Hi Everyone,
After 11 years the cancer is back and in my breastbone, has anyone else got this? I think its was quite aggresive .I’m on Vinorelbine (navelbine ).I knowI have to have bisphosphonates after,infact I’ve had it twice already for my calcium level.Its encouraging to read that they can manage bone mets for years.I’m getting sick of canula’s but by the sound of it , its something I’ll have to put up with!
Thankyou for reading this.
Raye
Hello raye
Welcome to the forums you’ve come to the right place for some good support as many of our users have a wealth of experience and knowledge.
I have put below a link to a BCC publication which may help you. If you would like to talk to someone in confidence then please do phone our free helpline where you can talk to a trained member of staff. The helpline number is 0808 800 6000 lines open Mon-Fri 9-5 and Sat 9-2.
breastcancercare.org.uk/upload/pdf/secondary_breast_cancer_in_the_bone_0.pdf
best wishes
June, moderator
Hi Raye,
Sorry to hear that your cancer is back, but welcome to the forum.
My bone mets was dx with primary last June. Breastbone was the 1st place they’ve confirmed it. I have 4 other places with bone mets and have been on bisphosphonates (zometa) since last Aug and it has certainly stabilized my bone mets - no new areas since last Dec. I’m also on FEC chemo (not had any experience with vinorelbine yet).
Hope zometa will do an equally good job to you.
Take care xx
Hi Raye, sorry to hear about your bone mets. Zometa is a good treatment, when it stabilized my bone mets (several places but not sternum) I was changed to bisphosphonate tablets (Bondronat), so hopefully you’ll say goodbye to cannulas one day.
May I ask, I’ve not heard of Vinorelbine being given for bone mets, wondering why you’re being given that chemo? And are you having it as a drip or as tablets?
Hi Raye,
So sorry to hear about your met - must have been a terrible shock after 11 years. I am also on Zometa, and I assume I will be for as long as I’ve got - going on to tablets hasn’t been mentioned. Anyway, I had a port fitted as my veins were problematic - maybe if you will be on biophosphates long term this would be a better option for you?
I hope the chemo is doing it’s job - you’ll find there are plenty of ladies here doing well many years after having a bone mets dx.
finty x
mrsblue - I was wondering how long after starting Zometa they changed you onto tablets. Also, by stabilising, do you mean no progression at all? I am fairly new to bone mets so this is all very interesting to me.
Hi Raye
Sorry you have to join us on the secondaries forum - none of us want to be here 
However we have a lot of experience of different treatments and are proof that you can live with bone mets. I had FEC to begin with (2 years ago) as I also have a local recurrence. I had IV bisphosphonates at the same time and these continued after my chemo course had ended. I am now on Arimidex (I’m very hormone positive) and moved to bisphosphonate tablets last year when I got fed up with ‘hunt the vein’.
In answer to finty’s question you can ask to be moved from IV to tablets but I expect it is down to your onc’s opinion and also how well you are doing. Since my dx and subsequent treatment my bone mets were/are shown to be healing and are stable ie no progression. I discussed going onto tablets as I was fed up with my cr@p veins and also the 3 weekly trip to the hospital. Everything has remained stable since changing a year ago.
Good luck to Raye and everyone else with their treatment.
Nicky
Hi Raye,
Sorry you’re here but welcome.
I was recently dx with bone mets to spine and ribs and after 10 1/2 years it was a big shock so I can imagine how you are feeling at the moment. I have found these forums a great help and source of comfort as well as knowledge, I would encourage you to use them they really do help.
Finty, you say you have a port fitted, can I askn if you are having chemo or did they fit it for the zometa? My veins are rubbish and they did mention a port but not sure if they’ll fit it just for zometa , I’m lucky as am no on chemo yet.
Be kind and gentle to yourselves.
Love Julie
Hi finty
My first bone treatment was IV pamidronate for 1 year. One of my bone mets (in hip) grew slightly so I was changed to IV Zometa. Bone scan after 6 months showed disease stable, so on to Bondronat tablets - this was March 2008. Sadly I now have spread to the liver (so had recent chemo) but no problems with bone progression.
Hi Julie
I had the port fitted at the end of chemo, but only because I knew I would have at least another year of IV Avastin and Zometa - otherwise I would have suffered on with the veins for one more round. I had mine done privately, so there was no issue. But I would have thought if your veins are bad they would do it for Zometa - I don’t see why it would be treated differently from chemo - you are likely to be on it for a long time.
Thanks mrsblue - so sorry to hear it has spread to the liver - I hope the chemo is doing it’s job.
HI Thank you to everyone for your support . I Don’t think my onc has explained my treatment plan properly to me as yet, and I had no idea that it would be on-going in the extensive way that it seems it will be.I have my half way scan next week, seeing my onc a few days later - I intend to ask a lot of questions!
Thanks guys,
Raye