[KS1960]

DrAnton - Great post on your experience

by KS1960 on Fri Feb 20, 2015 7:34 pm

I wanted to let you know that I found your post to dvdauthority really helpful. Your experience sounds similar to my husband's.

We just got the test results back staging him as smoldering myeloma this week: mProtein of 1.3 g/dL (13 g/L), anemia, fatigue, elevated protein, creatinine and calcium (but not high), bone marrow at 45%.

I am wondering if we should ask for a PET scan in addition to the skeletal xrays that were done. Not sure what that would do for us, as I am not sure my husband would opt to begin treatment yet.

I think we will watch for a few rounds of blood tests to see if the disease is progressing. I believe we caught it at the very start, which is a good thing.

Best wishes to you in your journey!

[Multibilly]

Re: DrAnton - Great post on your experience

by Multibilly on Fri Feb 20, 2015 8:01 pm

Kate,

45% plasma cell involvement in the bone marrow is not exactly a low number. I would therefore personally be pushing for a PET/CT, just to be certain of things and to have a baseline scan in place. But that's just me. I also take comfort in knowing I've got all my bases covered when it comes to tests, but I recognize that others may not feel the same need to do so.

In one recent study by Dr. Landgren, it was shown that 30% of smoldering patients in his study were incorrectly diagnosed as being asymptomatic because xrays had not caught lesions that were present in the patient's skeletons (the presence of lesions were verified by PET/CT in the study).

BTW, what are your husband's kappa and lambda free light chain values?

[KS1960]

Re: DrAnton - Great post on your experience

by KS1960 on Tue Feb 24, 2015 7:55 pm

I do not seem to have written down the kappa and lambda free light chain values, and they are not on the documents I brought home!

We have an appointment in two weeks and I can ask, although I think he mentioned they were not greatly abnormal.