68039members
358190posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

Hi

"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!!

Sadie

Highlighted
Member

Re: Bone mets - please join in

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.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

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!!!

Love Helen

Highlighted
Member

Re: Bone mets - please join in

Hi 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.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

Hello everyone, Myfanwy18 here,

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.

Love to one and all.

Myfanwy18

Highlighted
Community Champion

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

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

Highlighted
Member

Re: Bone mets - please join in

Hello everyone,

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 !!

Hope this helps.

Liz

Highlighted
Member

Re: Bone mets - please join in

I get the impression that because Zometa is so new, they're not really sure what the long term implications are. I'm afraid I think we are guinea pigs! But, it is a great drug and I'm very grateful to be getting a year of it. And I dare say if I need to in the future, I can go back on it. Good luck - I hope you get some answers.

finty x

Highlighted
Member

Re: Bone mets - please join in

Hi finty,

Thanks for quick reply. I've got a PICC line, but due to no more chemo required, he was thinking of having it out, esp I had developed an allergy to the statlock (the bit holding the PICC line in place), so lots of steri strips holding it in place at the mo - not a long term solution, I have to say.

It's a bit funny with my insurance company. Last time I was told that they're only paying it till Feb next year, but when I did further inquiries, what it means was that they do their policy reviews every 6 months and they'll review it again in Feb and decide whether they'll continue paying me.

I've heard somewhere that we can only on IV Zometa max for 2 years. But this is not true according to my onc, so I'm really confused now! Anyway, seeing him in Jan, next year (I don't know whether it's good or bad to have such a long gap!) and hopefully with a bit more research, I'll be armed with a bit more knowledge to persuade him one way or the other.

Thanks

xx

Highlighted
Member

Re: Bone mets - please join in

Hi m1yu

I have Zometa every three weeks, but I have read of bone mets patients in the US having larger, less frequent doses. Maybe it's worth having a look at some US websites?

There are a couple things that might be an issue - if you have a port I think you have to have it flushed every 3 or 4 weeks anyway, so it wouldn't seem to be any more efficient to have your IV less frequently than that. I would imagine having infusions less frequently means that you get larger fluctuations in the dose, and I would want reassurance of what the implications of that are for se's when the dose is high, and for maintaining bone mets when the dose is low - I really don't know how well they are able to calibrate it.

I remember you saying before that you were having some - maybe all - of your treatment privately. My insurance company would only pay for 6 months Zometa - although I am actually getting 12 months because the hospital is giving me the extra 6 months free. Then I go on to tbalets. I've been told this is standard practice with insurance companies for long term drug treatments, so that might be something else to check out if it applies to you.

Finally - great to hear you have no activity in the bone - long may it continue.

finty x

Highlighted
Member

Re: Bone mets - please join in

Hello to the new ones & earlier posters on the thread. Haven't been posting on this thread for a while, but have been reading all your posts. Have got a question for you, especially those have got bone mets for a few years.

Back from appt with onc today. PET scan last month showed no activity in bone and I don't have any symptoms at all. He said that he might change my IV zometa from every 4 weeks to every 2 months (8 weeks) some time in the future! Anybody heard of this before???? When asked him about switching to tablets, he wasn't so sure about that. He'd rather me having it IV every 2 months. Everyone?

Thanks

xx

Highlighted
Member

Re: Bone mets - please join in

Hi Dawn I was busy composing my post so missed your one above. I am sorry the Gabapentin isn't working so well for you now. You are a great inspiration to us all. Hugs, Val X

