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Bone mets

13 REPLIES 13
bc-lass
Member

Re: Bone mets

Thanks Ladies for all your answers. 

belinda
Member

Re: Bone mets

I've been on Ibandronate for years and at the moment I don't have any bone pain.
We need some Clooney clones ladies. 🙂
carolsav
Member

Re: Bone mets

Hi. I am on denosumab injections ...only had 2 and they have made a massive difference to my bone pain. I am at james cook hosp in middlesbrough and had no idea it wasnt funded as a matter if course.
Carol x
2catlady
Member

Re: Bone mets

Hi,no it's only to shrink it a bit to stop pain. You usually only get one or two blasts. I had only one blast last year. It does kill cancer cells but because we have secondary's they don't us it to kill all of tumour ,why I don't know?!
bc-lass
Member

Re: Bone mets

What do rads actually do to bone mets? Onc said it would only take pain away but does it not kill the cancer too??
2catlady
Member

Re: Bone mets

Hi,janette,glad your mind has been put at rest even a little bit xxxx

Hi,Nicky and "other "Helen ,oh the Denosumab sounds good. Apparently the freeman only prescribe that now for bone mets,so glad I'm there now and not a Fawlty towers.
Guess what,while I was having rads I saw onc at freeman and told him I never wanted to set foot in that hospital again. So he rang to tell them.When I returned from coffee with a friend my old evil BCN had rang house to see how I was doing!!!! Haaaa haaaa she's never rang before to see how I was!!
Thank god I never have to see that woman again.
Hope everyone is okay. I'm off to bed as shattered ( without GC as it's chocolates turn tonight with him lol)
Huge hugs,Helen xxxxxx
rosie53
Member

Re: Bone mets

Hi ladies, my bcn rang again today to say she has spoke to my onc and she isnt to concered but has said if g want to see her nxt wk for a chat thats fine, she said you can get episodes of pain now and then but she did ask me to go and get my bloods done...tumour marker etc, must admit i do feel better for speaking to her about it!! The only trouble is i get my results on the day i go on holiday..yikes!
bc-lass im on denosumab injections, i was given ibandronic to take daily but only took them for 2 days because i could not be mithered with the not being able to eat, drink or taking tablets for an hour before and after taking it!!
Hope everyone is doing ok love Janette x x
bc-lass
Member

Re: Bone mets

Thanks ladies. My insurance company has declined Denosumab (we are going to try again). My bone scan was stable but I have a sore shoulder and the x-ray shows there is a met there. If insurance company decline again they will try my GP. I don't really have an issue with the ibandronic acid but it there is something better out there I am willing to give a try.

nicky08
Community Champion

Re: Bone mets

Hi
When I was dx with bone mets 6 years ago I was put on Pamidronate, an IV bone strengthener, as our local authority didn't prescribe zometa. I was on this for a few months and then switched to Bondronat, a tablet form of bone strengthener as I was fed up with the hospital visits and hunt-the-vein! This held my bone mets stable until 2012 when I started getting a pain in my hip and right femur, more like a muscular pain than bone pain. However a CT scan showed my bone mets had progressed and at the time I took over the counter painkillers to help but didn't need anything stronger. I was then put on the newest drug, Denosumab, which is a simple injection under the skin, not into a vein, given every 4 weeks. Within a few days of having the first injection all my pain had gone and I haven't looked back since! It's certainly the easiest of the 3 types of bone strengthener I have had in terms of side effects and also the restrictions on eating and drinking that come with the tablet form. I wouldn't have been moved off the tablet form though unless my bones had stayed stable but it is worth asking for at your oncology unit. It is a more expensive drug, certainly more than the tablet form, but there is very little nurse time and equipment used if you compare it to the IV ones. Also it has been shown to have better results than the other forms of bone strengthener.
Hope this helps
Nicky x

helen44
Member

Re: Bone mets

Hi there,

Denosumab is the preferred drug choice I understand from my onc. I was dx in Dec 2012 with primary bc & secondary in bones; Denosumab had just finished being trialled against zometa & there were good results so I was put straight on it. 21 injections later & I have very few side effects - just fatigue for a couple of hours after the injection - I am very happy with it!

Good luck with your treatments.

Helen (another one!) xx

2catlady
Member

Re: Bone mets

Hi,BClass,I think the denosumab injection is the never drug. I'm having my first on Wednesday as the lady who changed hospitals for me said I should be on that as it's better than the IV bone strengtheners ,but honestly I haven't a clue if works better or not. But as long as it's protecting bones I'll take it.
Huge hugs,Helen xxxxx
bc-lass
Member

Re: Bone mets

Hi - whats the view on bone strengtheners? My onc has me on ibandronic acid and I am currently stable but I hear about zometa and denosumab too. Are these meant to be more beneficial?

2catlady
Member

Re: Bone mets

Hi,laws ,so sorry to read your mum is still in pain. Your mum should be on IV zometa or Denosumab injections if she has bone mets.so if she's not please ask about having one of these.She may also need another blast of rads to area. Or she may need pain meds tweaked. See if you can speak to a pain management specialist or a Macmillan nurse who can advise you on pain relief . They tend to work hand in hand with GP.
But you must get some sort of plan to help your mum.
Huge hugs,Helen xxxxxx
Law36
Member

Bone mets

Hi my mum has got her cr scan tonight as it has been over 2 months since she had rads to her pelvis area ! And results of the scan are on the10 sep !! I was just wondering if anyone could just give me some advice as I read the thread everyday without fail ...... The rads did help a lot with the pain and eased a lot but after a few weeks the pain has slightly come back and my mum walks with a limp now as getting up and sitting down really hurts her ! When she sitting there is no pain and when she is standing no pain ,,, which is great but bending and walking is not getting easier !;-( I have read up on bone injections to strengthen I was just wondering if anyone has had these and whether they would be beneficial or not for mum ? I just want to get ready for this app on the 10 so I know what questions to ask the specialist Thankyou all and would just like to say I find this thread so positive and it has really helped me learn a lot which I have passed on to mum Thankyou xx