[heathermullenParticipant]

Hello Marian,

I have been supposedly smouldering since I was diagnosed 2 1/2 years ago.  My blood results have remained low throughout, para protein being always less than 10 although plasma cells have been 22, which is higher than should be for someone smouldering apparently.  I too though have had a great deal of pain and fatigue throughout this time and have been constantly told it must down to another condition and to go back to my GP, which I have repeatedly done.  The pain became unbearable 10 days ago so a scan was arranged ‘to be on the safe side’, I haven’t had one for more than a year, and more blood tests.  The blood tests came back no significant change, still low, but scan has shown I have significant bone damage caused by myeloma!  I had a phone call from the hospital telling me this today and that I need radiotherapy straightaway.  Apparently it is rare but it can happen that myeloma can be active and cause bone damage whilst blood results can be low.  I wish I had insisted on having scans more often, no assumptions can be made it seems that myeloma is going to proceed the same way for everybody!!

 

[marianParticipant]

Hello Heather

Thank you for your reply.  It was very useful.  I don’t have severe back pain like you but enough that I’m waiting for an MRI scan and an Osteoporosis test.

I have heard there are some centres that give treatment earlier rather than later, have you or anyone else heard of that?

Anyway Thanks again and good luck with your treatment.

Best wishes

Marian

[graham-cParticipant]

Hello Marian.

It does seem strange that you have paraproteins so high, and increasing, without more intensive investigation. In my case with MGUS and an increased reading of something like 10 they called me in unexpectedly, which caught me unawares. It turned out to be nothing but your results are very high.

The term ‘asymptomatic’ is interesting as I would normally think of physical symptoms when it’s mentioned but I understand that it could also include other blood results, but I always take the paraprotein level as the baseline marker for myeloma activity (or flc’s if it’s free light chain myeloma). I know they perform broad range blood tests looking out for increased levels of calcium (bone damage) and eGFR (kidney damage) and many others, but it would be nice for you to know the reason for holding back on treatment.

I doubt you can have ever-increasing levels that won’t eventually do you harm, but maybe they want to know where it is affecting you/will affect you, before they treat it. From my own non-myeloma experience I know that sometimes the treatment can be worse than the ailment, but knowing their strategy would be useful to you.

[Author]

Posts