Highlighted
Member

Re: Bone mets - please join in

Hi Sadie, Don't know if we have covered it before but have you applied for Disability Living Allowance to help you out financially? If you need info just ask. Also a Blue Badge which enables you to park nearer shops and although you won't be able to drive you can still use the card in any car that has you in it. I have extensive bone mets but have not had any surgery and I wish you well.
As for the side effects of the infusion ( or similar drug). I didn't feel unwell really just a bit tired for the rest of the day which wore off the next day. I do think the first one made feel a bit different but I think I was very anxious at the time so it could have been that. Pamidronate takes longer to infuse than Zolidronate. I have been on both but I am now taking the tablet form which is called Bondronate.
I take different kinds of painkillers and take MST (morphine slow release) every day, plus Gabapentin for Nerve pain. But I have also tried other things for bone pain including patches and a Tens machine. I am pleased to say that I don't need the last 2 items at all now and the pain is under control completely. I know I am lucky in this respect and it has been trial and error over the years as I have had bone mets for almost 12 years. I also have liquid morphone (Oramorph) which helps with any breakthrough pain biut I haven't needed it for a while. Also although I am on a lot of different meds I am not at all fuzzy and your body becomes used to it through time. Also I was on 120mg of MST at my worst and am now down to 40mg a day so you can go up and down with the drug and my GP is happy to let me decide waht is best for me. If you want to PM me at any time or ask on here I am happy to help if I can. Love Val

Highlighted
Member

Re: Bone mets - please join in

Hi Sadie,

So glad to hear the results of your PET scan was good 🙂 I hope when you see your surgeon on Friday you will know a bit more about when it is all going to happen. (was the ref to spelling mistooks a bit tongue in cheek rofl)

Myfanwy I found the bisphosphonate infusions, both Pamidronate and Zometa, I did not have any side effects with the first dose of either of them - just goes to show we are all different. I did find initially when they were 4 weekly the pain would return before the next one.

I'm getting a bit fed up with pain increasing again - even though I thought at the start of gabapentin it was improving - as I increased the dose so did the pain increase!!! So tomorrow the mac doc has suggested I try fentanyl patches instead of the oxycontin. I find it strange how from time to time the nature of the pain seems to change. I'm just so relieved that the CT I had a few weeks ago was o.k. as it was a few years since I had one, otherwise I might be worrying about other things going on! as we do!!

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi - Thanks for the warning about the bone strengthening injections making you feel bad - I will prepare myself. But I think surgery will be first. Removing all the L2 vertebrae including the tumour and making me our of metal! I will be flat on my back for weeks and not able to drive for months!!Oh Joy!! But I just need to get on with it now. I can only sit for a few minutes and 4 different pain killers make my head very fuzzy (so, sorrry forr any speeling mistooks!!). Working is not an option at the moment - I work with Special Needs children and so need to move fast!! Not quite there at the moment! But post surgery I will get on with things!! Day time tv does not hold much excitment for me!!

Thanks

Sadie

Highlighted
Member

Re: Bone mets - please join in

Hi Nicky - yes Zometa tends to have side effects for the first dose too. I had flu like symptoms for about 24 hours - so have some paracetamol at the ready.

finty x

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Myfanwy18
It sounds like you are getting control again which I found really helped me. Your treatment is similar to many of us with bone mets and it shouldn't cause you too many problems, I hope. Depending on the bone strengthener IV you have you could feel a bit rotten after the 1st one, especially if it is Pamidronate (not sure if this applies to Zometa as well?) So take it easy, and I found I didn't have any noticeable side effects after that 1st one. It is also fairly normal to be scanned regularly during this stage so, although that is an anxious time, it does give a good guidance as to what is working. If you are able to keep working (as I was) it does help make you feel a bit of 'normality' in your life away from all this cancer crap! Good Luck with everything.
Sadie - that's good news about no further spread and I hope your op comes round very soon, sounds really painful. Good Luck as well.
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Sadie that is great news that there is no other spread. Will the surgery completely remove the tumour? Do hope they move quickly for you now so you can soon be out of pain.
finty x

Highlighted
Member

Re: Bone mets - please join in

Hi - My trip to London was good but it was bery difficult to travel as sitting is very painfull at the monent. However he was able to give me my PET scan rsults which shows no other sign of cancer - I am very relieved! So, only the crumbling L2 to sort out! I need the op soon as the pain is increasin daily and i am struggling with mobility and not functioning well!! Seeing my surgical team on Friday and my oncologist has also decided she would like to see me now! So I should have a full plan in a week and be able to take control again!! Thanks for being interested!

