[deandrag]

MGUS diagnosis - should we just watch and wait?

by deandrag on Thu Aug 04, 2016 2:15 pm

Hello,

I have been lurking and reading quite a bit while we have waited for my husband's test results to come back but now feel we still have questions unanswered.

He was referred to a kidney specialist in May for abnormal kidney functions in which that doctor did a different lab workup and found the M-spike and kappa light chains to be a little high.

We then were sent to a hematologist/oncologist and he requested a bone marrow biopsy, bone scan, 24 hour urinalysis and additional lab work. My husband's lab results are below. We are to come back in three months and then six months.

His bone marrow biopsy indicated only 3% polyclonal plasma cells which from what I have read is good.

His 24 hour urinalysis just stated abnormal and when I asked the doctor for a copy of the pathology report, he stated he did not have a copy. So I asked him what came back abnormal and he stated for a protein, again I had to ask him what protein. He stated for kappa light chain.

So now I am waiting for my husband to call the lab so they can mail us a copy. Very frustrated with this as I would like the value of how high it was.

The doctor also asked him questions about when he turned it in if it was almost full. We were very rushed during this appointment and I forgot to ask about the value.

The skeletal survey stated no suspicious lytic osseous lesions. My husband does have back pain which is attributed to the discs in his lower spine virtually collapsed. The doctor kept asking him over and over yesterday if he had any pain, and inquired more about the back pain and when it started and how often he has pain, which I thought a little odd since I was pretty sure we went over this on his first visit.

June 10

M-Spike - 0.3 HIGH
Free Kappa Light Chain, S 25.92 HIGH mg/L (3.30-19.40)

June 22

Immunofixation, serum, interpretation
Kappa light chain free 23.41 HIGH (3.3-19.40)
Lambda light chain, free 13.08 (5.71-26.3)
Kappa-lambda FLC ratio 1.79 HIGH (0.26-1.65)

Beta 2 microglobulin 1.83 (0.6-2.29)

Hemoglobin

June 24 - 14.3
July 1 - 14.1
Aug 3 - 16

Calcium

June 24 - 8.9
Aug 3 - 9.8

BUN

June 24 - 21
Aug 3 - 17

Immunoglobulins, June 22

IgG - 1338
IgA - 311
IgM - 81

His blood work from yesterday stated also

MPV 11.1 HIGH,
LY% 43.9 HIGH,
EO% 4.3 HIGH,
GFR estimate > 60

I am wanting to make sure we are asking the right questions and on the right path for watch and wait.

Do you think we should get a second opinion or just wait for his next three month appointment?

[GinnyD]

Re: MGUS diagnosis - should we just watch and wait?

by GinnyD on Wed Aug 10, 2016 3:48 pm

I'm no expert, but wanted to just tell you that based on the numbers you've shared, you're probably safe to wait the three months. I would, however, encourage you to go ahead and get involved with a myeloma specialist, if for no other reason than just to establish peace of mind as you navigate this process. I know it's frustrating – I've been dealing with it for about nine months now myself and just finished my third round of tests.

[Multibilly]

Re: MGUS diagnosis - should we just watch and wait?

by Multibilly on Sat Aug 13, 2016 10:32 pm

Hi Deandra,

Welcome to the forum. I would agree with Ginny that your numbers are very modest. And I would also underscore seeking out a multiple myeloma specialist.

Did the nephrologist determine the cause of the abnormal kidney function? Given your husband has a normal GFR and BUN level, just what signaled abnormal kidney function in the first place? Was there any discussion of testing for amyloidosis given he does have abnormal kidney function and an elevated free light chain level and an M-spike?

I might also suggest discussing getting a spinal MRI given your husband is experiencing back pain and has a diagnosis of MGUS. MRIs are more sensitive than skeletal surveys at picking up potential lytic lesions.