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Bone mets - please join in

Thumbie
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Re: Bone mets - please join in

Hi Janine,

How awful. I don't think I've had pain as bad as this. Do you have other things to take as well as the gabapentin? You shouldn't be suffering like this. I had oramorph plus paracetamol when I was in bad pain from mets in my hip, before and after radiotherapy, and eventually on slow release morphine. This was prescribed by a Macmillan nurse from Hospice at Home. Do you have one? Mine is available through the weekend.

I hope they get it sorted soon.

All the best
Ruth

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Re: Bone mets - please join in

Thank you for your replies so far 🙂

I had radiotherapy to my spine ( T 4-10) last Monday and haven't been too bad - so far! But my nerve pain has got worse from my spine on the left hand side through to my chest. It feels like red hot pokers in my skin and last night I was screaming in agony! 😞 I am already on Gabapentin.

I am also SO fed up with sleeping upright on my sofa as it hurts too much to lie in bed. This has been for 2 weeks now!

Is anyone else in/ or has been in this position? I desperately need cheering up please.

Best wishes to you all,

Janine xxx
Thumbie
Member

Re: Bone mets - please join in

That's good news Birgit. Letrozole seems to be working for me as well. I have mets in hip and spine. I hope you are not getting pain from your hip. I think swimming is excellent exercise for aching joints as it is not weight bearing. I have been trying to swim each week, but only in the trainer pool, not in the shingly sea! More power to you.

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Re: Bone mets - please join in

Val, I agree, they really have no idea! I suppose to the consultant etc. 'bone mets' is better than other mets, but not for us that have to suffer from them. Glad to hear though that your brain scan was ok. Is your poor mouth a result of years of zometa?

Sorry to see that a few new ladies have had to join us. I've been absent a bit, enjoying the weather, despite the fact that my lymphoedema arm does not. But been swimming a lot, which helps a lot. Hubby has to help me in/out of the water - depending on tide there is often a steep shingle bank to climb up. Now have mets in left hip, but apparently stability is not affected, so no fear of suddenly breaking my hip. Have further appointment in September to discuss further options. Good news is though that cancer markers have not gone up, so Letrozole is obviously doing its bit.
lucinda
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Re: Bone mets - please join in

Hope they come up with some answers for you and a decision on the best treatment. Will be thinking of you. Just bone mets!...they have not got a clue as you say. I have just returned from my 100 mile round trip for rads ( the 4th this week and 2 more to do next week). The radiologist could not believe I travelled so far but even if I had treatment at my local hospital is does not have a radiology unit. Oh well almost there and hopefully the pain will reduce. Take care and enjoy your weekend.


Lynn xx

Thumbie
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Re: Bone mets - please join in

Best of luck Val. Hope they get a definitive diagnosis and treatment plan.

Ruth x

scottishlass
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Re: Bone mets - please join in

Got a phonecall tonight from the Dental hospital. I have to go in tomorrow morning to have a biopsy done of the exposed bone in my upper jaw. I was at the Dental hospital yesterday and they were looking at the recent CT scan of my head which showed scull mets. Now they want to see if the exposed bone is in fact osteonecrosis of the jaw or (just!) bone mets ( as has shown up on my ct scan). Having bone mets now in my cheek is not something I wanted to hear rally especilly as I have been feeling better. Hey ho. If only those without cancer realised just how much of our everyday normal life can be taken up with side effects/ treatments/ recovering from/ waiting for results etc. They just do not have a clue do they!