Sadie

Highlighted
Member

Re: Bone mets - please join in

Hello everyone,

Thank you for all your comments and support. Well it was with much fear I went to see my oncologist again today and my partner was wonderful, he is such a great support. My treatment is tamoxifen, a lot of radiation therapy and the drip once a months for bone strength. I will then have to have scans again in about 3 to 4 months to see how things are going and apparently it will be about a year before my oncologist knows how my cancer will behave and whether it has been contained. Somehow I now feel I have some control over my cancer if you all know what I mean. Also I shall return to work next week, they have been absolutely wonderful in their support and I think, obviously if able, working is a good tonic. Anyway keep you all posted and wish you all the best.

Myfanwy18

Highlighted
Community Champion

Re: Bone mets - please join in

Hi Sadie,
Sorry you've joined us, but welcome. Glad you've got an appt for Monday, it's awful your own onc wasn't offering to see you. Let us know how you get on on Monday when you feel up to it.

These boards have been a great help and sourse of info and encouragement to me and I hope they will be to you too.

I got my secondary dx in March this year after nearly 11 years from primary so still quite early days for me but you do start to adapt to the new normal and there's lots of inspiration on these forums.With best wishes to you and all the others on this thread,
Julie

Highlighted
Member

Re: Bone mets - please join in

Hi – I am 15 days post Bone Met diagnosis and it seems like a life time. I can really empathize with you Myfanwy. I find ‘doing things’ helps this terrible wait and trying to take some control. The Doctors are all for telling you what to do – but I want to deicide what I want to do. Hence, going for a second opinion, reading and research – and asking all you lovely ladies for your take on things! I know it is not everyone’s way of coping – but I would go mad if I just sat and waited! My Oncologist would not see me or even pencil me in her diary (!!!) until she had received notification in the post from my Consultant surgeon. And you know how long that can take – so I phoned up the Marsden and they slotted me in for an NHS Second opinion on Monday – I am delighted not to have to pay for this!

Not sure if this has helped you Myfanwy as everyone copes in different ways – but , someone said to me today – ‘don’t wait for the storm to blow over, learn how to dance in the rain!’ I like this and hope you find some good music to dance to!

Sadie

Highlighted
Member

Re: Bone mets - please join in

Thank you all for your comments, it has helped although I still feel very depressed at the moment. I'll find out more at my next appointment with my oncologist and get back to you all.

Myfanwy18

Highlighted
Community Champion

Re: Bone mets - please join in

Hi and welcome Myfanwy
We all know exactly what you are going through right now and it is a dreadful shock to be told that your BC has spread. I had nearly 5 years between my primary and secondary (bone) dx and had felt no pain whatsoever other than what I put down to a muscle ache when I jogged. As both Dawn and Val have said there are many treatments for mets and they should know - they have been around for a long time with them 🙂 Backing up what has been said you should be getting some form of bone strengthener (bisphosphonate) either by IV (through your veins) or tablet. I see you are also having Tamoxifen which is also used if your BC is hormone receptive.
In my experience I certainly felt better to cope with my dx once I had my treatment plan and I got started so I hope you also can see the light at the end of the tunnel soon - it is a very dark place when you are first told - I remember it well. Good luck with your next appointment and getting the right answers
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Hi Myfanwy,

I am sorry you have had this recent news from your doctors. It must have come as quite a shock. I know it did to me as I had my mastectomy in 1989....then in 1999 I found it had spread to my bones. But treatments have come on in the passed 11 years thatI have had bone mets. So if any questions arise and you want to talk about it please just come onto this thread. Dawn has covered most things but until you hear more from your Consultant there is nothing much I can suggest. Can you take someone with you go because I find a second pair of ears is very useful and make a list of anything that concerns you so that you remember to ask him/her. We will be there to help you as best we can. This is a great thread so "save" it to make it easier to go bvack to. Hugs and stuff, Val

