Hi Everyone,
I wanted to ask those of you who have bone mets if you suffer severe pain.
The reason for this question is because I also have osteoporosis with two crushed vertebra at the same site as a tumor in my spine and I don’t know which of the two problems is causing the pain. I have other spots of cancer mets in other parts of my spine but I get no pain at all from them but I thought bone mets were sore. You can tell I’m confused.
Love Ali
Hi Ali, I have bone mets to my spine and I have not suffered any pain at all from them. I did develop spread to my femur around Christmas that did cause me a bit of pain, but that is now under control with bisphosphonates.
Deirdre
Hi Deirdre,
Thanks for your reply. I have been given iv injections of Zometa which helps the pain control greatly but I thought that was for my crushed bones and the osteoperosis but from what you say bisphosphonates are for the cancer. I remain confused.
It’s good that you have the pain controlled after the spread as there is nothing worse than continuous pain.
Perhaps my pain is coming from my vertebra and the Zometa helps that too.
Does anyone else have experience of both spinal mets and crushed vertebra?
Hi Ali
I have bone mets in all my vertebra and suffered a fracture when I was first diagnosed with it and I did get severe pain as I could hardly walk, didn’t know how best to get out of bed, chair, etc.
I do think it depends at what stage they pick the mets up, mine had started in the January 2004 and it wasn’t until the September that they decided there was something more to it than just ‘normal’ back pain!
The Zometa (which I’m also on) is for your cancer although I seem to have read somewhere that people who have osteoporosis are also given bisphosphonates, may be not necessarily the same ones as for cancer but it’s about the bone density (or lack of it!).
Have they given you an MRI scan to establish where the pain might be coming from?
Pinkdove
I have posted this on behalf of Terry
Kind regards
Lucy
MY wife has both. She is on morphine patches ( 100mg) and is kept virtually pain free.
Take care
Terry
Zoledronic acid (which we know as Zometa for bc) has recently been licenced in the UK for postmenopausal women with osteoporosis as a yearly IV infusion (5 mg for 15 minutes). The trade name Aclasta is used. (Info from NOS Osteoporosis News Winter 2007). I was on Zometa for 6 months for my bone mets. Had also been dx with osteoporosis in 2001, but no longer in that range probably thanks to 5 years of oral alendronate.
Hi Coperbeach,
I have mets in my spine and have had unbearably horrendous pain from my lumbar mets which was not alleviated by radiotherapy as my pelvis mets were. I had further x-rays and MRI which showed that a lumbar vertebra had collapsed. I then had vertebroplasty (where they inject cement like substance into the vertebra to strengthen/reinforce it). Some of the pain is reduced but I am still in a lot of pain if I do anything other than take things easy. I was told that the next vertebra up was ‘ropey’ so am having further verteboplasty in a couple of weeks.
I have been on cocodamol, voltarol, oramorph, oxynorm and am now on fentanyl patches plus top of of painkillers. I am about to have my fentanyl patch increased to tide me over to my vertebroplasty. I also have zometa every 4 weeks which is for my bone mets but I too have read that it is used in the treatment of osteoporosis. I am also on zoladex and letrozole.
I think that once the bone is broken or with a vertebra collapsed/crushed then you are looking at heavy duty pain relief to be honest. I think some people have effective pain relief and live a reasonably pain free life but perhaps do not have added complications of collapsed vertebrae. I have to say that prior to my vertebroplasty, the pain was unbearable beyond belief and I couldn’t sit, stand, lie down comfortably.
I don’t know if this helps…?
Take care,
Angee x
It is interesting to hear that most of you have none or very little pain from your bone mets. I am about to have a bone scan as I have had a lot of joint pain since on Arimidex, but also some tenderness in rib cage. Onc said she would give me a bone scan to rule out bone mets, but if they don’t cause pain is she just thinking about the rib tenderness?
Irene
i am on arimidex and have been having pain in my shoulder esp. if i try to reach something from behind, worried about bone mets but onc seems to be unconcerned about it. i had scan of neck and just showed wear and tear. i am only 48! now my wrist seems to be a bit dodgy if i turn it a certain way. does this sound like bone mets or is that more of a general ache?
thanks for any advice.
