I am at home having a day of rest after 3rd zometa drip yesterday. I have been reading various internet sites and have given up because most of them are just too general or too depresssing. I constantly see it written that cancerous bones dont heal. But have seen threads which talk about healing in the bones and am a bit confused.
I have had one radiotherapy treatment intended to strengthen my bones am having zometa drip and taking calcium tablets. My main problem is in my left hip although nearly 2 months after developing a limp, said limp has almost gone. There is still a weakness there as I cant stand on one leg. I know because I have to sit down to put my knickers on in the morning. The other thing I have noticed is when I wake up my joints click, especially my shoulders, wrists and upper body is this just me or does anyody else have clicking bones?
The consultant said that the radiotherapy I had would kill off the cancer cells if that is so what are they replaced with if bones dont heal?
I will be having CT scan at end of September to check spread and whether primary tumour has shrunk. Will I be on this zometa drip forever or does it have some permanent effects which mean you stop it at some point?
Hi Julie…yes bones do heal, not sure if lost bone is replaced but I have been told I have bones that are now showing no sign of cancer, my Onc describes them as healing bones…I’ve seen the results myself and my Onc has also told me bones that are healing can be painful. I used to find that hard to believe but the only time I’ve experienced twinges are when my tumour markers have taken a dive and there’s no active cancer. The twinges are my bones healing. The pain, very mild, is different to the pain I had from active bone mets before my diagnosis. My bones also used to click, in the same places, just after diagnosis but they don’t now…perhaps it’s years of bishosphonates? My understanding is we are on bisphosphonates for life but I may be wrong. (Good news about the disappearing limp!) And Good Luck with the scan. xx
Whilst you wait for the other users to reply with their experiences and advice it might help to have a look at the BCC fact sheet on Secondary BC in the bones as it is may answer some of your questions.
If you would like a copy just follow this link:-
Also please don’t hesitate to contact the helpline and talk things through with one of our trained members of staff. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9am to 5pm and Saturday 9am to 2pm.
Hi Jules
It was explained to me that bones aren’t dead material they are replaced constantly and BC interferes with this process so more bone is lost than replaced. Bisphosphonates help strengthen the bones and stop the BC attacking them. My boney bits have shown signs of healing since having chemo last year and being on bisphos. I occasionally get aches, like Belinda, and hope that this is a good process rather than a bad one I don’t tend to click as my weaker bones where the BC is are not on joints, the only creaking is due to lack of oestrogen I should think (on my part anyway). Good luck with your treatment and scans.
Nicky x
Hi Julie
I don’t have secondaries(as far as I know) so I hope you don’t mind me replying.
You asked about clicking bones, well, my shoulder bones on BC/MX side clicks like anything, and I am still having physio. I asked the physio if clicking was a problem, to which he said no, its nothing to worry about.
Hope that this reassures you a bit and also hope your treatment is going well.
Hi all thanks for all your replies they are reassuring. Have been talking to my BCN and she says the clicking is probably due to the zometa and femara combination as one of the side effects is joint pain and stiffness. I am lucky in that I am only taking diclofenac and paracetomol and this combination means I dont have pain apart from my leg pulling a bit on occassion.
I just wanted to ask though when you get to the stage that you have no active cancer do you not need to take painkillers at that stage?
Hi…I’ve never had to take any ‘proper’ pain killers…I had pains before diagnosis but it’s thought I’d been walking around with a fractured hip which then fractured further…that was really painful…big scene too as I was rooted to the spot outside a local school, didn’t fall over but couldn’t move at all…ambulance…and a small crowd of the general public…and was diagnosed with bc and bone mets about 3 days later. I had a (very succesful) hip replacement and since then (Jan 2004) I’ve never taken any pain killers, never needed too. If I get the healing twinges I very occasionally take an Ibuprofen.
