Hi Jonny, Sorry that you are here. If you are high risk then you likely have a translocation known as high risk. I have translocation 14:16 known to impact kidneys and therefore considered aggressive. I was diagnosed at 50 with kidney failure altho my Mm was relatively low. However, this Xmas will be 6 years post SCT, in remission still, and not on any drugs. MM is very individual and unique to you – you are not a statistic and the translocations that put you in the high risk category – are a mere “predictor” of high risk – how you react to MM is very individual. My Mm was easy to treat and that is the most important thing. Some translocations are effectively combatted with the newer drugs also. How you react to treatment is more of an indication of high risk. If you search on the Beacon site and internet you will find those classed as “high risk” who have been treated very successfully and are long “livers”. You can always find the success stories that show how individual MM is and that is what I always focussed on. My kidneys were badly affected – mainly due to long standing misdiagnosis – I was told my kidneys would never improve and was in the low 20s after Sct (which was an improvement). Over 6 years they have very slowly increased and are now at 46%. At my last consult I actually pointed this out and queried how this could be? and was told it can happen over time – but no-one told me that when I left hospital and my worry over kidneys was as much as the MM. I used to search for success stories to give me hope – and rightly so. Statistics may be a predictor for the average person but – you are neither Mr Average and you are also very young, strong and with lots more treatment options available to you due to your age – than the “average”. The more you read about MM the more you will see no 2 people have the exact same MM, no 2 people react the same. Some people with standard risk may struggle to find a treatment option that works effectively with long remission which would make them more high risk than how I consider myself now – albeit I am classed as high risk. It takes a while (understatement!) to get your head round MM but you are in this for the long haul – a marathon not a sprint – there are so many treatment options now. Also remember when you look through stats online etc many of these were before the new more novel treatment drugs and the average age of getting MM is much older and there may be other health issues also. It is extremely hard to have to live with MM at such a young age but your body is stronger for the challenge – now is the time to focus/work out how to keep mentally strong and live well with it.
Rebecca