Coco0896
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Hi all and thanks to Lemongrove for your comments. I was diagnosed with multiple bone mets a week ago and have been told by my Onc team that they will complete DS1500 form for me, I was told I have 2-3 years left which I know some people don't agree that I should have been told this but were they doing me a favour so that I could get some benefit help, don't know but I cannot believe that any one could say that this is only bone mets! It's outrageous some people have no idea what it is to be told you are stage 4 cancer and can not be treated, these people should try living in our shoes! Xxx
myfanwy18
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Hello Ladies,
Don't post often but just to say got results of scan today. Scan fine, no change. Breast cancer recurrance was just some, even just one, cell that had got caught in "deadend lymph vessel near skin" from original op so another small op and change of tablets. Onc is changing me from Zometa to Denosumab to. Does anyone have experience of this drug? I'm jumping about the room with delight because the Onc said the op would be before I go to Cornwall on holiday at the end of the month so I'll have a care free (well relative with secondaries) time. Claire xx

belinda
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Re: Bone mets - please join in

Agree with 'only bone mets' comments. And once you have bone marrow involvement it restricts your treatments. But I read on the Secondary forums just recently, someone's Onc (I can't remember who, sorry) had told them they were not concerned about marrow involvement.
Thumbie
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Re: Bone mets - please join in

Thanks for your reply, Belinda.

Lemongrove, I am flumoxed by the DLA thing. How can someone be eligible for a DS1500 one day and be denied one despite having the exact same condition 3 years later and further into the prognosis? It is great that some treatments can hold things for a while but it's no cure and not a given. There are also invisible disabilities with bone mets, such as pain and fatigue.

Have the doctors been pressurised into denying DS1500 to bone met patients?

dawnhc
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Re: Bone mets - please join in

HEAR! HEAR! Lemongrove - I think I might just thump anyone that said that to me. I think the fact that my pain team at the Marsden were prepared to put me forward for an intrathecal drug device earlier this year at least tells me they were taking my pain issues pretty seriously.

Janine your experience sounds quite shocking especially that they weren't able to come up with any solution to help over a period of 2 hours. Sounds like an awful lot of indecisiveness. Interestingly I had a recent experience with sedatives and an MRI scan. Because I experience extreme pain when I have to lie flat on scanner beds I did ask my onc this time for his thoughts on what I could do to manage this and he suggested perhaps a sedative as obviously any more pain meds weren't going to achieve anything. So on the morning of the scan I took one Lorazepam and an hour before the scan another one. Brilliant all went well - no pain!!! Let me wind forward a couple of days....OH remarks on odd smell in lounge and wonders if pigeon left its calling card. I was surprised and asked 'what pigeon?' which prompts him to say he knew I was losing it!!!!! Well I don't remember any pigeon getting into our lounge and wonder if he is getting confused and it happened while our daughter was here and I hadn't witnessed the visit at all LOL. Move on another couple of days and I suddenly realised I hadn't heard from the Marsden about the MRI scan and if they had been able to arrange for the Medtronic rep to be there to make sure my intrathecal drug pump restarted again after the scan. Because of all the magnetic fields in the room it does stop the pump working and it has to be rechecked afterwards to see if it has restarted..... are you confused yet... have you realised I said I had already had the MRI scan...I started to get confused because half of me knew the day had passed and I remember Peter taking me but I recall nothing after that. Then I recalled some years back after having a hickman line put in and being given sedation for it and a nurse saying 'you won't remember anything afterwards'!!! and realised this is what had happened. The pigeon had visited us after we got back from the hospital so that memory was wiped as well. I even went so far as to ring the Marsden MRI dept and ask them to check if the Medtronic rep had been there after the scan and checked my pump. They took this quite seriously and passed it to the Superintendant of the Dept who called me back to assure me the rep had been there - gave me her name as well.
I'm not sure what to do when I next have a scan. It was a huge relief not to be in pain - or at least not to recall it - when having a scan but just a bit worrying that chunks of memory can be lost.

Dawn
xx

Lemongrove
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Re: Bone mets - please join in

It make me so cross to read on nother thread that people are being denied the opportunity to claim DLA under DS1500 rules because their doctors say they "only have bone mets". These so called medical professionals should know better. Bone mets can be extremely serious indeed. Bone mets in the spine can constrict the spinal cord and eventually cause paralysis and incontinence. Skull mets can grow inwards towards the brain and cause what the medics refer to as concomitant progression.
In my view, it's a shame that medics who tell a patient they "only have bone mets" can't be made to live with bone mets themselves, just for one day.

