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  • Gilaine posted an update 10 years, 11 months ago

    Hi still lookijng for anyone else with smoldering Myeloma who is being treated with Zometa ?I can’t be the only one ?

    • Hi Gilaine.
      I don’t have smouldering MM. I have had my first transplant (April 2012) and now have Zometa every 30 days to 6 weeks. I live in Belfast and the Zometa is funded without problem. I worked in Healthcare (Senior Management) all my life (I am now 59) and know the cost of the drugs we need / use. Although Zometa is pricey, it is not extremely overpriced. Have you spoken to your MP about this? Anything I can do to assist or queries I can answer, I would be glad to help or research for you. Good Luck!

      • Hi Jimbob not sure if you got my first reply as i used my phone .My situation has now got more complicated and very stressful .I thought it was bad enough being diagnosed i had know idea i would be faced with this situation .
        The consultant in my new hospital asked to see me again .He was quite angry and said that if i insisted .Which i didn,t i simply asked why my treatment was being changed just because i had moved area .
        Anyway he said i could now continue with the Zometa although he strongly advised me not to due to the side effects .
        Imagine my confusion having been told by my original consultants H that Zometa was my best chance of keeping the Myeloma at bay as well as protecting my bones and that i would be on it for about 2 years .
        I explained my confusion to the new consultant who finished by saying i could save myself the decision and do as my doctor told me .I wont be seeing him again .Myeloma UK have advised i seek another opinion .I had know idea this could happen .Dont consultants communicate with each other ?