I did post early on this thread but have read a few recent posts that I felt I could reply to.
I have had bone mets since diagnosis in July 07. Had chemo, then mx and anc, then rads and then zoladex and arimidex and zometa. I have been on zometa on NHS since Sept 08 and last time I asked they intend to keep me on it as long as it’s working and my veins hold out. I had flu like symptoms after the first lot but had paracetamol like they advised. I do get suddenly very tired either on the evening after the drip or the next night and also get reflux which is sometimes worse than others. I always drink plenty of water while the drip is going in.
2 years ago when I was switched from tamoxifen to arimidex I had a baseline dexa scan and it showed the start of osteoporosis. My mets are in my spine and ribs. I had a followup scan last week and my bone density has improved to the extent that there is only one area that is borderline. The zometa obviously is doing it’s job !!
Hello, I have been on Pamidronate, Zolidronate and Bondronate constantly for the past 10 or 11 years. There was only Pamidronate on offer to start with and it took a long time to infuse. I got some of my treatments when I was on holiday in Cornwall and they were using Zolidronate before I knew about it in Scotland. What interested me was that it was a very small bag and so took less time to infuse. I have never heard of any talk of stopping any of my Biphosphonates and they are keeping me well. Fingers crossed that they work equally well for anyone else. Love Val
Hello everyone. Thank heavens I’ve found you.
Myfanwy18, I think I’m about a month ahead of you. After chemo and a mastectomy, MRI showed bone mets in my spine. I have no symptoms from them and they are very tiny but it was a massive shock and the world ended briefly. I’m about to start radiotherapy and am on herceptin, arimidex and pamidronate.
My GP brought me back from the dark place I found myself in after my recent new diagnosis. “Right” she said. “You can either sit around waiting for something to happen or you can get out there and live”.
She’s right.
This is not going to get me yet. It’s hard but a positive attitude goes a long way. None of us know whats going to happen to us. We just know what might happen. This has opened my eyes to those wonderful autumn colours, those beautiful feathers on a mallard, my cats eyes, my daughters beautiful hair.
Sorry to go all poetical! I shall be reading all your news as it’s great to find folk who are in my situation.
Love Helen
Hi Helen and welcome to the club no-one wants to be in I’m glad you have found us, particularly this bone mets thread as we are able to share experiences and treatments that are specific. We all understand how you feel, I certainly remember the day I was told I had bone mets only too well! That was over 2 years ago and other than when I had chemo (for the local recurrence as well as the mets) I have felt pretty much the same as I did before my dx. I would say the ONLY thing that has been different is, like you, I enjoy and take pleasure in so many little things that I used to take for granted. A bittersweet change but at least I don’t ‘sweat the small stuff’ any more I hope your treatment works well for you and please feel free to ask any questions you may have, I’m sure one of us will be able to help. BTW these forums were the lifesaver for me as well, especially just after my dx, to find other ladies in the same situation as me really did give me hope.
Nicky x
I have been reading all the recent posts and realise what a truely horrible disease breast cancer is - as some of you have probably already read, for me it has spread to my bones, although I’m not in pain at present and of course am having treatment. I have been reading that some fellow warriors find it difficult even when they get a good scan etc to be positive, I to am having trouble with this, especially when my partner completely caves in and I have to support him, none the less and I know it will not be easy, I’m trying to have the mind set that I’m well, not to think too much about the future and just to plan things perhaps one month ahead. I’m reminded of that poor lady who had got the all clear for breast cancer and then was killed in an accident on the way home to tell her family - no one knows how things will pan out and there really is no point in dwelling on it.
Anyway, I think we should all think about Christmas, does anyone like collecting Christmas decorations for the tree? I love to and already have the date to purchase my tree in the diary. Let me know your favourite decorations.
Hi all
I am near the start of my journey. Going through chemo at the moment, FEC and just about to start Tax with herceptin. Then mx. I am on IV zometa also. My onc says he will keep me on zometa and herceptin for ever… whatever that means. I have bone mets too which I try to visualise shrinking in the face of all the drugs I am getting. One day at a time is hard, but I find it tough to make long term plans. I am on hols at the moment and really loving being by the sea.
For presents I am knitting tree decs. They are looking quite cute!
x sarah
Good luck with the tax & herceptin - hope you don’t struggle too much with it. I’m another one like you who is on herceptin & zometa ‘for ever’. Once you get the chemo out of your system the herceptin & zometa aren’t too bad and you can ‘get on with life’. I quite envy you being by the sea on hols. I just love being by the sea too. One of those places I can go and ‘visit’ when I close my eyes, is down in North Devon and I just love it.
