I am now just over two years since sec bone only mets dx, and currently NED. Am on herceptin and pamidronate three weekly and a recent bone scan shows no new activity since previous scan a year ago.
My onc, who I saw yesterday, said that he is much more relaxed about me now than he was when I first presented to him with the secondaries, so much so that he said he would now add my name to a (fictitious) list of women who he would reckon on surviving for a good few years before any new activity. He told me that one of his patients, with a similar pathology, has now been on herceptin for about 8 years.
I came away feeling as if a huge weight had been lifted from my shoulders. Till now I haven’t allowed myself to even hope that I might live more than the oft-cited 2-5 years, and I’ve recently been very aware that I’m now in that timeframe and can almost hear the clock ticking!
I feel in a way as if I’ve been treading water a bit these last two years (and I guess there’s been a lot to go through, what with chemo and later a hip replacement op), but now I feel as if I really could still be alive in 5-10 years time, which puts a completely different spin on things. My little one is three and a half; I was determined to see her into primary school … now I can set my sights on secondary school! I can get emotionally closer to my husband again, as I think I’ve withdrawn from him since the sec dx, perhaps in a sub-conscious effort to make my death less painful for him! And I can suddenly see all sorts of other things that I want to achieve, and can realistically fit in. My horizons have just magically expanded and it feels wonderful.
Anyway, just wanted to share this good news with others and hope that it inspires ladies in a similar situation to me: bone only mets, HER2+ and responding well to herceptin.
Alison that is great news. I am in a similar position - just one bone met found at time of original dx, and my onc is confident I will live for quite a while yet. The stats are very frightening though - and I have very bleak times too. But there does seem to be a group with bone mets where the cancer is “indolent” - and seems to stay in the bones and respond well to treatment. Let’s hope we are both in that category.
incidentally, I started a thread for bone mets ladies a week or so ago - do join us if you’d like to - called “Bone mets - please join in”. I never get tired of hearing about some of our posters that are doing well after many years with bone mets.
Great news Alison, I am about 15 months since secondaries were diagnosed and also doing well - last CT scan in June showed the bone mets were contained - I too hope I am around long enough to see my son grow to adulthood - doesn’t it make you appreciate all the positives in your life - the little niggles in everyday life become pretty insignifcant and I dont let too much bother me these days - onwards and upwards girlies xx love to everyone xx
Wow! That’s sooooo good. I am waiting my scan and if this is ok I will be 18 months with it under control too. Have seen my son start school and had many great times with family and friends. Life is quite ‘normal’ really and so I just hope I get another 6 months when they see my results. Cetrabine chemo tabs and Zoladex implants is what I have been on.
I have become much more confident in my bones and body this last year. In fact, I have been training for the Clebrity Trek to Peru. I have coped with pilates, the gym, running and increased activity with no adverse affects or tiredness. It shows how I had put limitatins on what I could do when in fact… I should seize the moment of pain free days!
Watch oout for the trip on ITV2 last two fridays in October. I am flying the flag for secondary BC in younger women. I hope to do you proud!
I think we are all inspiring…this is the forum to read … I like to focus on the positives and not the doom of having secondary BC, I know it will get tough but whilst the going is good we all need to post the good news!!!
Hi Ladies, I am an old timer at this bone mets diagnosis! I have had bone mets for 11 years now and at present am feeling better than I did all those years ago. Hope you all continue to have a good response to the treatments available to us. But remember to listen to your body and rest when you need to. It makes all the difference. Love Val
When I was diagnosed a long time ago like Val (Scottish Lass) I knew that things were not good even though the first time I went 6 years before a recurrence my oncologist made me aware I had an aggressive cancer. Then it was each year from 1996 onwards that something else occurred and needed more chemo and more ops. I began to thing there were many things ‘in the future’ that I wasn’t going to be part of. Things like my children going to Uni (they were 16 & 18 when I was dx, my 50th birthday, our silver wedding anniversary, getting my State Pension (LOL)children getting married, grandchildren and so on…
As I look back with real pleasure I have seen all of these events come to pass, plus 60th birthday, ruby wedding anniversary.
Part of this has been thanks to new drugs and treatments that have come along in the past 20 years as well and will keep coming.
So I really hope that some of you younger women reading this thread will take hope - sometimes there are things to celebrate and we can be part of them.
Hi Dawn (and everyone else on this thread), I felt very like you did. I was 39 when I was first diagnosed and my girls were just 7 and 14. I thought then that my time was up. I just wanted to see my girls grow up. I had ten years after my chemo and mastectomy when I went back to work. After 5 years I hung out the flags and when I got to 10 years I thought my luck was in…spoke too soon…had bone mets diagnosed when I was 49. My girls are now 35 and 27 and my OH and I both had our 60th birthdays this year. If I have any regrets ( I don’t usuallly do regrets!) but I have wasted a lot of time thinking about how short my life would be. I have now dismissed this thought and try to live each day as it comes along. I am so over the moon that I am still here…but so sad that ao many other women with BC have not been so fortunate. Life is strange, and unfair at times. But at the moment I am enjoying life and taking one day at a time. Hope this gives some hope with anyone struggling with treatments just now. Love to all, Val
Hi Alison and all others,
It is wonderful and very comforting to read this new forum; it is now the first one I look at! I was hoping to post some good news myself but have had a bit of a setback so it is your news that keep me going. I had mastectomies in 1996 and 2006 and was diagnosed multiple bone mets in March this year and after treatments felt I was starting to pick up again so hopefully this is just a temporary setback. So keep the good news coming, ladies- I am eagerly awaiting your postings and hope to have some good news myself soon. Love. Beatrice.xx
All these comments are truly amazing, Dawn and Scottish Lass… I send you both a hug () and true thanks for your wisdom and survival. You give me true hope. I also read these aloud to hubbie x
My scan reults came and went… all is under control… 6 more months of fun ahead. Yipppeee!!!
LottieLou I’m really glad your scans came back positive, and hope that you do have lots of fun in the next 6 months.
I’ve posted on another thread that I’ve just been camping with my hubby and three year old daughter for the first time as a family and it was great fun. I now want to investigate going up in a hot air balloon as it’s something I’ve always wanted to do. The positive frame of mind that I reported at the beginning of this thread has stayed with me and I really do feel that I’ve a lot to smile about.
Peru was fantastic… full on… highs and lows… but I feel liberated. Have come back with a new level of confidence to carry on and have fun and not restrict myself too much physically.
Check out ITV2 October 25th… hope I do you proud!!