Anyone receiving Denosumab XGEVA

Is anyone here receiving Denosumab XGEVA for metastatic bone cancer

Ive been advised to have this by injection  to slow the progression of the cancer and prevent bone fractures.

Id like to know how well it is tolerated and what side effects you have experienced.

Thanks in advance

Ed

  • Hi Lee good to hear from you and pleased to hear you are still taking those lovely trips abroad.   I did go to Menorca but bloods are always a worry as they always drop considerably but they do go just enough for treatment time.  Off to Norfolk next week snd hoping to go to Florence in October.   I am just careful with masks etc when on planes and buses   How are you Ed hooe all Ok with you too.   Keep stable everyone and enjoy this bit of rain.  

  • Hello Lee 

    What a nice surprise to hear from you. Its good to know that you are getting on with and enjoying your life and overcoming the limitations that cancer inevitably brings to us. I do still work but on my terms as fatigue gets to me and like you the cancer in my spine brings physical problems and pain. However work is a therapy for me and keeps me fairly fit. As you know the importance of exercise having gained those few extra pounds when you couldn’t walk your dogs. The drought has been a disaster for farmers this year the worst I've known, even my small kitchen vegetable garden has suffered badly. You rightly surmise that food will be more expensive. We've got a trip to Brittany in France planned and a trip to London to visit Family and do some sightseeing. I can only travel for short periods sitting down as my back aches too much. Portugal would be my limit flying. The Denosumab seems to be keeping my spine in good shape but my immunotherapy is coming to an end soon as Ive nearly reached the 2 year limit (and £100,000 of NHS funds). I hope that the Oncologist is correct that the Cemiplimab will continue to have an enduring effect on my immune system's ability to fight cancer even when treatment ends. It has been a life changer, giving me a good quality life. Privately it costs £5000 per 3 weeks so out of most peoples pockets short of remortgaging house and everything. Ive caught snippets of your trip to Iceland on this forum and McMillan sounds great place to visit. Enjoy your trip to Praia De Luz, I love Portugal.

    Ed

  • Hi both.  glad you got to Menorca Cosmopolitan and hope you get to go to Florence.  I have never been but heard it is beautiful.  I don't wear masks at all, never really thought of it.  I didn't know that there was a limit to the treatment/cost of our cancer treatments Ed, nobody has mention it to me before.  I know oncologist had to apply for funding tor the targeted therapy.  Yes I think Portugal is the limit for flying for me too.  I wanted to go to South Africa but the only way I could fly would be business class so I could lie down.  The price would be £12 000 for my husband and myself.  Well who can afford that?  Yes Iceland was amazing and the Northern Lights spectacular.  (It's a pity we can't post photos on here like the Macmillan site.)  We have been three times I love the place but it is very expensive there.  I love Portugal too and loved Tavira.  I haven't' been to London for ages, I find it too peopley.  

    Lee xx

  • Hi Lee

    I would definitely love to see the Northern Lights what a fantastic experience. As you know all about back ache caused by cancer in spine like you I can sit for about 2 hours max. So 2 hours in a bus, 2 hours on a plane, trains are OK because you can have a walk up and down the train to stretch. For me London is a nice change because it is so different to the rural area I live in Also visiting family as the reason to go there means I don't feel like a tourist, although I do find it it a really interesting city to explore.

    NICE the people who approve drugs for use in NHS have to be satisfied by cost / benefit of these expensive treatments. NHS does not have limitless money. So the Cemiplimab immunotherapy I'm receiving can be taken for a maximum 2 years or treatment can be stopped before that if the drug stops working or toxic side effects become too great. The cost privately is £4600 + VAT per infusion. The NHS gets a discount so even if it is half price that's still around £50,000 per year. Then there is costs to administer it and review patients health plus 5 blood tests every 3 weeks another few hundred pounds. The Denosumab Xgeva  injections we both receive to protect our bones can be given for life, probably because the cost is around £200-£300 per dose. 

    Well you should currently be soaking up the relaxed life on the Algarve, enjoy every minute.

    Ed