I was diagnosed with a secondary in my 2nd vertebrae in Sept last year. First chemo had no effect the second Carboplatin made an almost instant difference to the extreme pain I was having which was brilliant. Since finishing the course the pain has returned with avengence over the last two weeks. Had a scan last week and seeing onc on Friday - very worried.
GP has increased my painkillers but they are not touching the spot and pain seems to get worse daily. Will I just have to live with this pain or is there anything further they might do - apart from chemo? I had rads when it was first found but they did not stop the pain and am on biosulphate infusion 4 weekly. Any advise or someone with the same experience. Pain is getting so bad I just don’t want to get out of bed in the morning.
You say 2nd vertebrae - but which part of the spine is it? I have extensive bone disease which also affects all areas of my spine - diagnosed in 2002. Initially the pain did improve with bisphosphonates (pamidronate & now zometa) - which one are you on? Over the years I have had a few areas treated with rads - some has worked and some hasn’t. I am not on chemo - but herceptin and that seems to have helped for some time as well. The past 2 years I have struggled though with increasing pain and am on quite strong pain meds including oxycontin, pregablin, and fentanyl lozenges for breakthru pain. Each time I was scanned the reports from bone & mri scans came back as no change. But just recently there was a gap of almost a year on mri and it seems my problem is because I have a tumour growing alongside my lower spine which has shown up on the mri. What scan did you have last week? If it was just a bone scan I would ask for an MRI as well because they show up different things. It does sound like for now you need to get the pain meds right. If your hospital does not have its own pain clinic perhaps you could ask to be referred to macmillan for some help with pain control. They would be more experienced than your GP I think.
Thanks for your reply the pain is in my neck I think they said 2nd vertebrae down but will double check tomorrow. I had been taking dihydrocodeine and diazepam which did the trick for a while, as I said on last chemo it was great and completely under control. GP prescribed Tramadol last week but it is making little difference. I am triple neg so no hormone treatment but been having zometa infusions for last 7 months. I had a CT scan last week but thanks for your advise will ask for another MRI, one last year was clear just showed up the sec on my neck confirmed by CT scan. Thanks for the advice about referral to pain clinic, I think there is a link to hospice pain doctor. As you say I think I need to get that sorted out first because difficult to think straight or do anything when in constant pain. Sorry to hear you are having more problems. Do your meds keep the pain at bay?
Thanks Anne xx
Vicky has had 2 spinal surgeries to replace a vertebrae lower down her spine but from the sounds of it you may benefit from verteplasty (essentially bone cement) which should firm up the bone and relieve any pressure on the spinal chord. Vicky’s hoping to have this procedure carried out on her pelvis in the next month or so and has had good reports from people who have had the same done.
I would also advise talking to hospice palliative care team or your macmillan nurse as they should be able to help with getting the right levels of pain meds for you.
That’s very interesting I did not know about that as a possibility. Good luck for Vicky’s procedure next month and great to know other people have benefited from it. You have given me hope and something to ask onc about.
Thank you x
Hi again Anne. In a way it is good that your last MRI was some time ago because if there has been change over the year they will be able to compare the two and see what changes. I too have a problem with the top of my spine - can’t remember which one but it is the one that has an odontoid peg (think that is the term) and enables the head to swivel from side to side and that is a bit unstable! I had rads to that about 8 years ago now and it was one of the bits of rads that really did help. But I do sympathise because the pain from spine bone mets is dreadful. Under macmillan, or pain clinic, they will try out different ones to see what works best for you. I found I couldnt get on with oromorph (MST) but tolerated oxycontin better (they are both morphine type meds). Pregabalin or amitriptyline for nerve pain can be good. For someone who used to hate the thought of even taking aspirin!!! I am willing to give anything a go. Once you have pain at the level that cancer induces you really do need to be on top if to function otherwise life is just miserable. They all seem to make you very sleepy at first but I found my body adjusted to the side effects in time. So much will depend on what they find with the scans - if discs are disintegrating then surgery seems to be the way to go. For me the problem is to reduce the tumour that is growing beside the spine and trapping the nerves that exit at that point. Lets hope we both get relief soon eh. Will be looking out for how you get on.
You are always an inspiration and have given me hope during my journey since I joined the forum. It’s good to know that the side effects of the pain killers reduce as your body gets used to them as, like you, I would hardly take an asprin before all this and hate the knocked out feeling the pain killers give you!!! Mind you at the moment like you I would take anything just to get some relief.
I think my sec must be in the same place as your one at top of spine as I have difficulty moving head from side to side. Funny how rads sometimes help and sometimes don’t. It made no difference to me whatsoever apart from making me very sick - yuck!
What do they plan to do with the tumour by your spine - the trapped nerves sound so painful? I do hope you get some relief soon. Will let you know what they say on Friday and ask for referral to pain specialist. Feels better at least having a plan now as totally agree that you just cannot do anything feeling like this.
Thanks Anne xx