Hi all
Thanks, Nicky for the welcome.
Oh Myfanwy, I’m there with you. My parents went to pieces when I told them and I ended up supporting them. My husband is fantastic, not strong but just there. My children said well, we don’t know about the future so lets just get on with it, as did my brother. My mum and dad are betterish now but it gives me strength to know I have to be strong for them.
We’re planning for the future because we now know there is one. Hearing from all you ladies has shown me that life goes on and although cancer is horrible, it isn’t the end. We have a list of all those things we want to do which ranges from Niagara Falls to me getting my ears pierced!
Knitted Christmas tree decs - sound fab. You crafty types are so clever! My christmas contribution is musical as I’m back playing my clarinet now in our local windband.
I’m really excited at the mo, as next week I have NO hospital appointments!!!
Helen I had to laugh when I read that having your ears pierced is on your list of things to do!!! When I was first diagnosed I had a thing about conquering fears and one of the things I feared a lot was water so I learned to swim!!! and then I had always wanted to have my ears pierced but had been too scared LOL. So I had them done. Also my hubby was great at the time cos he knew how much I wanted to see a bit of the world which up till then (aged 45) I had done very little travelling. I had a friend who was widowed young and so she and I each year would cover our list of places we wanted to see. Hubby was so good at just saying “go and do it”. It was hard to believe 2 years ago she died before me!!! and I was just so glad that we had got to cover so much of the world’s wonderful places.
“Don’t wait for the storm to pass – learn how to dance in the rain!” fits here!! But, bad MRI result today. Bone crumbling and tumor growing at a rapid rate. Doubling pain medication (fentinal, gabipentin, oxynorm, paracetamol, indametacin - however you spell them!!) to get me through to 18th when they will operate. Loosing feeling in legs and some movement in right leg – so a bit hard to dance in the rain at the moment – more like a slow sway!!
Hello there Sadie, Sorry to hear that the results were not good and that the operation is the next step. It must be very frighening for you. I don’t know all the meds you are on but have you tried Morphine or the patches or a tens machine. The patches you stick on the part that is sore and it remains on for 12 hours. If you need any info, get back to me. Meanwhile have a lovely slow sway, and I will be swaying slowly with you and holding your hand. Much love Val
Sadie, so sorry things are not as hoped at the moment, a slow sway seems a good start, I’m sure though they can sort it out reading other stories on this site. Personally I feel in a strange place at the moment. I’ve gone back to work today, half day, so nice and everyone was supportive, then in the afternoon with loads more friends at a wine bar having a good time, not concentrating on my illness. I feel so well with my friends but know I’m not, I have no idea how bad my cancer is or what they can do really. Wednesday I go for the pre-radiotherapy stuff then I have to have radiotherapy every other day for five weeks so I know its quite intensive. I’ve got the bone met stuff so I know it’s not going to go away but god, I feel so well - to be honest if I wasn’t told I had secondary BC I won’t know. I’m just confused I suppose, I always thought if your ill you feel ill!
Sorry ladies for being a glum, but it is hard to accept your ill when you feel so well.
Hi Myfanwy, I have felt exactly like that at times so know what you mean. I feel so good at times yet I know that things are not so good really. If I miss my medication I know THEN that I am only fooling myself and it is the painkillers and treatments that are keeping me well. I found that having radiotherapy was one of the easier things to go through. The first time you go takes a bit longer as they have to mark where they are going to pinpoint the mcahine oin ou and mark you with a pen. After that it is much quicker. It is travelling to the hospital 5 days a week that is the tiring bit. You will feel tired no doubt about that. Ay my hospital you used to get a specal ticket to put on the dashboard of the car to show you were attending the radiotherapy dept. Ask if it happens at your hospital. If you haven’t got a disabled blue badge now is the time to appy for it. Assuming you have a car/ or a firend does… to take you that is. All the best, Val X
I am very fortunate that I can walk to the hospital. How tired do you get with radiotherapy? How long does it take to come to terms with secondary BC? I don’t think I doing very well with all this really - perhaps you can help.