After nearly 6 years of bisphosphonates I fell down hard on snowy pavements this year and was fine, no fractures, no pain. I hope this feedback helps, after my initial fracture I’m so pleased I feel this well and I think the bisphosphonates have played a big part in this…xx
Thanks for your reply. Your story is amazing to me. Its incredible to think you could be walking around with a broken hip. It must have een terrifying at the time and very upsetting for your children. On the week I was diagnosed with BC I just started to limp with real pain in my hip but apparently my hip is sound it is the pubic bones that support the hip that have crumbled. I am glad that you have had such a good response to treatment I oviously am hoping for the same. Am a bit nervous about next Wed but keeping my fingers crossed for good news. I can walk now without the help of a stick but I do worry sometimes about how I would be without painkillers. Its like the devil and the deep blue sea. I dont want to take all these pills but would be a mess without them. I know I am just starting out on a long round of treatment and I know I am just being impatient but it would be nice to think I might get some time where I feel well again.
Anyway I am lucky because I know we are the same age now, so you must have been quite young when all your problems started. I can remember celebrating my 50th little did I realise only 4 months later I would be here. you never know what life is going to throw at you.
Hope you don’t mind me joining this thread. I’ve got bone mets too, diagnosed in summer 2008. I’ve been on pamidronate since then (bisphosphonate drip), and like Belinda have had a hip replacement. I get quite a bit of pain, and have been on painkillers for months and months (since the hip op it’s been back rather than hip that has hurt the most). I recently had some more radiotherapy to my spine, and that has lessened the pain although it hasn’t gone completely, there’s a residual ache which I’m a bit disappointed about. I’ve been able to reduce the dosage of codeine I was on, though, and just take something stronger at night so I sleep properly. I hate the thought of being on painkillers for the rest of my life.
Julie - good luck with your CT scan next week. I had scans recently and thankfully things are stable at the moment, so I can continue with the herceptin. Am crossing fingers for you.
Hi Alison…just wondered if you had lots of physio input after your op? They had me up walking the next day…albeit on crutches…and I was walking down corridors and up and down the stairs at the hospital. I was alarmed my operated leg was much longer…could only stand with it bent at the knee at first (were you the same?) I was assured my new hip would quickly bed in and it did and now have 2 legs, same length. After approx 4 weeks I was stopped from using crutches.
I’m on the hospital orthopaedic ‘books’ and have a yearly check up, consultation and x-rays…on the books so in case of a problem I will be given prompt treatment. I’m told this replacement will, should, last 10 years and I could then be given a new hip after this…whether I shall still be here…doubt it but ever hopeful.
I was wondering if your new hip hasn’t bed in completely and if this could be causing the back problems???
Sorry Julie…don’t want to take over your thread!! xx
Hi Julie, Alison and everyone else on this thread. Just to say I have had secondary bc for 10years now and am doing well. I have been on Biphosphonates for 10years, including Pamidronate, Zolidronate and Bondronate ( tablet form). I am also on numerous painkillers including morphine and am on Chemo just now Cappacitabine. When I have had bone scans done over this period of time I have been shown areas of bone on the scan that have repaired and improved, while areas that have been okay before are now affected. I have bone cancer in my spine,ribs, thorax and pelvis. I have had radiotherapy on a few occasions when the pain has become worse, mainly in my ribs and the base of my spine. I know it is not ideal having to have all this treatment but I am just happy to be here still and am happy to take anything that keeps me here a bit longer. It is 20 years since I first had Breast Cancer and it has been a struggle at times. Hope your bones continue to heal girls. Have a nice weekend, love Val (Scottishlass)
It took me about three days to get up after the op (I guess a certain intolerance to morphine and/or anaesthetic) but, yes, they did make sure I could walk on crutches and up and down stairs before they let me go. But I was really surprised that I wasn’t given any specific physio exercises to do once I left hospital, and felt like a little boat cast adrift on a big, choppy sea! Anyway, all ok now. Like you I was convinced that the operated leg was longer than the other one, but mine also now seems to have bedded down ok. My continuing pain may, I think, be due to nerve damage or compression in the cancerous areas in spine, as I have numbness down my operated leg and restricted movement and searing pain if I try to move the leg in certain ways. So, I still can’t put my sock on, cut my toenails, sitting cross legged is a thing of the past, even sitting on the floor is awkward at best. I’m only 43! Feel old before my time. We’re hoping to go on a beach holiday sometime soon, but the thought of getting up and down on the sand really doesn’t appeal, as it’s essentially a sit-on-the-ground type holiday (unless I can bag a sun lounger). Ho hum. Still, sooo grateful for all treatments and surgery and really, there was no option not to replace the hip as it had fractured. Just can’t help feeling grumpy about it sometimes.