belinda
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Good news from your scans Thumbie. I (think) tumour markers are very individual and it's the overall trend and what is considered normal for you which the Oncs go by when trying to guage if a treatment is still working. My markers were considered very high (for me) just before Christmas when they suddenly jumped into the hundreds. But my markers are normally hovering around the 30-50 mark when a treatment is working. The CT result showing the bones healing is great news, it's a shame about the hips but isn't that just typical! I used to be so fixated on my marker results but I was told the same as you, it's how you feel which is important.
Hi Janine, I had some emergency rads over Christmas and was able to use various wedges and supports the staff had to hand as it was much too painful for me to lie flat without bending my knees. I also used the instant relief liquid Oramorph, prescribed by one of the pain team at my hospital and was able to time the drops so I had some pain relief when I needed it. I had some increased pain at first, days one and two but the rads did work. I felt much better by the end of the week and before the rads I was in such a lot of pain. Hope next week goes well for you.
Hi Joanne, I had some pain issues on starting Arimidex so Exemestane could well be the cause of your recent pains.
Hope everyone is finding treatments effective and enjoying summer.
Thumbie
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Re: Bone mets - please join in

Hi All, I'm really pleased- found out today that my recent CT and bone scan show some possible healing in my spine (although a slight bit of progression in my hips). Also no sign of anything sinister in any soft tissue or organs.


Just one little niggle. I had the scans because the tumour markers were up. The oncologist today said that although they were high they were not rising but hovering around the 1500 to 2000 mark. That sounds mighty high to me, but my oncology team seem to go on how the patient feels and are happy for me to continue on letrozole and denosumab. That's good, because I don't want to change treatments and run out of options. But I'm a bit worried about those tumour markers. Anyone got thoughts/experiences?

lucinda
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Janine so sorry to hear of your horrendous experience. I did have excruciating pain in my spine when first dx so can really smypathise. I am having rads this week to my left pelvis and have not experienced any increase in pain, I also hads rads to spine an right hip and did not suffer pain flare due to the rads. I found great benefit to my spine following the blast of rads.
Do you have any morphine type medicine for breakthrough pain you can take prior to treatment. The rads treatment is very quick,usually just a couple of minutes, but the bed is flat. I would think they have methods of treating people with mobility problems, I always have problems getting off any of the scan beds but I have kind of worked out how to roll off rather than standing straight up (keeps the staff entertained ! ) but have never become immobilised, that must have been really scary. I really hope it goes well for you and they have a plan.

L xx

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Does anyone know if a blast of radiotherapy makes back pain a lot worse at first? My treatment is happening next Monday.

I have recently been feeling so much better on the painkillers and am concerned about going back to the horrendous pain I was in, especially as I mainly live alone.

Many thanks,

Janine xx
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Thank you very much for your reply Thumble. The radiotherapy department do know what happened as apparently the staff were traumatised too! I find it very hard to believe that they were fairly clueless about what to do and I was asking for a strong painkiller or sedative and received nowt!

I can walk and got on to the table quite easily, but getting off felt like my back was being broken!

If they haven't got things in place next Monday, then I am doing a runner! Well, at least a slow walk out the door! 😉

I will let you know how I get on.

Janine xx
Thumbie
Member

Re: Bone mets - please join in

That's very worrying for you Janine. Would it be possible for you to have a very powerful painkiller, or even a sedative, just to get you through this process?Maybe you could phone the radiotherapy department and tell what happened. It may be that they have equipment and specific tables etc to help manoeuvre patients with extreme mobility problems, after all this must occur quite frequently.
All the best for your treatment. I found that radiotherapy helped when I was getting pain in my back and I was eventually able to stop the painkillers. It didn't kick in until a few weeks after the treatment. So don't despair if you do not get immediate relief.

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Hi Everyone,

I was diagnosed with breast cancer (Stage 1, Stage 1) in March 2010 and had a lumpectomy, radiotherapy and Tamoxifen.

On 5th July this year I was diagnosed with Stage 3 breast cancer and bone mets in my spine. I was very shocked and overwhelmed by how unbelievably painful bone mets are! I was unable to do anything due to the horrific pain!

