Dear Sandra, My name is Ellen and I am one of the Myeloma Information Specialists at Myeloma UK. I am sorry that, as yet no one has replied to your post, I hope this doesn’t put you off posting on the forum in the future, it is generally very supportive.
I am sorry to hear that your husband was diagnosed so late and that his kidneys had failed. A light chain reading of 36,000 is high and is likely to have caused the kidney damage. Myeloma UK has an Infoguide on Myeloma Kidney Disease which I hope helps to explain things for you. I have provided a link but please let me know if you would a hard copy and I can post one to you.
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/symptoms-and-complications/myeloma-and-the-kidney/
Velcade is a very effective treatment and I hope it is getting on top of his myeloma and reducing his light chains effectively.
Myeloma can be staged but this is only done at diagnosis and tells the haematologist the amount of myeloma (or tumour load) the patient has. It is not particularly useful for determining what treatment a patient should have or what the prognosis is likely to be. The doctor is, therefore, correct in saying that staging in myeloma isn’t particularly important. However, having kidney failure will make a difference to what treatment he gets – Velcade is recommended for those with kidney problems rather than a thalidomide based combination, so your husband is getting what’s best for him at the moment.
I hope this has been of some help but if you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332, alternately you can email directly to askthenurse@myeloma.org.uk and I or one of my colleagues can clarify things for you further.
With best wishes
Ellen
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This reply was modified 9 years, 3 months ago by ellen.
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This reply was modified 9 years, 3 months ago by ellen.