Hi Myfanwy, I does take time. I think I thought I was going to die in a few months…but I got that wrong. It is now almost 12 years since I found out I had bone mets and I feel better now than I did 12 years ago I can assure you. It is 22 years almost since I was first diagnosed with BC. The radiotherapy didn’t make me too tired and I found the process relatively easy compared to chemo. It took a few weeks to make any difference with the pain but it did help and I would have no hesitation on having it again if need be. You may feel that you are not doing very well but I think you are. You are able to put down in words your fears and that is a good thing. Just keep coming on here and put your feelings down in words and tell us just how you are. When I got diagnosed I didn’t have a site like this to help me. I felt very alone and scared too. I din’t know anyone with mets and there was no BC nurse who was just for people wioth secondaries. There is now…but oh I could have done with one back then. My motto always has been " one day at a time". You will get there Myfanwy, just be kind to yourself and try to rest when you can. Love Val PM me anytime you feel you need to.
Hello everyone,
Myfanwy, I’ve had my pre-radiotherapy and now have three dinky little tattoos where they will point the machine. It’s a pity they couldn’t make them the eyes of a dolphin or something like that. I start my radiotherapy on the 22nd. Perhaps we could go “together”. I’ll think of you when I lie there and you think of me.
You’ll get there. When they first told me I wondered how I could get positive again but you will. Like Scottishlass, I thought I was going to die but that’s just not true. Let yourself go through the dark bit and when it’s time, that wonderful brain of yours will say “Enough, let’s smile”.
Is anyone else freeked by scans? I jokingly said to my doc, “I really don’t want any more scans as they always give bad news”. It’s the waiting for results that get me. So my doc said he would monitor me using cancer markers in my blood - for now anyway.
Dawn - also on the list is keeping chickens. Having just watched “Sue and Giles do the GoodLife” on TV, I’m not so sure about that one.
Hi ladies
Sorry to hear of your MRI results Sadie, I really hope your pain can be relieved whilst you wait for your op. Good Luck.
Hi to Myfanwy and Helen, just trying to answer your questions about how you (we) cope. I also couldn’t believe how well I felt when I had my dx, didn’t suspect a thing, no pain, nothing, to show I had bone mets. Therefore when I was told it was like being hit by a hammer, OH and I were stunned and just walked out of the hospital not speaking until we got home. I suppose my attitude was I couldn’t do anything to change what had happened so I might as well get on with it - not being ‘brave’ or ‘starting my battle’ just bloody well getting this sodding cancer stuff kicked up the @rse! I did feel more in control, and therefore a bit better, when I started treatment. During my chemo I had several scans which showed the chemo was working so, in theory, my bones are now in a better condition that when I was 1st dx over 2 years ago as they have shown to be healing. I try not to think about ‘IT’ all them time and mostly I manage that, although I am luckily not in pain at the moment which makes that easier. I get on with work, play (more of that now!) and not doing anything else much different to ‘before’. I realise that this is now with me for the rest of my life and don’t really know how long that is but take great comfort from ladies like Val who have been living with mets for many years. However I still hate ‘scan time’ and ‘results time’ even more - we’re all the same Helen!
Good luck to you all
Nicky xx
Hi All, Haven’t posted on this thread for a while, just so busy. Just thought I’d let you know that my test results yesterday were very good. The tumour markers have gone down again and the liver and bone mets are stable, the onc was very pleased. I don’t see him again until Feb providing all is well in the meantime. Haven’t time to read all the post as I have a dentist appointment which I have to go to shortly (Oh, joy!!).
Take care of yourselves and I’m sending lots of love and hugs, Dianne x x x
Hi – I’m so glad this site is hear.
It is wonderful to hear that people get through the dark patch and get on with things. My ‘dark patch’ is a little less dark today – possibly grey rather than black! The pain killers are now (eventually) at the right level – patches and loads of tablets as well. I have a chart to keep track of it all! So very sleepy – but better than in so much pain yesterday. 8 days till op and counting (if you do not count today!!) just need to keep it together till then! After this intensive radiotherapy – which sounds like it will not be too bad from all your latest posts. – Thanks for your support and I hope in weeks and months to come I can support others who are in their grey or black patch! I would like to look back in12 years time and write the post ‘scottishlass’ recently posted!
Sadie
I’m glad you have found us, particularly this bone mets thread as we are able to share experiences and treatments that are specific. We all understand how you feel, I certainly remember the day I was told I had bone mets only too well! That was over 2 years ago and other than when I had chemo (for the local recurrence as well as the mets) I have felt pretty much the same as I did before my dx. I would say the ONLY thing that has been different is, like you, I enjoy and take pleasure in so many little things that I used to take for granted. A bittersweet change but at least I don’t ‘sweat the small stuff’ any more