I am on Arimidex, lots of painkillers and have had one bone strengthening injection in my stomach. I had the radiotherapy planning and tattoos last week, but it took 2 hours for the radiographers to get me off the CT scanner table as my back pain was so severe. I was pretty traumatised and shocked that the medical staff didn't seem to know what to do. Has anyone else experienced this?

I am due to have radiotherapy next Monday and am understandably scared now.

Janine xx
Tylerrose
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Morning Ladies feeling a little wobbly this morning shaky but all inside really wierd feeling think the chemo might be kicking in a bit although it was only Friday don't feel poorly but really a queer experience, but ill get on with my day hopefully it will go away. Xxx
joanne130
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Re: Bone mets - please join in

Hi,

I don't post very often but just to say I finished 6 cycles of taxotere at the end of may and scan showed it had worked :). Was a little rough and finger nails have taken a battering but I got through it ok overall. Have now started on exemestane, so hope it works forquite a while! However, I seem to have developed a pain in right hip/leg/knee, and although I know this pain started just after starting exemestane (mid July) i'm concerned it could already be progression, any advice would be appreciated.

belinda
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Re: Bone mets - please join in

Yay glad the brain CT was all ok Val. Have fun driving the new car. An all wool rug for £2! And I was thinking whoever bought it for £60 had a bargain.


Seeing my Onc on Thursday. He will receive my tumour markers when I have them taken early this week. I finished Doxorubicin a few weeks ago and I know it was working well mid cycles so I'm really hoping I can now have a chemo break...grow my hair back etc etc! If anyone is offered this chemo I must add I found it ok, no sickness at all and no crashing tiredness. My bloods were always ok by the next cycle.
x
doodlecat
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Re: Bone mets - please join in

Thanks Meg, that is a good point about changing gears as I do have very painfull hands and a dodgy arm. I had an automatic capri many years ago and I loved it.

Off to the footie now in the piuring rain.

June x
Coco0896
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Re: Bone mets - please join in

Good afternoon everyone, Rose was so pleased to hear you had a better day yesterday and its nice to talk to you here too! dawn thank you so much for your words of encouragement and what an inspiration you are, I felt so much better reading what you and Val said and I will carry that with me as I get more used to this over the next few days and weeks, I feel so much better today and ready to kick the a..e of this nuisance in my life. re mobility cars June, I drive an automatic Car now, well it is a dual car a Citroen and I love it I used to and still do spend a great deal of my working life driving and so saves your knees and your hand changing gears, I would not go back to a manual car now!! Xx
doodlecat
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Re: Bone mets - please join in

Val so pleased you have a brain and even better that it is met free.

I was looking (online) today at mobility cars. Automatic might work for us as I am trying to get my husband to learn to drive. At the moment I have to drive myself the 230 mile round trip for treatment.

I believe your profit is 2,900 per cent. Maybe you should get youself a wee job in the cabinet looking after the country's budget!

