Hi Everyone,
I have bone mets on my spine. I am on ibandronic acid tablets and faslodex monthly. I have no direct bone pain but since July have intermittent " mechanical "back problems when it is extremely difficult too lie down or turn in bed due to severe muscle spasms. I can’t sleep well because i am so worried about getting the pain. I went to A&E on one occasion as pain so bad and I couldn’t sit or lie down without very bad muscular pain. I was given co codamol 30/500 diazepam and naproxen. There was no sugn of spinal cord compression. Most of the time there is no pain then as last night I turned over in bed and its was terrible . I struggled to get up and it takes my breathe away. My oncologist says it is mechanical back pain. Has anyone else had these muscle spasms with bone mets? Sometimes I wonder if I just would have had a bad back even if I hadn’t had bone mets? The pain is really getting me down because I never know when it’s coming? Got scans this week results next week? Also I am not taking any calcium or vit D supplements. Does anyone else? .Hope this makes sense . I have been awake all night. Got bone scan in morning. Worried about lying flat for that.Thank you for listening xxxx
Sorry I can’t help with your question, but I just wanted to wish you good luck with your scans and results - fingers crossed that they bring some good news.
Have you spoken to your onc about a referral to a pain specialist? I just wonder if that might be a route to explore so that you can get some relief and some rest.
Hope you can get this sorted soon. Pain is so exhausting. Take care.
Hi lovelyday64
My mum who was DX 4 months ago with bone mets had similar pain to yours. She would get muscle spasms from her middle to lower back and down her legs which just crippled her.She was scarred to make certain movements so walked around like a soldier. One evening she could not make it to the toilet because of the pain so we had to call an ambulance to take her to A&E and there she was given co dramol which she took together with ibuprofen which seemed to ease the pain. Since then she had some rads done on her L4 which seems to have eased the pain for her , she can now sit on a chair without any discomfort. I’m sorry you are going through this and I hope they sort your pain out once they have the scan results . Keep taking the pills to ease the pain.
Wishing you all the very best
I had similar pains when I was on Epirubicin and had to take painkillers. I could hardly get out of bed or walk. It was so difficult having scans and I had to ask the staff for help getting up. I couldn’t get in and out of the bath. The oncologist thought it was bone pain and offered me morphine and radiotherapy but I was convinced it was muscular spasm and so declined. Once I came off that chemo, I gradually got back to normal.
I take Adcal-D3, btw.
I hope you can get things sorted soon.
Ann x
Hi Lisa Lauren,I am sorry to hear about your mums pain. It sounds identical to mine as I have bone mets L3 and L4. I also I am so scared of making a certain move the muscle spasms come from no where affecting my lower back and mobility. I will speak to my oncologist. As I was expecting the pain within the bones themselves this has taken me by surprise. I wish you and your mum all the best. Xxx
Hi Ann,
Thank you for your reply. I am sure this is muscular pain as it comes and goes sometimes with months inbetween. I hope you are keeping well. Xxx
Lovelyday - sounds a bit like my situation so here’s where I am at the mo. My spine mets don’t give me pain as such but they have put pressure on the nerves where vertebra has collapsed (not actually compression) and this in turn seems to have an effect on the muscles and tightens them - mostly the large one down the side of my spine. I had it before about 2 yrs ago anx a rads blast sorted it but have had increasing pain again over the last few months. Had various scans and onc and neurosurgeon debating what to do. Am seeing neuro man on Weds so see if thry’ve finally decided. I find sitting and lying worse and moving about gently definitely helps. Not had success with codeine so having paracetsmol and ribbing on voltarol for now. I also have a massage on e a week and the girl is great at getting the muscle released. As you say, it is classed as a mechsnical problem and the neurosurgeon said he can deal with it to some extent but only via surgical means. The onc would udese rads or chemo to try to get rid of cancer cells. Hope this makes sense. Will report back after Weds. Do ask on the bone mets thread too as thetr are a lot of old hands reafing it!
