Hi- have just been diagnosed w multiple bone mets and have had radiotherapy to two areas which has only helped marginally w the pain and I am now waiting for radioistope treatment. Has anyone had any experience of this treatment pse?
First had BC in 1996 and secondly in 2006(mastectomies on both occassions)I take Arimedex and Bondronate daily.
Hi Beatrice
Welcome to the “club no one wants to join”, and to the BCC secondaries boards. Getting a secondaries dx is so shocking and scary, but there are a lot of us who have had great success with our treatments, and we’re here to support you, whenever you need info or advice.
I’ve been living with bone (and liver) mets for over six years, and have been lucky with Bondronat & Aromasin (like Arimidex, an aromatase inhibitors) in that my bone mets are relatively stable. I did have a couple of doses of radiotherapy at the beginning, and remember it took quite some time before these had any affect on my bone pain. The Bondronat has certainly worked very well for me, reducing my bone pain to “almost none”, and “kicking in” on the few occasions when I’ve had a bit of progresion, making pain disappear after a couple of weeks.
I haven’t had radio-isotope treatment, but I’m sure someone who has will spot your post soon. You could also ring the BCC helpline (phone number at the top of every page on this website), where you’ll be able to get more info about this and BC mets generally.
Love & hope, Marilyn x
Hi Beatrice,
I’m sorry to hear you’ve been diagnosed with secondary BC, and hope you are keeping well. I have put for you below links to some of BCC’s secondary publications which you may find useful.
Secondary Resource pack
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/2/
Secondaries in the bone:
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/7/
I have also put you the link to information regarding ‘live chat’ which you may find a good support.
Live chat:
breastcancercare.org.uk/community/live-chat/
Take care,
Jo, Facilitator
Hi Marilyn,
I hope you get this; I don’t have a comment box under your reply. Thank you for telling me about yourself - it is always good to hear of long term survivors and you have made me feel much more positive so thank you for that!. I think I would be ok if I had less pain; I can only take ordinary paracetamol as everything else makes me very sick. Hope fully the radiotherapy will kick in properly soon and the radioisotopes will do the rest.Beatrice.xx
Hi again Beatrice
It’s so hard for us and our loved ones to get used to our “new normal” lives when we have a BC mets dx, and even more challenging when we’re in pain and subject to the great unknown of new (to us) treatments. I do hope that the combination of radiotherapy and Bondronat sort out your pain very soon, and that the radioisotope treatment gives you the “icing on the cake” of pain relief!
Do have a look at the info on the BCC site (links in Jo’s post), and don’t forget to ring the BCC helpline if you want more info and support. Plus . . . if you live in the UK, you can ask for support from a MacMillan nurse and make contact with your local hospice (either directly or via your GP or oncology team), that will be full of nurses, doctors and complementary therapists who can give you great specialist support linked to cancer. They were my first port of call when I had my mets dx in 2003, and were (and still are) wonderful.
Marilyn x
Hi Beatrice
There are plenty of us ladies on here with bone mets so maybe one of us has heard of radioisotope treatment? Unfortunately I can’t help as I haven’t. As Marilyn has said it is a huge shock to know you have secondaries and being in pain must make it all the more scarey. From other postings in the past on here I think that rads to the painful areas take a little while to be effective so I hope that they soon kick in and help you. Also, I don’t know how long you have been on the bondronat tablets? These also take a while to work so with any luck these will also be gradually helping you. There are other posts on here (somewhere!) about different pain reliefs that have worked so it may be worth either doing a search on topics or asking a separate question.
Good luck and I hope you get some better answers than mine! Getting a secondary dx is so awful, we all know how you must feel, but these forums certainly helped me in the beginning to know I’m not alone and I’ve had some good advice and great support - and still do!
Take care
Nicky xx
Morning
I hope you don’t mind my popping in here, but I wanted to let you know that Live Chat for woment with Secondary Breast Cancer is due to start at 11.30.
Please follow this link
breastcancercare.chatjet.com/bcc/
which will take you directly to the live chat page.
Best wishes
Poppy
Hi Poppy
I have tried several times to get into Live Chat again but no joy. I post a message but nothing comes up. Have to go now as going for a scan but could you check this out for me. I have asked before on previous unsussessful attempts.
Thanks Anne
Hi again everyone,
I had my radioisotope treatment yesterday and there are no supposed side effects so I am now waiting for the result in 3-4 wks time-that’s how long it takes for the treatment to work. If the pain lessens/goes away then it is working- there will be less toumors in my bones!So fingers crossed.
As there has been no response to my posting this several weeks ago I take it that noone on this site has had the treament? Hmmm.