Highlighted
Member

Re: Bone mets - please join in

Hi Myfanwy,

that must have come as quite a shock to you. Always dangerous I think when oncologists raise our hopes like that. My bone problems weren't giving anything away in my bloods either! and they were very extensive at diagnosis. Has he told you which parts of your bone it has spread to? You don't say what the monthly injection is. I wonder if you mean intravenous treatment. It is normal to be given one of the bisphosphonate drugs with bone mets, such as pamidronate or zoledronic acid(zometa). If he hasn't mentioned this I would certainly be asking. It is good that you haven't pain with it. Mine started that way and really over the past 8 years it is mainly the last 2 years that pain has become a problem. Near the beginning I did have some radiotherapy to my left hip and top of spine as they were giving a bit of trouble. I would also recommend that you don't ask your onc what your life span is likely to be. I have heard awful tales of some women being told with bone mets they have about 18mths. The treatment these days is so effective for bone mets that many of us have been around for a few years now. If you need to ask questions at all do make good use of the vast experience here in this thread.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hello everyone,

I'm terrified and tearful at the moment. I have had a breast removed together with lymph nodes due to breast cancer. My consultant kept telling me I would be fine and well by this time next year. He sent me for CT scan and bone scan but said he didn't expect anything to show up as my bloods were clear. However when I saw my oncologist last Tuesday she said it had spread to my bones. I am in no pain whatsoever and this seems a completely different view from my consultant. I have been put on tamoxifen as apparently my cancer is very hormone receptive, will have radiation treatment and an injection once a month. Does anyone have any advice - I'm seeing my oncologist again next week - what should I be asking.

Many thanks for any help.

Myfanwy18

Highlighted
Member

Re: Bone mets - please join in

Hi Girls
Interesting to hear all your stories, treatments wetc. I was disagnosed with bone and liver mets 6.5 years after my initial BC. Like everyone I was devastated and told I was just 'unlucky'..... It seemed no one was listening... From around April - July I was having funny pains in my back and around my tummy... anyway to cut a long story short I was finding it difficult to ride my horse without a back support and getting in and out of bed a nightmare. Eventually I had to give up hiking, riding, gardening....I really thought this was old age. I started taking industrial quantities of Diclofenac and paracetamol/codeine just to get through the day.. It got to the point I couldn't turn in bed or get out of the chair without help. I still battled to go to work though. Eventually after my diagnosis and now just had my 4th round of AC chemo+zometa I feel great!!!! no pain, well a little in my ribs, but hey, I can get out of bed, bend and stretch, get out of the chair, go hiking....a little gardening but no riding as need a hip replacement (LOL)....but not complaining. I'm just determined to get on with life enjoy myself and I may even contemplate a holiday......oh yes, I've just had some mega retail therapy too....
Wishing all you ladies out there well...
Jane x

Highlighted
Member

Re: Bone mets - please join in

Hi all
I have bone mets, diagnosed at same time as primary in may this year.
I was tried on Femara with no success and have just had my 3rd FEC. Things now appear to be going in the right direction. I also have Zometa at the same time. My onc is taking an aggressive stance (his words) on my condition in view of my age(50 now) and general health.I was devestated when hormones didnt work and I was told it was unlucky... not very scientific! However onc ordered a second biopsy on the offending lump and is was genetically tested and I am now a candidate for Herceptin and it explained why Femera didn't work. After FEC he is proposing Tax, Herceptin and Zometa. He has made it clear that i shall be on Herceptin and Zometa indefinately.
In a way I feel fortunate in my onc. He says I am an interesting case and he is not taking a palliative approach. So, I reckon if he is spending so much money on me I must have a pretty good chance of hanging on in there for a bit!
Anyone else had Tax and Herceptin? I am feeling nervous about the Se's I have felt fine on FEC. I have FEC100 apperently.
x sarah