Liz
Hate to hear of any of us in pain - it’s so debilitating and depressing you can’t function. Fortunately for me 2 lots of rads have got me off morphine and I now exist on daily paracetamol * 6 plus slow release ibuprofen which I find helps a lot - more than the old 2 every 6 hours. you can also take a higher dose of this via prescription so worth asking. I must confess I do resort to break thru hydro morphine on occasions when things get bad, and rely on heat pads - I ahve 4 - 2 upstairs 2 down!! If you do have to go to morphine and the first they give you makes you woosey, ask for a different one and ideally a referral to a pain man. I missed out on MST cos they sussed due to another bad reaction that I’d not tolerate it so I started on SR and break thru oxycodone (oxycontin + oxynorm). These at the dose I needed zombified me, but a transfer to hydro morphine same dose level I’m my old self - sorry if I bore repeating his over, I feel as strongly abou this as LG does Cyberknife!!
Nina
I often get tingling/pins and needles in my side, when I reach up to get something out of the cupboard. I have bone mets and am not sure if it is caused by this or whether it is just poor posture. Any ideas?
Ann x
Lovelyday I have exstensive bone mets in my spine,also in my ribs,pelvis hip and femur.I have never been ab le to lie on my side for more than a few minutes since I was dx in 2009.I have to sleep on my back but have now got used to this,my new mattress with the foam top layer has really helped.I also have nerve pain for which I take gabapentin-I try to keep co codemol down to the absolute minimum.I do take adcal,but I was only prescribed this when I switched to iv bispos (zometa) and I also found the pain levels improved when I changed to Zometa.I did have rads to improve pain and may have more early next year.Have you thought of acupuncture,I found it helped with the muscle spasms and am currently planning on another course-think I will get Christmas out of the way first.Hope you manage to find a solution soon.Take care.
L xx
Thank you Ann and Lucinda.
It is improving quite a bit now.i slept in my bed for first time in a week last night ! I am seeing oncologist on Monday for scan results CT, bone and MUGA. Suspect I wil be started on herceptin and oral chemo.already on faslodex. I will discuss how to deal with these muscle spasms. I try to keep diazepam to bear minimum and will ask about gabepentin.
I have been taking oral ibrandronic acid for past four years. It’s really hard fit take painkillers with 6to 7 overnight fast then hour wait post taking them in morning. Can I have iv infusions of it now if I am having herceptin? I am sure i would better control pain.
Incidently I still work full time. Has anyone been able to carry in working whilst on oral chemo and herceptin ? I love my job !
Thank you all so much. You are such wonderful women. Xxxxx
Lovelyday,
i have mets in my spine resulting in a degree of compression .
Like you I take oral ibrandronic acid in th morning, I’m also on morphine for bone pain with oraphorm for break through pain.
I have a hard time sleeping all night du to pian. However my onc has told me I can take a dose of oraphorm or two paracemotol.
Ask your ocn what to do - you may be able to take meds like me.
Take care best wishes Glo
Lovelyday re bisroph iv-zometa-they can give it to you at the same time as herceptin.I know several ladies on here who have it that way.
hope everyone is having a lazy Sunday xx
Hi Everyone,
I saw oncologist yesterday. Bone mets spread to nearly all vertebrae but liver and lungs etc still clear. Starting on xeloda today. portacath in next week then start herceptin and zometa. ( Be so good not to have to get up early to take ibandronic acid after 4 years and can have cup of tea in the night if I want ! )I am pleased to be starting treatment. She felt muscle spasms not related to bone mets as such but pulled muscle after which my back muscles stay tight. medication sorted for this.
Thank you to you lovely ladies. I have read your experiences and they are so helpful and inspiring. Xxxxx
Lovelyday - Good luck with your treatment. Fingers crossed that it works for you.
Ann x
Thank you Ann. All good so far well chemol not as bad as when I had iv chemo 10 years ago ! Muscle spasms really easing. Can lay flat and move. Was given omprezole to protect stomach … Only taking that and naproxen now for pain seems to be controlling things. I hope all is good with you Ann. Xxx
Thank you, Lovelyday.
Glowormdancer - You said that you have pain due to compression in the spine. Do you get tingling as well? I am getting this but am not sure if it is due to bad posture.
Ann x