June x
scottishlass
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Welcome to ll the new ladies. Yes I remember well just how devasted I was when I found out I had bone mets ten years after my original diagnosis. I did not know a soul who had bone mets and unlike my first diagnosis I was not put in touch with anyone who had bone mets. I didn't "find" the BCC website until a few years later when I was looking up information about something. From that day on I met new friends on here who are now my"old" friends. Too many to name them all but Dawn, Vercors, Belinda above are a few of them. It helps so much be able to talk to people in a similar position who know exactly how you feel and being abe to talk to someone who isn't family is great because we can be really open with each other without upsetting our loved ones.
I have had bone mets for 14 years now. I have them in my spine, ribs thorax and pelvis and recently found out that they are now in my scull too. As for prognosis I was given a 50% chance of surviving 2 years and that was in the year 2000....Baloney!!.....they just do not know and that is the honest truth about it. There are drugs out now that were not around when I got bone mets in 1999.
My latest news is that I went to see a radiologist to discuss radiotherapy for my face as I have mets in my left cheek and this may be causing the numbness I have. But the numness has gone from below my eye and cheek and is now only from my lower lip to my chin. Unfortunately I have osteonecrosis of the jaw in the same area near my cheek so she is reluctant to give me any radiotherapy at the moment and will review me again in Septemeber. I am quite happy with this decision as it is not causing me any discomfort whatsoever and it doesn't stop me from eating drinking or talking!
The good news was from the CT scan is that they did find that I did indeed have a brain....and luckily my brain has no mets as yet. I am feeling really well at the moment. I got a new motobility car on Tuesday. I had a Renault Grand Scenic before but now have a VW Golf automatic. This willtake some getting used to but already it is improving things for me because I do not have to use my left leg for a clutch nor do I need to pull on the handbrake as the car does everything except make me a cafe latte! I love it already and it is smaller but powerful enough to tow my caravan.I am getting a towbar fitted next week. As chemotherapy got in the way for the first part of the year I am looking forward to getting away while I am feeling so good.
I even got back to making food for the family yesterday and although it left me completely exhausted I managed to regain my puff while it was cooking in the oven. It was chicken enchilladas with sour cream on the side and some salad. I made so much there is enough for today too so that is good as I do not feel like cooking again!
My Dad hasn't been well and not allowed to drive just now. He lives across town from me, about 10/12 miles and that means I need to do his grocery shopping for him. I have offered to take him but he says he is happy to stay at home. My younger daughter is moving all her stuff from the house she rented as they have new tenants so my husband has been using the car to move boxes and boxes and boxes....Now I must tell you something funny. Months ago I purchased a large all wool rug from a charity shop for my daughter's house as the colours cream and white matched her suite. I told her just to sell it so she advertised it and sucessfully sold it today for £60 as she needs the money as she has been made redundant from her job. I am smiling because the rug only cost me £2. Now who is a mathematician and can tell me what % profit she made on it! . LOve to all you lovely ladies on the best thread on the BCC site. from Val

Tylerrose
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Re: Bone mets - please join in

Hi ladies I also got the double whammie on first diagnosis, lymph nodes neck and chest bone mets in spine and left hand ribs, but all vital organs clear which was a blessing, had firt treatments Thursday Friday this week still feel fine today no reactions thank goodness chemo hemp x 6 plus herceptin and perjeta , so I'm really feeling home that the treatment will work for me and keep me going for many years to come, Coco keep the faith faith luv and Dawn your journey gives us all hope it's great to read your story l think you're a Trogan and an inspiration to us all, love to all you ladies and keep smiling 🙂 xxxx Rosr
dawnhc
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Re: Bone mets - please join in

Hi Meg,

I'm another one that has been knocking around these forums for some time now! I think you are wise to give up the nursing job - it is very hard when coming to terms with this disease to give yourself to others. You need to concentrate on you and your needs. Like others have said here, at first it is hard to get the thought of cancer out of your mind. I found it was like a spiral going round and round and I couldn't escape the words cancer going round and round in my head but gradually I realised I was going longer and longer without thinking about it. My first diagnosis was way back in 1990 with a gap of 5 years before it returned, but then it was every 18mths - 2 years of recurrences until in 2002 when I was diagnosed with very extensive bone mets. They responded really well to treatment including herceptin when they discovered I was her2+. The response was so good that they couldn't find the ones that peppered my skull when they did the next bone scan! I really thought with the 2ndary dx I had just months to live and every year I am amazed that I am still here. Admittedly now pain is becoming a problem but when I think I am in my 12th year with bone mets I haven't done too badly 🙂 I do feel very cross with oncs that tell their patients they have only months or xx years left. Why not tell patients like some have said above, that they have patients who keep going for years. I hope you are going to be around with us for years to come, encouraging others who come looking for reassurance.
Dawn
xx

Coco0896
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Re: Bone mets - please join in