Highlighted
Member

Re: Bone mets - please join in

Hi Sadie,

Please don't feel you have to apologise for asking questions. It's how we all learn, and I am very happy to answer. Prof wasnt a 2nd opinion. I have been fortunate for 20years to be under the Marsden. Original it was one of the famous twins. What a lovely man he was, but the Prof is great as well. Both men who know how to listen to their patients. Will you see him at the London Fulham Road Marsden or the Sutton one?

I also tried fentanyl patches, but unfortunately the changeover for me wasn't handled as well as it should have been and I reacted badly to it. But I certainly found the lozenges a huge help for the breakthrough pain episodes.

Do ask away if you need to, or if you are more comfortable using the pm system then do it that way.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi Dawn - My fentanyl is a patch. Lasts three days - and so far so good! Such a difference to yesterday when everythig hurt and I was really struggling!

You said you had been to see Prof at the Marsden. Was this also for a second opinion? If so, did he suggest something different to your local NHS centre? If so, how did you work out which way to go? (sorry so many questions!)

Thanks

Sadie

Highlighted
Member

Re: Bone mets - please join in

Sounds like you have got a result Sadie! What form is your fentanyl? I also use that as the fentanyl actiq lozenges and have found them a huge help - maybe not quite so effective now as they were when I first started with them. I do know that form usually is not given unless the patient is already on a morphine based medication and then they are used for breakthrough pain. Hope you get a good Macmillan nurse - they can be such a help.

Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi - Phew - Got some fentanyl to try and a referral to a Macmillan nurse. So I hope a bit of normailty can enter my life for the next few weeks whilst the final tests are done and then a treatment plan put together. I will let you know how the referral to the Marsden goes, Dawn. My whole spine removed may be one step too far - but glad it made you laugh! Sorry for not being specific enough!

Sadie

Highlighted
Member

Re: Bone mets - please join in

Hi Sadie, I had injection chemo 7 years ago and that was FEC. I am now on Xeolda/capacetine and have them from day 1 thru to day 14 and also vinorlbine which is 3 tabs on day one and 3 tabs on day 8.

I am also on Zometa and heceptin one iv every 3 weeks.

I have hardly any problems thankfully and those I have are related to constipation or diarhea trying to get the meds right to accomodate this hasnt quite worked out yet. Had terrible nausea for months before I started chemo but had to go in hospital for 6 days due to an infection and the nausea stopped then and never had trouble again.

best of luck getting your treatment plan on the way

Ann B

Highlighted
Member

Re: Bone mets - please join in

Hi Sadie,

when I first read your post above I thought you meant the whole of your spine!!! and was going to post I had never heard of anyone having that done LOL. I re-read some of your other posts and realised you were talking about your L2 vertebrae. All my spine has been damaged by bone mets since 2002, but currently my major problem is around L2/L3 but because I have a soft tumour outside them which is wrapped around the nerves that exit there. However I think with your pain meds they sound woefully inadequate. Usually for the sort of pain we have where the other meds don't do much some form of morphine is prescribed either as slow release oxycontin or mst - I couldnt get on with mst so switched to oxycontin. Then there is the other form of them which can be taken as needed usually something like 5mls at intervals till they can titrate how much you need as slow release. They are called oxynorm or oromorph (there are probably others). They do have a tendency to make you drowsy at first but personally I have found my body adjusts a bit. I am also taking Gabapentin (pills) and have found amongst so many I have tried that one is working well for me. There are also patches that last for about 3 days - fentanyl is one, and I suspect there are others. I have also found so much help from my macmillan doctor. I will be interested to hear how you get on at the Marsden
Dawn
xx

