Hello Yvonne. Sorry to hear that. I was diagnosed with smouldering myeloma about 6 years ago now, and it is quite overwhelming. However, I have remained fairly stable throughout that time. Like you, I was unhappy with the just “wait & we’ll monitor you approach”
Firstly, I read a great deal of the research, and am up to date.
Secondly, I use a US site, patientpower run by Andrew Schorr, which I have found quite helpful
Thirdly, I am quite careful about diet – not as much as I should be – and did more than the 5 a day, and drink plenty of water, which was the limit of the hospital advice
Fourthly I went down the dendritic cell therapy route in Germany, but this is expensive and altho this is supported by scientific theory, there are no blind trials or conclusive evidence. as such it will not be supported by an insurance company, and can not be recommended. I think it may have been helpful – but that is the limit; it is only anecdotal .
Fifthly, you need to discuss with your consultant whether you are at high risk or not of progressing to full MM. there are tests that will be carried out, or probably have been carried out
sixthly, I check my blood results myself and am aware of their meaning
and I also do some complementary therapy – but mainly because I enjoy it
hope this is helpful
good luck
marion