Val - I’ve seen some of your posts and it’s great you’ve been living with it for so long (meant in the nicest way, or course). It’s a source of hope for me that some ladies keep going with this d*mn disease.
Thanks for all your contributions and stories I find them really helpful.
Just thought I would let you know I have had some good news from scan. The bones in my hip are showing signs of healing just like Belinda and Alison talk about. My walking continues to improve and I am hoping to ditch my walking stick very soon. When I was first diagnosed I asked to be referred to a physio as I have always found them helpful with any kind of joint problems. My Onc said no but hasnt ruled it out for the future. But I am told I can go swimming so thats progress.
Best news of all for me there is no sign of any spread to any of my organs which I was absolutely petrified about. And its not clear whether hotspots on my spine are just down to normal wear and tear.
So I am very happy today. Am continuing with zometa and femara and putting up with clicking and achy joints it is worth it. I hope Val to have as good a response as you have had. You will be my inspiration.
That’s great news. I have also recently been diagnosed with a secondary at the top of my spine. I had radiotherapy and am now having Zolidronate every 3 weeks and Cappacitabine.
I have a rake of scans coming up again so fingers crossed there is some improvement. You guys really are an inspiration and help in the dark days.
Dear Julie, I am so pleased that you have had good news. Yes your bones do heal with these new treatments and it fairly boots morale when you get news like this. Before I was diagnosed with bone mets I was having physiotherapy and to be honest I think it made my condition worse. Since diagnosis I too have been advised NOT to have physio as it could make things worse instead of better. Swimming is a much better answer as it will keep you healthy and strengthen your muscles without harming your bones. Can I sincerely thank all who have said my posts have helped or inspired. It has given me a wee boost hearing this. I wish forums such as this had been around when I was diagnosed as there was nothing like this and I know it would have helped me to know there were others around with similar stories. It can be very solitary place to be at times. But it is good to share the good times as well as the bad ones. I love reading your posts girls. So keep them coming. I am taking my last lot of cappacitabine tablets tonight and will now have a week off them. ThenI go back on Thursday to go through it all ove again. Sound familiar ladies? I am still off my Zolidronate and waiting for my Oncologist to give me the okay to re-start it. When I was off all my treatments recently because of the dental treatment I was having I felt very vunerable as I had also stopped arimedex. I didn’t feel good with the thought of having nothing to keep the cancer at bay. Fancy wanting to be back ON treatment…love to all, Val XX
Hello all thanks for your good wishes I am a great believer in the power of positive thinking.
Val - I am with you entirely 3 months ago I was in a state of extreme anxiety I can honestly say one of the things that pulled me back was reading about people’s real experiences here and making contact with people going through or having been through what I was going through.
I am going to try swimming and see if that helps any with the aches and pains. I find my joints are worse at night it seems as though lying still aggravates them. unless its just I dont notice so much in the day.
Glad you came through your dental treatment ok in the end. I would feel very vulnerable too. I feel like the tablets and the injections and everything else are like my lifeline and I will cope with the hot flushes and the aches and pains best I can.
Anne - good luck with your scans I will have my fingers crossed for you. let us know how it goes. I had radiotherapy too it took longer to work on my spine but immediate effect on my hip.
I don’t tend to click as my weaker bones where the BC is are not on joints, the only creaking is due to lack of oestrogen I should think (on my part anyway). Good luck with your treatment and scans.