hi my name is kath i am a young 54 year old. 8 and 1/2 years ago i started with breast cancer had mastectomy and treatment chemo/radiotheraphy/tamoxefen and last june i was diagnosed with secondary bone cancer, in spine-rib-hip. going through a bad time cant see a light at the end of a very dark tunnel, i cant do normal simply things like getting dressed. had radiotherapy and know going to try herceptin.
I have a fab holiday booked with all my family and should be looking forward to this but instead i just keep worrying about silly little things but the not to me.
how do people cope and live with the pain?
looking forward to hearing from you or anyone who is going through the same?
kath
Hi Kath,
Sorry to hear your bc spread to your bones, and that you are in that tunnel at the mo. You don’t mention being on any bisphosphonate drugs either pills or infusions. This is normal with bone mets. I have been on pamidronate since Jan 2003. I had some rads to the worst areas and the pamidronate infusions increased to 3 weekly and within about 3 treatments i found I was relatively pain free… I use the word relatively because I know i have to be careful how much I do. It usually raises a laugh when I say I need to avoid hoovering and cleaning floors LOL but it is true. A lot of simple things we take for granted can be quite difficult with bone mets. I think too we all vary in just how much is ‘safe’ for us. My mets are in my skull, collarbone, ribs, all of the spine, and pelvis/hip. But over the years the bone scans show that things are a lot better now than they were initially. If you are having a lot of pain I think you should talk to your oncologist about it. Maybe even get a referral to a macmillan nurse who will help you to get the most effective control of the pain. I have also been on herceptin since Jan 2004, and find that very tolerable. By the way - I am a young 63 :). Hope you can get the pain issue sorted before your holiday. I know I have enjoyed a lot of very enjoyable travel since my bone mets dx… and hope you will too.
dawnhc
xxx
Hi Dawn
Just want to thank you for your wonderful advice as usual. You inspire such confidence. I am still scared to have the MRI to show whether I have bone mets or not and I thought I was just a primary dx. I am so afraid. But your postings are always so optimistic.
I hope you have someone to support you like you are supporting others.
Hope you are also having a good bank holiday and enjoying some of this lovely sun.
Starfish x
Thank you Starfish - I am just glad that I can help in this way. I guess after 18 years with breast cancer you learn a bit along the way. I do have great support at home from my lovely OH and family. I often say how I wish forums such as these had been around at different stages of my diagnosis but even my daughter laughs at me and says the internet wasnt invented then!!! I am making up for lost time now for the past couple of years both on here and on bcpals, where i get a great deal of support too. What part of the country are you from - I am having a picnic at my place in Surrey soon for women with bc.
dawnhc
xxx
hi Dawn
thankyou for your advise,you sound very positive and am glad you are smiling. i am having bone strenghting at this moment and starting trials soon
lods of scans .by the way this is my first computor new to all this ,so you will afto excuse the spelling.Its nice to know that there is people out there
like me. i just feel like i am missing out on alot ,espeserly my new first grandchild Gracie she is wonderful.thankyou for your help Dawn
kath xxx
Hi Kath,
I think you have found a good use for your computer 
hope you get used to it soon. How long have you been on the bone strengthening stuff and which one? Maybe it is too soon for you to notice the benefits just yet. Sorry to hear you are having loads of scans just now - what is the trial you are starting on?
Ohhhhh envy envy!!! I want grandkids LOL. My daughter just got married last month. How old is Gracie?
Dawn
xxx
Hi dawn
Gracie is 6 months old ,we have been down the garden sitting in the sun,what a lovely day.im not quiet sure at the moment which bone strenghtening but begins with z .they are going to start me on Herceptin ,are you on that
kath xxx
Hi kath,
yes I have been on herceptin now for over 4 years. The bone drug you are on is zometa so hopefully will have some relief from the pain soon. It is a beautiful day here too - I am in Surrey - whereabouts are you? 6 months is a lovely age isn’t it, do they live near you?
Dawn
xxx
Hi dawn
we live in a little farming village called Brampton-en-le-morthen in south yorkshire. my family don,t live my son sheffield and my daughter
just over the field we are very close and give me lods of support,iam very lucky that way.
do you have family near.
Kath xxx
Hi kath
i will reply in a pm (whisper) cos I guess too many personal details aren’t good when the posts can be googled.
Dawn
xxx
hi Dawn
sorry dawn don,t understand [whispers] will sort it out.
kath xx
Hi dawn , sorry to hear about this … keep fighting i have cancer secondard in whole spine now and just dignose with brain tumor … i am bisphosphonate infusions and herceptin for 3 years i only get a little pain been on lots of holidays, had great time too , i went to see pain specilist in hospis they give great advise on pain relief… good luck sophie