Dear dbrr

NICE is the institute in the UK which gives approval for drugs to be used on the NHS, equally they also refuse drugs (usually due to cost). The only way in the UK to get drugs which have not been approved for NHS treatment is to go on a clinical trial. The USA and Europe seem to have slightly more ammunition to fight mm than the UK at…[Read more]

Hi Sabs

I have read of patients getting myeloma in their 20’s in an American forum. It would appear that patients are being diagnosed younger and younger as 15-20 years ago this was considered an older patients disease (65-75) , and I suspect that that is the reason for OS at that time being so poor.  Of course today there are the novel agents…[Read more]

Dear Mike

Thank you for your reply and kind words. I do believe in gaining as much knowledge about ones disease as possible, even though at times it is not comfortable reading. If I have helped one person with this information then I am happy. Another well know phenomenon is oligoclonal banding which commonly occurs after asct.  Fingers crossed…[Read more]

Hi Simone

I have just posted a new topic on secondary mgus which gives my history of mm. I was 51 when I was diagnosed and was told I had probably had it for at least 2 years. I went into renal failure, and 3 vertebra collapsed for which I had vertebaplasty. My back pain disappeared overnight with this procedure and it felt strong again. This…[Read more]

Hi Bluelibran,

I’m sorry to hear that you are having to deal with multiple diagnoses. I can’t help regarding your query as I have just the myeloma to deal with, but I wanted you to know that I hope things turn out well for you and I will say a prayer for you. Keep strong and stay positive.

Sue

Hi Kitson

I too have lambda light chain myeloma. It is more troublesome from the kidney point of view. Lambda flc are a little bigger than kappa flc so can block the filters in the kidneys resulting in kidney damage. My flc were 6900 when I was diagnosed, my creatinine was 241 and I was in acute renal failure. Drink plenty at least 3 litres a day…[Read more]