Hi Northerngirl,
Lovely to see you here again.
When I have mentioned any boney issues the oncs are generally unconcerned (as liver mets are far more critical) and get told ‘wear and tear’ too. I’ve recently been to the docs over bad (undiagnosed) knee issues and guess this also comes under general ache category. I believe that bone mets generally present in the ‘long bones’ and back first and are unlikely to show initially in your wrists and similar. (Correct me if I am wrong, experts.)
Without intending to scaremonger, I think liver mets can cause shoulder pain due to pressure on certain nerves, I hope this is not the case for you.
Jenny x (also a young 48!)
Hi everyone,
I’ts good to hear from all of you and to learn that I’m not the only on with bone mets and collapsed vertebrae. (Well that’s not really the sentiment as I wish none of us was in this position but you understand what I mean!) Angee I know how horendous that pain is. It took my team months to discover that I had a tumour at the same site as the collapsed vertebra. I couldn’t sit up or lie down or find any position that was not painful. It was a doctor who had nothing to do with cancer patients who diagnosed the tumour then told my ‘experts’ so Jenny, northerngirl and Irene this was the same reaction I was getting from my breast care doctor at my follow up sessions i.e. that the bones are sore but it has nothing to do with the cancer. How wrong they were.
I was at my pain control clinic on Thursday and asked about the Zometa. It is given to me for my cancer and is also used in patients who have osteoporosis so it will be helping the bones too. Puzzle solved.
Angee, My oncologist has been thinking about vertebroplasty for me. Several surgeons have said it would be unsuitable. I am fearful that the fluid would leak through and fix on my spinal column causing me more problems than I have already. My onc still thinks it might be the way to go.
On a daily basis I am taking MST (morphine) Gabapentin Ibuproven (because I can’t tollerate Diclophenac) paracetomol and Severadol for breakthrough pain. A fair coctail of drugs which if I’m late taking results in high pian levels. I wake up with back pain and I am lucky if I have a pain free period at any time of the day.
I have lost a lot because of this horrible disease. A lot of things I used to love and can’t do now. Even reading a book is dificult as I’m dropping off to sleep after a couple of paragraphs because of the meds.
How is everyone else coping with all this?
Love Ali
Hi Ali
When I was first diagnosed with spine mets I too couldn’t find a comfortable way of sitting, walking or sleeping. My back used to go into spasms (in fact it still does at times) which was excruciating pain.
What I was going to ask you is have you had radiotherapy? I had a fracture in my thoracic region initially which I think was giving me the severe pain but the radiotherapy did wonders for me but I also acknowledge that we are all different even if we have the same basic diagnosis in that we all have different degrees (the same as my liver which isn’t that good although has improved hugely since being on Xeloda).
Pinkdove
Hi coperbeach,
My collapse was near the back of the vertebra next to the spinal fluid and I was told that there was a risk of leakage. I was told that I was an unusual case… oh joy… but they were willing to give it a go if i was. I was terrified that the cement would leak into my spinal fluid and was told that an orthapaedic surgeon would be on standby to take the cement out before it hardened if this happened. It was all very scarey and I worried about being in a wheelchair, etc… you know how the mind wanders… I had the vertebroplasty done in February and they did as much as they could as some started to leak out into the spinal fluid. I have reduced pain but still some pain higher up and am having further vertebroplasty in April on the next vertebra up.
I would recommend you give it a go as my view for me was that i could not go on living with this pain for the rest of my life. I also feel reassured that they no more want anything to go wrong than we do and knowing that the radiologist man stopped before too much leaked into my spinal fluid has reassured me hugely and I feel calmer about my next vertebroplasty.
Hope that helps?
xxx
Hi Pinkdove,
Yes I had radiotherapy to the area. 5 zaps in all which means I can have no more. My onc is convinced that the tumour has been halted because of that treatment.
