[jmsmythParticipant]

Hi All

The mind boggles. I'm beginning to wonder if the right hand has any idea what the left hand is doing. At hospital this morning and saw registrar. He said there was good news the protein had dropped to 9. I told him that according to the consultant this was not good news as the protein had been steadily dropping over months before CDT had started. I told him she had mentioned in passing non-secretory myeloma but I could not understand the possibility of Frank's myeloma changing to non-secretory after 6 years. He went on to say that it was very very rare but the only way to get predictors was for Frank to have another BMB but they didn't like doing this!!! All other bloods were good and that going to start Zometa in 3 weeks time. As I said when starting the post "the mind boggles".

Love Jean xx

[HelenParticipant]

Dear Jean
I don't know about right hand or left hand here, but you do not seem to be getting the same sort of information that I do.
I'm a low secretor ( oligo secretory) but I had an IgA pp (paraprotein) level of 6 and a Lambda light chain reading of 700, Bmb showed 60% marrow involvement on day of diagnosis. After a month of therapy I had pp of 2 and SFLC ( light chains) of 53, over the next 3 months I went to 0 on pp and 17 on light chains and bmb showed 0% mm cells- classed as complete remission.
So they way I interpret things, you should see the pp drop as low as possible.
Ask are they talking about paraprotein levels, Or are they talking about blood protein levels? These might be what they are talking about and they can fluctuate but I really don't understand what you are being told here maybe someone else has a clue, better still ask for a print out of the results, speak to the specialist nurse or phone Ellen on the site.
I'm really concerned that you seem to be left so much in the dark, especially as we are encouraged to 'know our numbers' these days.
I do hope you can make some sense of this soon, it must be quite worrying for you. Let us know how you get on.
Love Helen

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