[lys2012]

Partially secretory multiple myeloma - is that a thing?

by lys2012 on Sat Jan 28, 2017 4:08 pm

Hi,

I know there is regular multiple myeloma and nonsecretory multiple myeloma, but is there something in between?

I have posted my backstory before. I have been in a slow relapse for a while, and my initial diag­nosis and treatment was in 2010. So at my last follow-up, my doctor says we may be starting treatment sooner then she thought. My M-spike is still low at 25 g/L (2.5 g/dL) and hasn't moved much (considering when I was diagnosed it was close to 100). But, my hemoglobin is dropping (at 110 now), my IgG is up, and the total protein in the blood is getting high. My free light chains have never really been abnormal. This test became more common after my diagnosis. The first time I had the test it said it was unable to measure a ratio as my M-spike was so high. All the others were and continue to be in normal range.

I have IgG multiple myeloma. Imaging didn't show any bone issues. I have started getting more frequent infections (colds that turn into secondary infections) so that was something I struggled with prior. My only other symptom is night sweats.

[Multibilly]

Re: Partially secretory multiple myeloma - is that a thing?

by Multibilly on Sun Jan 29, 2017 12:57 am

Hi Alyssa,

A few things come to mind as I read your post.

1. Yes, a person can basically fall anywhere on the continuum between "regular" myeloma and truly non-secretory myeloma. In general, if you are registering a serum M-spike, but it appears substantially lower than what your clonal plasma cell burden might suggest, then you could have what is known as as oligosecretory myeloma.

2.You say you are getting more frequent infections. What are your IgA and IgM levels, along with their reference ranges? Oftentimes, one's "uninvolved" immunoglobulins (in your case IgA and/or IgM) can become suppressed in in a process known as immunoparesis. This in turn can lead to more frequent infections. Also, what is your IgG level at? If you take your total IgG level and subtract the serum M-spike level from it (you will first have to normalize the units of measure for the two numbers), that will leave you with the level of your normal, healthy IgG. It might be good to see if your healthy IgG level is within its normal range or if it is suppressed.

3. I'm not sure what you meant by the statement "My free light chains have never really been abnormal. This test became more common after my diagnosis. The first time I had the test it said it was unable to measure a ratio as my M-spike was so high. All the others were and continue to be in normal range." If you are talking about measuring your serum free light chain ratio, one's serum M-spike level (which in your case measures your monoclonal IgG) should have nothing to do with the ability to make a kappa/lambda free light chain ratio measurement. Also, when you talk about your free light chain levels, are you talking about serum or urine free light chain levels? Do both your serum and urine free light chain levels look relatively normal?

4. Lastly, have you recently had a bone marrow biopsy to see what your bone marrow plasma cell percentage is doing? You would likely want an updated biopsy before you started treatment, if only to know what your current cytogenetics were before selecting a specific drug regimen.

Hope this helps a bit.

[Wobbles]

Re: Partially secretory multiple myeloma - is that a thing?

by Wobbles on Sun Jan 29, 2017 6:26 pm

Hi Alyssa,

I just have a comment about your anemia, which is something that I battle. Anemia is a symptom that has various causes. It can come from lack of iron or vitamins B12 and B9 (folate). As there are blood tests for these shortages, it would be easy for your doctor to rule them out as possible causes of your anemia.

I've been tempted to attribute stray symptoms to my multiple myeloma, but we all need to be careful to rule out other potential causes.

Also, I have a comment about your night sweats. I’ve always thought that the night sweats are associated with B-cell disorders. Over the years, I’ve had a few bouts of night sweats, but I have a B-cell disorder myself in addition to my multiple myeloma.

Good luck,

Joe

[lys2012]

Re: Partially secretory multiple myeloma - is that a thing?

by lys2012 on Tue Jan 31, 2017 10:22 pm

Some good insight here. This disease is so varried. My IgG is at 40.9. I believe normal is less than 17. Sorry I don't have what the measurement is. I'm going back in March, so my doctor felt we would be able to have a better idea then of the timeline.

I've heard night sweats are not a common symptom with multiple myeloma, but it's one I've experienced with my disease. I've experienced a few other not so common issues with my disease also! Guess that makes me special. Haha.

[Spice]

Re: Partially secretory multiple myeloma - is that a thing?

by Spice on Sat Feb 18, 2017 1:48 am

I have nonsecretory myeloma, and my first symptoms were severe cramping and drenching night sweats every night. This was well before diagnosis. The first week on Revlimid, Velcade, and dexamethasone plus Zometa made them go away, and they have not returned.