Highlighted
Member

Re: Bone mets - please join in

Hi Ann – Thank you so much for your reassurance – Our stories seem similar. 6 months of increasing pain in my lower back and no one listening. My three sets of Bone Scans came back ‘clear’ – it is showing as a 'cold spot' not a 'hot spot' and the hospital told me all was OK! A biopsy later and all is defiantly not clear! Anyway, I will follow up the pain with my MacMillan nurse and GP and try and get on top of it. I am far from this at the moment!
Interested to hear that the Chemo is tablets – how does this compare to the injections I have had previously? It sounds like it has worked really well for you – or, have you had radio also? Thanks again for taking time to write,

Sadie

Highlighted
Member

Re: Bone mets - please join in

Hi Sadie, sorry your results have come back positive for bone mets, it is scary in the early days but like the last time you had treatment once the next course of treatment commences you will begin to accept things and hopefully start to feel normal. I am only about 3 months into starting treatment and will be having my third tablet form of chemo on Wednesday along with herceptin and Zometa.

The early days of diagnosis was so long winded, well over 9 months, by the time people were listening to me and eventually giving me an mri I was exhausted both from worry, feeling generally unwell and the worst of all was the pain. I got a Macmillan nurse straight away and she guided me well through different pain relief and I am now pretty much pain free. I am on 50ml Zomorph, which is slow release morphine, twice a day. In the early days I was also on paracetomol and diclofenac and also ordinary morphine for any breakthrough pain, but I havet needed the additional drugs for about 6 weeks.

In a reasonably short time from starting treatment, I have gone from someone who could no longer walk, needed a stair lift to get upstairs and pretty much bed bound back to my normal self. Out nearly everyday and getting 2/3 day breaks all over the country.

If you have to go through surgery I am sure it will be done with the specialists full experience and I have read on this site of people having surgery successfully and getting their lives back to normal.

Best of luck, its early days for you but it wont be too long before your into treatment and back into control.

cheers Ann B x

Highlighted
Member

Re: Bone mets - please join in

Hi everyone! - Just wanted to make contact with you all. I have posted on other threads – but this seems to be the place to be!

Diagnosed with Spinal Bone Mets 9 days ago (but seems like a lifetime!). Initial breast cancer diagnosis and treatment in 2009 – so do not feel like I have had much time ‘off’. CT scan looks clear – PET scan on Thursday to check. Off to the Marsden on Monday for a second opinion! My local team is looking at the surgical removal of the whole vertebrae – a massive op, so was wondering if others had had this procedure for a met?

Also, on co dydramol for pain, but not really covering it! I was wondering about the Gabapentin that I have read several you are using? Is this a patch or tablets? My GP did prescribe Tramidol – but literally sent me to sleep for 12 hours! Any suggestions?

Thanks in advance for your welcome to ‘bone mets world’! And thank you to those of you who have helped me find you all from my other postings!

Sadie

Highlighted
Member

Re: Bone mets - please join in

Hi Deadgirlwalking

I was diagnosed in 2008, aged 42, with mets in my spine and liver. I didn't have any symptoms from the mets. I had a mastectomy, chemo and herecptin. I now have herceptin, pamidronate and tamoxifen. Like you I worked through most of my treatment and have continued to work, and survived a round of redundancies. I can only echo the feelings that you and others have expressed when diagnosed. It takes a long time to get your head round it. I use work as a distraction, it makes me feel normal. I am relatively new to this site and I find it a source of hope and inspiration.

