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  • jillspikesmum posted an update 3 years, 3 months ago

    Happy New Year to you all, hope you are all coping with the COVID lockdown the best you can. I was diagnosed with Bence Jones Myloma 2 yrs ago, and it 2 yrs to get light chains down to a level for a Stem Cell Transplant to be viable, as I was told my Myloma was ‘aggressive’. I was told on 23rd Dec I have had ,very good partial response, to the Melphalan and SCT, AND I am now in remission, which is great news. My questions are “why don’t I feel more elated, I feel like I’ve been cut loose” and have no idea what to expect next. I’m told I will continue with Bisphosphonates 3 monthly, and a blood test in 10 weeks time. My main question though is why I haven’t been put in any maintenance drugs? I’ve read lots of posts about people having to source their own drugs, like Lenalidomide, from India – but my consultant didn’t mention anything about maintenance medication, he just said it wasn’t necessary. Has anyone else been told they are in remission, and not given any maintenance meds? I just take my morphine based pain killer and Septrin twice a week to help protect me from pneumonia.