Hi Lynn good to hear from you, I will not return to my Nursing job as cant cope with taking responsibility of being in Charge of lots of Residents and don't feel I can give any of myself to them now, I know that sounds awful, just being honest. I am continuing with my business which is training, it's what I love to do and can't imagine just sitting around all day, am sure as time goes by I will like you be able to think about other things, but just am not there yet. Am so glad to be able to be here and talk to you all as we are all in similar situations, so thanks for that. Meg xx
Lynnq
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Hello coco......I also am in a similar position, diagnosed with bone mets and shadows in the peritoneal area soon after initial diagnosis. My Onc told me that 2 -3 years was the official prognosis but that he had ladies in his care who were five years on and still going strong......
no chemo for me either......he said...."maybe sometime down the line should it prove necessary". He put me on LETROZOLE and I have been taking it for eight months now. My last scan showed no spread, my bone mets (they are in upper spine and pelvis) are improved and the peritoneal area is -"almost completely resolved". Very encouraging!
I still have wobbly days but don't think about it all the time anymore ..... I retired one week before my diagnosis (I was devestated all those retirement plans out of the window I thought - but they're not of course. - just altered.) keep very busy and like a lot f retired people I often wonder how I found time to work.
Coco0896
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Morning all, hope you slept well. I have woken this morning and although this whole situation remains in the forefront of my mind I feel less panicked than I did yesterday. One thing that did make me laugh was that until this change in circumstances I was entitled to no benefits at all then all off a sudden I am entitled to DLA amongst other things, how we are treated differently with a change of a few words! Hope you all have a peaceful day xx
belinda
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Hi Coco and all, I agree with all the posts above. I remember that first thing on your mind when waking moment too. It does pass and although life can never be the same as it was before diagnosis we do all muddle through and we live with breast cancer, with the emphasis very much on living.
I was diagnosed with bone mets from the start too. I was also given Tamoxifen as my first treatment. I hope it works very well for you.
Have a good weekend all. x
doodlecat
Member

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Magda, you are correct that feeling on wakening does pass and I didn't explain that. Apologies if that caused any distress. It is not the first thing I think of any more.

June xx
Magda
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Hi Coco
I too was diagnosed with mets to bones around same time as my initial diagnosis 2 years ago They said they treat this spread as more of a chronic illness nowadays . I'm just back from 3 weeks in Thailand so I'm not letting the b***er stop me doing the things I want to. I too was devastated when told and demanded to know how long had I left but the onc just kept saying we don't know ... You could be here in 10 - 15yrs there is no way of knowing. this awful time will pass and one morning you will wake up and it won't be the first thing you think of and that's the truth? Take strength from wherever you can find it.
Magda

vercors
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Coco,
When I was diagnosed with secondary over 18 months ago and like many others my world crumble. Just like you I was told a few short years... I regret having asked the question. As the others have said, oncs do not know. Even short temr they don't know. A lady on this site was given two weeks to live before Christmas 2011, she was still with us for another 6 months.
Another saving grace for both you and me is that the mets are "only" in the bone and haven't affected any vital organs. For that I do consider myself very lucky.
I understand how upset you must me. Come back to talk to us, this group helped so much with my sanity.I am still working full time, work that involves travel. I also travel for holidays, so there is can be some of normality in our ives.

Big virual hug.

doodlecat
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Coca, it is too soon for you to get you head around it. One of the worst thngs for me was on wakening and having that feeling that sonething is wrong and it takes a few seconds to remember. It was like being given the news afresh after every sleep no matter how short that sleep was.

You do get used to it. For me I have coped well. The only time I don't is when my treatment is being messed around and I get very frustrated. I wont lie to you though, for me, it is never out of my mind. It is just avdifferent way of living. Life will never be the same but there are al ot of positives too. Living for the moment and appreciating each good day. A lot of cliches but true (for me anyway).