Highlighted
Member

Re: Bone mets - please join in

Bumping this up for Sadie.

finty x

Highlighted
Member

Re: Bone mets - please join in

Val it sounds delightful - I was such a keen gardener before bc, and hope to get back to it next year. We are lucky to have very big garden (especially for London) but it does mean you don't see much from the house, and at this time of year it isn't very tempting to be outside a lot. So maybe when I feel more confident to plan for the future a lovely little courtyard garden would suit me better - I don't think the dogs would be very impressed though! It's so nice to be thinking about normal things 🙂

finty x

Highlighted
Member

Re: Bone mets - please join in

Hi Finty, I still have slugs and snails in my tiny garden but the hedgehogs have certainly reduced the numbers of them! I don't feed them cat food every night so that they go hunting for them. I am a bird lover too and right now I have goldfinches, coal tits and a robin at the feeders. It costs me a fortune in bird food though as I buy the best for them from the RSBP visitors centre in Fife. But it does attract a wider variety of birds and they keep coming every day to see what is on the menu....I even buy currants just for my blackbirds and robins! Good to see you doing so well. LOve Val

Highlighted
Member

Re: Bone mets - please join in

Welcome dgw - glad you've decided to join us on the thread.

Oh Val I'm very jealous of you having hedgehogs in your garden - not least for their capacity to munch through slugs and snails. But with two rather fierce terriers patrolling our borders, we don't get many wildlife visitors (not twice, anyway!).

finty x

Highlighted
Member

Re: Bone mets - please join in

Hello deadgirlwalking, Welcome to this thread and the site. When I was diagnosed there was no site like this and I felt quite alone at times. Family and friends are all very well but sometimes you need to express your fears or communicate with people who are going through something similar. I didn't "post" anything for a long time and it took me ages to know how the site worked but I did read the posts that caught my eye. Now I am on here most days and drop in and out and read my "saved discussions" first to see how everyone is doing.
I see you live in Scotland. I don't know where you are but I live in Edinburgh. There are a group of young ladies your age who meet up regularly and you are welcome to join us if you care to. There is also a group who meet up in Glasgow and also join in the one here too! Send me a private message if you want at any time and if you want to know how to meet up with anyone.. I am so pleased to read that you have found some comfort in my posts. I was 39 when I was first diagnosed and I remember thinking that I would never see my daughters grow up as they were only 7 and 14 at the time. They are now 28 and 35!
It does give you a different attitude to life. As for stopping to smell the flowers...I was doing that in the wee small hours....watching 2 hedgehogs in my garden tipping up a saucer filled with cat food and even licking the plate! Then a fox visited and cleaned up the bird food I had put out for the ground feeding birds. Now I couldn't do that when I was working. I gave up work when I got bone mets. Do you know you can apply for Disability Living Allowance (DLA) now that you have secondaries? PLease join us on this thread and let us know how you are doing.
Everyone deals with their cancer differently. I am very open and if anyone asks me how I am I just tell them the truth and explain that secondaries do not go away. I am glad you have found us, but sorry you have had to join us, if you know what I mean. Much love to everyone on this thread. Sun shining where I am. I hope it is where ever you are. Val

Highlighted
Community Champion

Re: Bone mets - please join in

Hi
deadgirlwalking - you sound as if you have the same attitude as I do! A ticking timebomb is how I describe my mets but, like you, I do make the most of everyday and 'don't sweat the small stuff' anymore. Good luck with your current treatment, I too am on similar although had my ovaries ablated 18 months ago so I didn't have to stay on Zoladex. And good luck with the party - may you have many more celebrations 🙂
Sarah - I too had FEC when I had my secondary dx and know how you must be feeling. I had very good results with it and this definitely helped me cope with all the cr@p that chemo sends us! I hope you pick up in a few days (I found that I usually did after day 5 or so) and you can make the most of your 'good' days in between sessions.
And thanks again Val for giving us all hope and inspiration when you have lived with secondary BC for so long x
Nicky x

Highlighted
Member

Re: Bone mets - please join in

Hi Sarah - it's good to hear from you, I was wondering how you were getting on - 2 down 4 to go. Hope the FEC se's won't be too bad for you, and you'll soon start to feel that lump reducing. Rollercoaster is exactly what it is - I found about day 4 or 5 on FEC I would get very tearful, and then the next day I would be fine - maybe the steroids, who knows, but it can be frightening to have so little control over your emotions. Take care - hope you get some sleep tonight.

Vanessa xxxx