Bye all Beatrice
Hi Beatrice
I hope your radioisotope treatment is a great success. I have never heard of this treatment, and judging by the lack of response, this must be quite an usual treatment. Is it new? How is it administered? As someone with bone mets, I am intrigued to know more about it.
Best wishes
Linda
Hello Beatrice, I too would be interested in your recent treatment as I too have bone mets.
I got diagnosed with bone mets 11 years ago and my original diagnosis for BC was 21 years ago!. I too take Bondronate and Letrozole ( hormone blocker similar to yours) plus various painkillers including morphine. I have had readiotherapy too and found it helped but took a wee while to show an improvement. Like Linda I would love to hear about this new treatment if you don’t mind sharing. Take care, Love Val
Hi Ladies,
Forgive me to butting in, and l may have it completely wrong, but l had a bone scan last week and they called it Radiosotope bone scan! not sure what or if there is a connection, but mine was just a bone scan, so are there two types?
Sandra
Hi sandra4 and scottish lass,
Yes it is the same dept as bone scans and basically the same substance. I was injected with Samarium- very quick and easy and it will tackle the cancercells from inside the bones as well as relieving the pain although that will take 3-4wks. My consultant is very positive about this treatment as I have not got cancer anywhere else at the mo.It can be repeated after 6 months if needed.I felt a bit off yesterday and have got the increased bonepain as predicted but that will ease in a day or two supposedly.In the meantime I am off to our local cancer centre in Sheffield today to have some alt therapy for the pain.
Coming back from the treatment it hit me hard that this is ongoing and I felt rather like I did the first two weeks after my dx 6wks ago; I will always have cancer and there is no “cure” as with my two primaries but I am sure that I will feel better when the pain lessens.
Good luck to you both.xx
Hi Beatrice,
Be interesting to hear if anyone else has been treated with the injection of Samarium? l know so far you have had no response…hence the bump up…
Never get use to any of this rubbish do we. Hope the pain soons eases for you.
Enjoy your treatment today, certainly deserve some pampering
Take Care
Sandra xxx
Hope you are pain-free soon, did they not prescribe anything to get you over these days? Can I ask which hospital you had this treatment at? It sounds very interesting if it is actually killing cancer cells in the bone.
Best of luck
Linda
Hi Linda and all,
I am with The Christie in Manchester and have been since 1996.My consultant and I are on very good terms and I do trust him.
Just got back from alternative therapy in Sheffield; spiritual healing and I found that it very relaxing and helped w the pain for a while. I am a Reiki practioner myself but found it very beneficial to be given a treatment by someone else.
I have a problem w taking oral painkillers of any strength as I “overdosed” on co-codamol and ibuprofen for several months in the winter while we thought I had a frozen shoulder and old backproblem.So I am just taking normal Paracetamol or I start to vomit.
If I cannot get rid of the pain I shall have to have something stronger as the pain rules my life at the mo.Rgds.xx
Hi Beatrice, Have you tried Oramorph which is a morphine medicine which is in liquid form? I only take it now when I have “breakthrough” pain and it is really effective. I am also on slow release morphine which I take by tablet morning and night. May not be suitable for you but it is a tiny pill compared to paracetamol. I take various other painkillers and was refered to a “pain specialist” who is attached to my own hospital. She helped me enormously and suggested patches for pain which I have but have not used in the last 12 months.She also gave me a TENS machine but oddly I have not needed to use it yet. Good luck with your pain problem. Hope you get some relief soon. Love Val
Hi Val,
Thank you for the tips on painkillers; I will find out if there is a pain specialist at my hospital; my consultant told me to speak to my GP re painrelief as “they are much better at it than we are”…Since I had such violent reaction to codein, ibuprofen and also Piroxicam he suggested ord. paracetamol for a while. I think a pain specialist may be the answer for me - I suppose they also try to help you to control the pain w your mind? I was told the ins and out of that yesterday at the alternative clinic but think it needs quite a bit of practise. I am pinning my hopes on the Samarium at the mo and hoping that it will eliminate the sever pain anyway in 3-4wks time as they said.
LOve and thanks.xx
Hi all,
I haven’t had radiostope treatment but I have an elderly friend who has just been offered it so was interested to see this thread. She has been offered a different type than you though Beatrice, I think she said it was strontium89 ? There is a little bit of info on the Macmillan website under secondary bone cancer (sub-section radiotherapy) for anyone interested.
Hope all the treatments/side effects going well.
Julie x
Hi JulieD,
Yes, I knew about strontium89; a friend w prostate cancer is having it and it has been used for that cancer for quite a long time.I will be interested to hear how your friend finds the treatment effects her if you speak to her.Around 3 weeks from now I will know how mine has worked! I don’t think there is enough info on the Macmillan site, do you?B.xx