Hi Angee,
I can’t believe I’ve found someone with very similar problems as me. My onc has been suggesting vertebroplasty. My crushed vertebrae are T4 and T5 at bra fastener level. Some orthopeadic surgeons I have seen have ruled this out in my case. My onc says he would not ask a builder about plumbing! He want’s to ask the person who would do the job. I think he is sending a letter of refferral to someone he knows so I might have to give consent to this proceedure if they want to offer it to me.
I too think it’s very scary and think about ending up in a wheelchair. I didn’t know there would be an orthopeadic surgeon standing by. I thought it would be trial and possibly error!!! You have certainly given me something to think about. I’m so glad things went well for you and that you are reassured about your next one in April.
You say you still have pain . Do you think it is because of the vertebra still to be treated? How much of a difference to the pain level did the vertebroplasty make?
I hope we can stay in touch because I’ve been very emotional about my situation recently. I can’t understand it because I sailed through the treatment for the primary diagnosis but the secondary has floored me. Sorry to go on a bit but your posts have helped me a lot. Thanks Angee
Love Ali
Hi Ali,
I am the same, I feel I coped better with my primary treatment but seem to be in a permanent state re: secondary diagnosis. I have cried more than I thought possible and after I went to see the consultant radiologist about my vertebroplasty I felt so depressed. I felt I had one week left to walk and felt so miserable that I couldn’t go for a walk because my back hurt SO much. I just cried and cried and cried. It is hard to expalin to other people who are not in this situation but from what you say, I think you will understand where I am coming from.
On the morning of the procedure I took one painkiller, was in so much pain I could have killed someone (not literally of course…) and when I came round from the vertebroplasty I felt that although still in pain I was in less pain than I was when I walked into the hospital. It was done on L2 and the next one is on L3 as I still have pain but it’s a little bit higher. I am willing to give it a go if it relieves more pain. I also have thoracic (sp?) mets and am having problems with pain in that area so if vertebroplasty is pffered for that I will have it.
I think this is perhaps a relatively new procedure and may be that it evolves all the time. I was given a questionairre to fill in about pain levels after the procedure (still haven’t done it) so perhaps they are learning all the time. I haven’t let this put me off and feel that if it can help me I will give it a go.
Of course keep in touch with me. I posted an ‘Anyone had vertebroplasty?’ on this site a couple of months back and no one had so it is good to know I am not alone (although of course it would be lovely if neither of us were in the position to have to have this done…). I must admit, I felt quite isolated and alone and felt that it was a huge leap of faith but I am glad that I took it. I walked at snails pace but feel I am walking with a bit more ease now although still nowhere near as fast as I have raced through life previously!
Anyway, I will stop waffling!! You will be referred to a consultant radiologist and use this opportunity to ask him/her any questions you have. What area are you in as I think the one who did mine has kind of cornered the market in the South East!
Take care xxx
Hi Everyone
I dont have secondaries (as far as I know) . I was wondering if you get scanned automatically after you have finished your initial treatments ( chemo, rads etc) or do you have to wait for any other symptoms to appear.
My Rads finished 5 wks ago and see Onc on 2 Apr.
Love and gentle hugs to you all.
Andrea x
Hi Andrea
I was first diagnosed in 1995 and my mets were diagnosed in 2004 and no, I didn’t have scans automatically. I think you may find that most hospitals are reluctant to do them (plus the anxiety it causes) unless you present with symptoms.
I wish I had been made aware of the signs and symptoms of it as I wouldn’t have delayed as long as I did. The breast care nurses in our area are still reluctant to tell primary ladies about it so I’ve gone down a different route and targeted the GPs!
Pinkdove
Angee,
I’m in Scotland.
When you posted a couple of months ago I wouldn’t have read it as I was having a rest from the site. Don’t you feel sometimes you just want to forget you have cancer! I was only diagnosed with secondaries in November and was feeling very down and staying away from cancer related stuff.
Having the vertebroplastywas a huge leap of faith and a very brave one to take. I admire you greatly and I don’t know if I have enough faith.
Hope you have had a painfree day
Love Ali
Bumping up for Allicat.
Kay