Really dont know where I'd be right now, without your experiences and reassurances.
Thank you so much
I too have bone mets in my pelvis and had one blast of radiotherapy in Sept 06. In Feb 07 an x ray showed signs of improvement thanks to the bisphonate tablets. My onc monitors me every three months with blood tests and he seems interested in looking at the alkaline phosphate levels. When I was first dx this was 96u/L and it has now come down to 68u/L. Like pinkdove, I keep a copy of my blood test results and I have a spreadsheet on the computer where I can compare the figures. At my last appt I asked about having another bone scan and he said that it was not necessary. I do panick though whenever I get any pain in that area but a couple of painkillers usually do the trick.
Overall I feel well and just try to get on with living each day.
all the best barbara
I have bone mets in my L5 of spine, sternum, rib and now been told its in my right femur.
The main pain I get is with my back shooting pain down leg and numbness but im not being referred to the orthopaedic surgeon to have by spine either pinned or some sort of stuff injected into it as my L5 is collapsing and that’s where my pain is coming from, but generally I don’t take pain killers…for pain anyway!
You are normal to worry about aches and stuff, I still do thin our experience with this crap disease is expect crap until told otherwise and then get them to double check
I have a lot of joint stiffness from my meds that doesn’t help but trying to take yet further tablets to combat that….my poor kidneys are taking a right thumping!
All the best anyway
I've been living with bone mets since 2004 and haven't had another scan (for my bones) since my MRI and CT scan confirming that it had come back. My oncologist said it can be quite difficult to compare and bloods can indicate if things are beginning to go awry. I always ask for a print out of my blood results and look particularly at my Alkaline phosphatase (enzyme found in cells that make bone) although you can do a certain amount of exercise (according to my friend who is a practice nurse) and your levels will rise as it does in athletes but over a period of time you should get a true record.
Like Belinda, my oncologist will only scan if I start having real problems with my spine again.
Hi Lisa, I've been living (well) with bone mets since 2003. My onc would only scan if I had pain, a problem, like Dawn I'm very happy with this. Hope your Mum's treatment is helping..xx
Hi Alison, for some of us hormonal treatment can be even more effective on our bone mets than chemo. Good Luck with the rads..xx
Lisa - i think what your mum's consultant is telling her squares with what mine say. Only now I have chose not to have scans routinely - but if I should ask for them. Your mum will just need to speak up if she finds she starts to get more pain and they will take it from there. I think my onc likes to scan bones every year with me - but I am in no rush 🙂 I am on 3-weekly pamidronate because my bone mets were so extensive - but over the 5 yrs since dx they have improved quite a lot. They will also check her bloods from time to time and they can detect quite a bit from that too.
Hi - really interested to read your comments as have only recently been diagnosed - first rib pain - ' broken rib' then breast cancer diagnosed and 2 bony mets (rib and femur). I no longer have any rib pain. Feel really anxious now every time I have pain in my leg - because it seems to go away in the second week after pamidronate and I feel almost normal (tho had a mastectomy 7 weeks ago so hardly back to 'normal') - these bone drips seem to be amazing and also it seems that these bones can heal ! My femur (leg-hip) met was only picked up on a PET scan - didnt show up on any of the other scans. But good to hear that they can heal - did you do anything special - diet etc ?
I am on arimidex and zoladex - no chemo for the mo. Radiation due to start.
My mum was diagnosed with bone mets 10 months ago and was wondering if anyone can give me any feedback as to if and when she will get another scan to see how things are going. Her consultant has told her that as long as she is well and is in no pain then there is no need to have another scan. She is currently on 4 weekly pamidronate injections. Thanks
Thank you for your comments - I think I am 'normal' (well, it is questionable?!? haha!)
Dx is still relatively new, I suppose - still trying to get my head around things but feel a little more positive of late.
I think the twist would be too much for me as well! Are you dippykate on bcpals?? I'm Sheena on there.
Hopefully see you on Wednesday.
I've got bone mets in hip,pelvis, sternum, T5 vertebrae and a rib. All the pains I get are different but do get a lot of spasm across my chest.
I've been on zometa for just over a year now and my bones in my vertebrae and hip/pelvis are showing signs of healing - definately my leg lengths are more normal now. As others said, it did take about 3-4 IV doses to improve the situation. I've only had one dose of rads to my hip which after the initial pain made it so much better. For some reason, the vineralbine I had for my lung mets also helped the pain as they forgot to give me biphosphonates for the first 6 weeks so I know the chemo helped the bony mets which is unusual.
This time last year, I could walk 100yds with a stick but now can do a decent walk and managed to dance a lot last weekend when we renewed our wedding vows but the twist was too much!!!
I endorse Dawn's comments 100%. I was diagnosed with bone mets (to each vertabrae in my spine) 3 years ago and radiotherapy initially and pamidronate for the past 3 years have really got on top of it.
I can't lie down on a hard surface still as my back tends to go into spasms but, like Dawn, I rarely need to take painkillers these days. I think it's a case of being aware of your body and know what you can and can't do without doing untold damage and this only comes with time.
I was out dancing on Thursday night at a Hindu event (something I thought I'd never do again) and I really enjoyed it but felt tired the next day but it was worth it!! They certainly know how to celebrate - we had one of the dances go on for an hour!
I remember the breast care nurse telling me to take painkillers if I knew I was going out for a longish period rather than take them if pain started and I've found that to be good advice.
Breast Cancer Care have produced a new booklet 'Secondary Breast Cancer' with loads of useful information in it plus comments from us patients as well.
I have had bone mets now for 5 years and yes i click quite a bit! I have been on Pamidronate since that time but did find it took about 3 months for the relief to be reasonably constant. As mine is quite widespread - all areas of my spine, both sides of pelvis and around the sockets, collarbone, ribs and skull I do from time to time become more aware of discomfort and again this was more noticeable towards the end of a 3 week cycle. I do remember the pain around the ribs being much sharper pain and yes like muscle spasm. The pain in the collarbone was intense and at the beginning very difficult to control even with painkillers. But as I got further into treatment several of the damaged areas improved a lot - to the extent that some of them dont show on bone scans now.Certainly if I overdo anything - walking, housework etc. my bones all start to protest. But I very rarely need to take pain killers these days. You sound pretty normal to me 🙂
Hi Anne, I didn't think it was a constant build up though I might be wrong.
I have 'clicks' which I've put down to my anti oestrogen treatments.
Dx with bc at age of 34 - lumpectomy, cmf, rads and 5 years of tamoxifen.
Dx with bone mets in august this year at age of 41 - hip/pelvic region with spot on rib.
Had 5 rads for pain in hip and have had one session of Zoledronic Acid/Zometa IV so far.
I am due for my next iv tomorrow and was wondering, does the last dose wear off when nearing top up iykwim? Or is it a constant build-up? I have been a bit achey for the past few days hence my question.
What sort of aches does everyone else have? I have a lot of dull aches a lot of the time - like when weather is cold and damp. I sometimes have 'angry' pain in my opposite hip to dx - I often wonder is this the cancer spreading?
The pain that I had in my rib was more like a muscle spasm - has anyone else had this?
A lot of my bones click when I stand up - does anyone else experience this?
I am just wondering if I am 'normal'???
I am quite proud (touching wood!), that I only take paracetamol if the niggly aches start wearing me down - I havent had to go for any stronger pain relief.
Sorry if these questions seem silly - but just need a bit of reassurance at times