Denosumb/zoledronic acid/what else is there?

FormerMember
FormerMember
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I have secondary breast cancer of the bone in spine, pelvis and skull.  I recently had a denosumb injection for bone strengthening but the side effects were that bad I have chosen not to do it again.  I have seen my oncologist today and was handed a leaflet of an alternative Zoledronic acid which would be given by IV.  Looking at the side effects on that one I don't fancy doing that either.  My condition is terminal and I don't want to waste my time left being so ill from side effects I am unable to do anything.  Has anyone else experienced this problem and does anyone know of a gentler treatment with kinder side effects.

  • FormerMember
    FormerMember

    Hi - I have secondaries in spine and take Alendronic Acid . Used to take it by IV but have moved to a different area and the don't offer that here. Instead I take it in tablet form once a week. You have to take it on a complete empty stomach with a full glass of water and have to remain sitting or standing upright for 30 minutes after taking it. After that time you can take your other medication and eat and drink as normal. No side effects for me from either IV or tablets. Hope this helps/

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks for your reply Christine. That's the answer I was hoping for. I will ask my oncologist if I can try Alendronic acid. 

  • FormerMember
    FormerMember

    Hi. I too have secondary bone cancer and I can only give you my own experience. I have been having the Zolendronic Acid IV. Every 12 weeks. I too was very fearful of having this treatment but felt I had little choice. It can make me feel tired and I ache for a day or so afterwards, but I rest up and have found that I do not have any other side effects from it. I was diagnosed in August and the cancer had destroyed some areas of bone. I recently had a further scan to see if any changes had occurred and I could not believe the change in the bone. The bone has rebuilt, this I am told is due to the Zolendronic Acid IV and as I understand it, the bone does not repair in the same way as it would without the cancer and I have to take care as the bones are brittle. But I do not know where I would be without it.  

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for sharing your experience. I hadn't realised such a good result could be achieved I thought it was just to prevent future fractures. I'm glad you have had a positive experience from it. I will give it a try and hope things work out for me too. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jen, Chris and Miss Bee,

    ive been on zoledronic acid (also known as Zometa) for a year now and I’ve really noticed a difference, I have bone mets in most of my torso, the spine was affected badly, fractured and then collapsed down but the zometa has really made me feel stronger

    i definitely recommend it as pain has got better as time has gone on

    wishing you all well in your treatment 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi thank you for sharing your experience I am going to agree to do it at my next appointment with oncologist 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi, I am starting Zometa on Monday. I am pleased to know that drug works well you. I am hoping it will also work for me. Mine is on the spine and bones, had to undergo hip replacement last Nov 2017, had chemo and radiotherapy plus monthly Denosumab injections. My onco replaced the injections to Zometa as I was having very low calcium levels with it. I hope I wilk feel stronger like you as well.

    Thank you for sharing, you gave me high hopes with the treatment.x

  • FormerMember
    FormerMember in reply to FormerMember

    Hello there silver tears, I too often have low calcium levels - I did not put it down to the Zolendronic acid infusions, but assumed it was the chemo drug. I suspect it is worth having a word with my oncologist. To see if it's worth considering. Thanks for that. 

    Miss Bee.

  • FormerMember
    FormerMember in reply to FormerMember

    Many thanks Shoes,

    It just lifts you when you know there are some positive outcomes to all of this.I was diagnosed August 2019 not thinking there was much hope as I was in so much pain and felt very disabled. I have it in the spine, neck and ribs. Things have definitely improved. 

    My daughter said. Mum, try to find some good in all of this, you will come across many people on this journey that may become friends or be an inspiration to you. Find things that you can enjoy. Some doors may close but others will open - you just have to find them. So, I started writing a book. Something I have threatened to do and never had the time for - now is the time. Thank you.

    Miss Bee.

  • FormerMember
    FormerMember in reply to FormerMember

    Aww Miss Bee, your daughter sounds very supportive and amazing, I’m very lucky to have a daughter too that picks me up when I’m feeling down

    its tough on everyone this awful disease but I know some people who are on the same meds as us and are still going 10 yrs on

    theres hope that more meds are researched in this time, apparently Palbo is only a few years old