Saturday 31 August 2013

Myeloma Journey

Hi All, this is my first post in hopefully a long line of posts. I was diagnosed with Iga Kappa MGUS 4 years ago but 4 weeks ago found out that I now have high risk Smouldering Myeloma. With an abnormal Kappa/Lambda ratio and 15% plasma cell load (plus Iga papaprotein which has a higher risk of progression than other types of Myeloma) I am debating as to whether I should enter into early treatment. I live in Australia and at present first line treatment is still " watch and wait" until some signs of end organ damage is present. I am wondering if anyone has gone down the early treatment course and what the results of this where.

Cheers, Leigh


  1. Hi Leigh,
    I was wondering what is the number of your kappa/lamda ratio? At UAMS-MIRT in Little Rock ARK. they measure it more finely with a g/dl ratio.
    I too am smoldering and awaiting the Natural Killer cell trial??? if I qualify, hopefully at the above institution. Sounds like from your figures you might qualify. It is a long journey from down under to Little Rock but it might be worth checking out.
    Good Luck

  2. I stand corrected the measure is MG/DL not grams/dl
    I recommend if you have not already check out International Myeloma Foundation they have many publications on MM.

  3. Hi Keith, my kappa/Lambda ratio is 7.9. Kappa 38mg/L Lambda 5mg/l (Done by FLC assay). Plasma cell load is 15% and Iga spike is 12g/l. I am heading back for my 8 weekly blood tests next week and they are also now testing for LDH so will be interesting to see the results of that. At present I have not had any other symptoms although I am starting to get some dull aches in my kidneys and very frothy urine from the extra protein. In Australia you normally have had to have 2 rounds of treatment before you qualify for any clinical trials but I have already offered my services to the relevant groups.