June x
Coco0896
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Hi to you Nicky, Katie, June and Mel, thanks so much for your words of support, they mean so much and of course what you say is true but I suppose the news is still raw and feels unreal currently and I will get my head around it in due course and perhaps follow your advice and read the whole of this thread to learn more and be inspired, that will be my goal over the next couple of days. Thanks again xx
Buffy3
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Coco, just to say I was diagnosed this time last year with the double whammy. I was put on tamoxifen...1st line of treatment but soon ended up on chemo which has blasted the little uggers. I am also back at work and living with this disease. Ok a few aches and pains from the new drugs am on but life is continuing as normal. My onc and breast care nurse see this condition more like a chronic illness...treatable. I am suprised your onc put a time scale on things, mine vaguely said many many years. The treatments are developing all the time and if one fails there are many more in the wings. Take care, the ladies on this forum are amazing and supported me through tough times. It does get easier. Mel xxx
doodlecat
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Coco, I can't really add to what Katie and Nicky have said.

When I was first diagnosed I was heartbroken and it does take a bit of getting used to. I also read this whole thread there are so many inspiring people.

I only found out what questions to ask about treatment, etc. through everyone on here sharing their experiences and giving advice.

June xx
Katie2002
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Coco - I am so sorry you have had to join us. I have bone mets in my spine and pelvis. I was dx with secondaries last JUne six months after my primary dx. I can't believe your Onc to be honest! No one can put a time frame on your life. Oncs however great they are - are NOT God! They do not have a crystal ball (I nearly wrote crystal balls!!!). You have to remember that what you have is treatable. Many inspiring ladies on this site have lived with this disease for years. A friend of mine who comes on this thread always says we live with a condition and we just get on with it. That's the way I think of it. I admit to be being lucky so far as I have had no pain so far. My last scans showed that my mets had reduced. Things are possible! I am back at work and enjoying it! What I am trying to say is - try and stay positive. There are lots of treatments and people out there with fantastic inspiring stories. Are you still starting chemo soon? Good luck with it all. Let us know how you get on - and remember there are lots of us out there just getting on with our lives! You aren't alone.
No doubt someone with more experience will be along in a bit too.
Sending you a BIG virtual hug xxx

nicky08
Community Champion

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Hi to all bone mets ladies and especially those who have had to join in recently. We all understand how devastating that diagnosis of secondaries is so you have come to the right place for support, information and just a place to have a moan if needed.
just to say to all of the newbies, including Coco0896 who has just posted, that the statistics for surviving with bone mets are way out of date and its very difficult to put a number of years to your prognosis - Im surprised your oncologist gave you such and 'accurate' length of time! There are many of us ladies living with bone mets for 5, 10, 15 years after diagnosis and that number is increasing as better treatments become available. From reading some of posts on here you will see that this is the case and also how each treatment can vary depending on your type of BC and also your oncology team so do ask any questions that you are not sure about, one of us is bound to have some sort of answer.
Good luck to all with scan results, treatments etc and hope you are all a bit cooler than yesterday, except possibly for Val where the weather looked not so hot.
Nicky x

Lucy_BCC
Member

Re: Bone mets - please join in

Dear Coco, I am sorry to read your news and I am sure your fellow users will be along very soon with support and advice for you as you have asked, please also remember that our helpliners are on hand with further support, emotional and practical so do call to talk things through on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays

The following link will take you to the 'BCC secondaries' pages where there is lots of further support ideas and information which I hope you will find helpful:

http://www.breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campaign=secondaries

Take care

Lucy

Coco0896
Member

Re: Bone mets - please join in

Good Morning Ladies, wonder if you mind me joining in as could really do with some advice and support , until yesterday I presumed I would be in the August group for chemo but sadly this is not to be as Onc told me yesterday that I have secondaries in my bones, in my back and pelvis, I feel like my whole world has fallen apart. He has given me between 2 and 3 years to live which is a shock in itself. I will start on Tamoxifen today and shortly the Denosumab injection. Any advice would be much appreciated. Many thanks xx
belinda
Member

Re: Bone mets - please join in

Hi zara, I'm sorry to hear about the hip ops. I was diagnosed with bc and bone mets when my right hip spontaneously fractured. I had a hip replacement. I use one crutch for any distance, luckily I'm ok round the house. I 'treated' myself to a black crutch from the cool crutches site. One of the good things is it's a silent crutch, none of the usual loud tapping noise before you see me turn the corner. Hope the letrozol has not caused too much stiffness. I was on Arimidex for a while, with the jabs to stop my periods and had much stiffness at first but it did ease up a little after a while. I expect it was especially hot in Hastings today.. . x

