I've never felt that way before about my cancer. my husband goes from one extreme to the other. one moment we need to make funeral plans and the next all is going to be ok. anyway i need to try and get some sleep. hopefully my feet wont wake me up! thanks again.
  • wendy_h67wendy_h67 Member Posts: 355
    Hi  Trekkie , I was diagnosed with metastatic breast cancer almost 6 years ago. My mets are in numerous bones from my skull bones ,spine, pelvis and head of  the femur.   I have been on a few different treatments during that time including Xeloda,  Aromison,  Afinitor,  and now back on IV Abraxane.  Different treatments seem to last for different lengths of time.and every one is different.   Some people can last on a certain treatment without it starting  to fail , longer than some one else on the same treatment.  If that makes sense. We are fortunate in that , there always seems to be another treatment available . I do get bone pain but mainly keep it under controll with Panadol Osteo and the occasion Endone. Recently I had some radiation therapy for a new area on my hip that was more painful.  This seem to give me some pain relief.  All in all life goes on . I am able to get out an enjoy myself doing things I love doing .  Walks on the beach , coffee with friends, craft work and best of all happy time with my family and grandchildren. Hope thing go well with your treatment. Just get out and enjoy life while you can. 
  • TrekkieTrekkie albury wodongaMember Posts: 6
    Thanks Wendy_h67, It s helpful to know that there are many other options still available to me. My previous treatments tend to lose their potency after awhile and the cancer gets the upper hand.  At least hearing other stories from women makes me realise that I may have more mets appear but it can be managed and over a number of years. I still work full time as my husband struggles to find work at 57 but we will try to do more fun things together. I have emailed OTIS to find out abut their accommodation, maybe a few days away somewhere special. Yesterday was probably the worst day I have had emotionally. I just became so overwhelmed at work. It was like I was overloading and couldnt deal with anything.  I think I will try talking to a councillor.  I dont feel quite as alone now so thankyou to those reaching out.
  • AfraserAfraser MelbourneMember Posts: 988
    I haven't got mets and I can only dimly imagine how confusing and frustrating it must be to deal with. However during treatment, I got three side effects that I will have for the rest of my life. I wasn't expecting that, and felt pretty uncertain about who was going to emerge at the end of all this stuff. I thought about a support group but made the better decision (for me) of a one to one counsellor. It was an excellent move, and helped sort out my thinking immensely, immediately and ever since. I found it was really good to get someone with experience in talking to people with cancer. It wasn't the cancer, or the treatment, I needed to talk about, it was ageing and facing my own mortality. A relatively small number of sessions and I had turned a big corner! I hope you find it helpful if you decide on some counselling. Very best wishes.
  • lesleyblesleyb Member Posts: 37
    Hi Trekkie, best advice i can give you is find a good phsychologist or counsellor.  Mine has helped me enormously with meditation and Mindfulness.  These tools help you to focus and appreciate the present and not worry so much about the past and the future.  Helps my anxiety so much.  I was dx 3 years ago with Stage 4 Mets.  Haven't had any chemo as yet but had Arimidex, Aromasin and Xgeva shots but I am looking down the barrel of starting the oral chemo Xeloda  early in the new year as I have had some progression.  My onc said he doesn't want me to start chemo till it enters my organs but I disagree.  No two cancer people are the same.  We are all different in many ways.  i try to live each day as it comes and enjoy the good things in life most of which cost nothing.  
  • TrekkieTrekkie albury wodongaMember Posts: 6
    Thankyou Afraser and lesleyb, It is helpful to know that you both benefited from speaking with a counselor. I will be contacting my local breast care nurse on Monday so that I can get on to a counselor. I remember her recommending someone previously. I have stepped back a level at work, still full time but with less responsibility. Less money but it will give me breathing space and less stress to help deal with things. It already feels like some of the worries have lifted. I'm a bit excited, there is a vacancy at one of the OTIS retreats that I wanted to stay at the week of my wedding anniversary. I will need to put in for leave at work but I have Long service I can take as well. A positive to look forward to.    :)
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