I am recently diagnosed with bone mets (pelvis/spine) and have had my first IV bisphos and am due my second one next week. I had radiotherapy two weeks ago and whilst I was told that the pain was likely to get worse before it got better I am in so much pain. I have a hearty supply of pain killers, plus anti sickness tabs & laxatives to counter the side effects.
I seem to be ok if I stay home and rest but the minute I try and do something or go out I am in so much pain it is depressing. I was queueing in the bank yesterday and felt like shouting “Woman with bone tumours! Let me through!” Of course, I didn’t… but you get the picture.
I cannot workout if the pain is making me feel sick or if the painkillers I am taking are making me feel sick but either way I had to go bed when i got home I felt so ill.
I know it is early days yet and I am wondering what other people’s experience of pain relief with bone mets has been? Do I just need to be a bit more patient with the process (not a very patient patient)?
I’m sorry you’re in so much pain. The only painful met I had is in a rib, but I can imagine it would be more painful in your spine or pelvis because of the strain on your bones when walking around. If it’s any consolation most people find bisphosphonates work very well and you should feel the benefits soon.
It could be the painkillers that make you feel sick, lots of them have some kind of side effect on your stomach. I can’t take neurofen or aspirin for that reason. The culprits are NSAIDs (non-steroidal anti inflammatory) so if you’re having one of them ask your doctor if you can have something to help with the side effects of the painkillers. I have omeprazole which helps a lot with my stomach problems. Opiate painkillers cause nausea too. It seems so unfair that the drugs we take to help us feel better might make us feel worse! Do ask your GP or oncologist about different pain relief - you might be better off with something slightly different. For instance if tablets upset your stomach, you might be happier with pain relief skin patches.
I can totally relate to what you’re saying as I was diagnosed with spine mets in 2004 with a fracture in T8. The pain was indescribable - I didn’t know the best way to get out of a chair, bed, walk, stand (couldn’t stand for too long).
The good news though is that I had radiotherapy and within a matter of weeks (can’t remember how many now) the pain was lessened and I think having the bisphosphonates really make a difference. I was dancing a couple of months ago and stayed dancing for over an hour, something that I really couldn’t have contemplated even 2 years ago.
It does take time and I used to have to take my painkillers before going out, not when the pain started to get a hold. I couldn’t walk more than 50 yds before having to stop and I was so slow!! But it’s so different now and if you’d have told me 3 years ago that I would be able to walk okay and stand for longer I wouldn’t have believed it.
I just take cuprofen now and only when I know I’m going out for a longish time as I still get a slight ache but hang on in there - it will get better! Your painkillers might be a bit too strong or not the right type for you - I can’t remember which ones I took in the early days but I felt so spaced out with them that I stopped taking them.
I have a lot of bone mets - throughout spine and pelvis plus a few other places! and have had them for over 5 years now. I seem to remember it took at least 3 treatments of bisphosphonates before I started to feel any relief plus some rads to the worst areas. I do find after all this time that I do need to be careful what I do otherwise I pay for it! i.e. can’t do hoovering LOL, anything too repetitive or too strenuous. Also find it is not good to be walking or standing for too long. As silverlady says it could also be your painkillers causing some problems. I found after the initial 3 months from dx I very rarely needed painkillers again. I think with bone mets we all experience the degree of pain quite differently.
Agree with you as well that there are certain things I can’t do and I tend to gloss over them but reading your post made me realise that I still can’t do them either! Lifting anything that’s remotely heavy is a no no as well plus the walking and standing although it has improved from what it was 3 years ago.
I’ve sent you a p.m. on other site as I want to pick your brains!
Thanks everyone. It really is inspiring to hear that you have all progressed from a painful time and I feel that I need to get over these initial months together with the shock of diagnosis.
Good luck Angee! It’s always good to know that there are people out there who have something similar and what they’ve been through and how they are getting on - thank goodness we have sites such as these!
Was diagnosed with bone mets to spine and ribs last Thursday, so have found great comfort in your messages for Angee. They havent suggested radiotherapy - not sure why. But I am a whole lot better since starting the pain killers. Will start bisphospahtes next week and herceptin.
In supermarkets I say yes to my bags packing ! And am starting to barge old people out of the way to get a seat in the cafe. I dont want to have to tell people, but feel like shouting it out loud when I see another queue I have to stand in. Especially the lasies loo when the disabled and mens is free.
Jane I’m sorry to hear you were diagnosed last Thursday. I was diagnosed with breast cancer and bone mets together in 2003 when my hip spontaneously fractured…4 years on and I’m doing well…bisphosphonates have strengthened my bones and I’m completely pain free and I have a new hip which works very well, no walking aids needed…only mentioning my story to show life somehow goes on and there are treatments that can really help…take care…Belinda…xx
Thanks again for your lovely and encouraging replies. Jane, sorry you had to join this club. I hope your first treatment goes well. I am having my second this afternoon and seem to have more dread than i did for any of my chemos but maybe i have rose coloured specs on and am forgetting how awful it was…
Re: disabled loo - use it! I walked into the mens loo in a restaurant last night. I think it was an automatic thing as they were nearer than the ladies and must admit I was tempted to use them rather than stagger further to the ladies but I didn’t like the decor!
Just to wish you good luck with this afternoon’s treatment. I wondered if the pain was improving yet. I know when I started on bisphosphonates it wasn’t until the third treatment that it got better - so much so I was able to come off all the painkillers which was such a relief. Hope to chat to you soon