Hi June, I'm sorry to read of your contrast leak, my last CT was a little unusual. The needle came out bent double and the staff had to record it and take pics. Hope the leak has not caused any follow on problems and it's less painful asap..x

Great to read you are in the Stable Mabel club vercors!..x

Happy Anniversary Lucinda, I had many years with Capecitabine, I hope it works really well for you..x

Best wishes Val, hope the rads went well today..x

Hi to all, hope it's a little cooler tomorrow..x
zara68
Member

Re: Bone mets - please join in

Thank you belinda for replying. A big hello to you as you are a very very lucky person to receive three helpings of hastings delight.
My treatment of letrazole, zoladex and zometa plus two hip ops and radio has greatly improved my life. The cancer has stabilised and i am able to go out and about some afternoons and i am quite good in the evenings. I am a lot better than i was, but I have ended up disabled and needing a wheelchair for distances beond 200m. I also get care three times a day to help me and my son.
How about you?

vercors
Member

Re: Bone mets - please join in

Absolutely loved the Pilar of the Earth and the eye of the Needle.
Val, I hope radiotherapy sorts you out. How is your dad doing?
June, I hope you don't have to wait for too long to get your results.

doodlecat
Member

Re: Bone mets - please join in

Vercors, that is excellent news. No point in asking if you enjoyed the book if you are purchasing another Ken Follet for holiday.

Val, thinking of you today. I hope rads went well.

I am just back from latest CT scan. Dye leaked into my arm and I now have an uncofortable swollen arm. They say they got enough dye into the vein to give them a good image.

June
vercors
Member

Re: Bone mets - please join in

Big hello to everyone who recently joined us. Sorry to hear that so many of you are struggling. I thought I would post my news to give everyone hope.
I had an MRI last week, and I have been stable for about 15 months. On herceptin, letrozole, Zoladex and ibandronic acid since secondary diagnosis in December 2011, 5 years after primary diagnosis.
Just made a few notes on books to download on my kindle. I finished the Pillar of the Earth, yesterday, I think I will take another Ken Follet on holiday.
Take care everyone.

lucinda
Member

Re: Bone mets - please join in

I have been tied up with hospital appointments and feeling exceptionally tired so have not been on, such a lot seems to have been happening. Mel I actually transferred my treatment to the RM for a second opinion and because I was adamnant that I wanted my growth removed, my lymph nodes had formed into a mass and chemo,rads,hormone therapy had hadly reduced them. Interestingly the surgeon was more willing to operate than the oncs were to the surgery. In the end they said as I was stable the decision was mine to make and i went ahead with surgery. Personally I think it is the best decision I ever made, I felt so much better having that part of the cancer removed from my body. Sadly it did not prevent spread to my liver, but that could have happened anyway and I wanted to do it whilst I was stable.
Sorry so many of you are having problems at the moment and hello to those who have joined us. I need to scroll back and catch up, been feeling really down this week as e/e combo failed (although I have improvement in my spine) and liver mets enlarged so starting capecitabine but need rads to my pelvis first. I also developed a mystery rash on my right breast which spread right up my back. No idea what caused it but antihystermine has reduced it and now just on my right arm. I had hoped to get my dental treatment done before starting cape but just can't fit it in...I was due to have root canal treatment My dentist is so good, he knows my situation and is trying to save as many of my teeth as possible and hopefully preventing the need for exstractions. I had bloods taken today so hopefully ok for denosumab tomorrow and then rads planning Friday. I am absolutely fed up with the site of hospitals. Feel so sorry for my oh who is currently driving me everywhere and spending hours waiting whist I have my treatments. it was our 27th wedding anniversary yesterday so I am taking him out to dinner tonight to say thank you for all his support.
Good luck with your rads Val.

L xx