[Nats312]

Is it really MGUS?

by Nats312 on Thu Oct 26, 2017 1:59 pm

Hi,

I'm confused by my results and conflicting information.

I was recently discovered to have an IgG lambda paraprotein of 11 g/l (1.1 g/dL). Not very high. No free light chain testing was done, but today a bone marrow biopsy was performed and initial report is 10-12% of plasma cells infiltration.

I also have low white blood count of 2.8 and neutropenia and low monocytes.

I saw a haematologist today who said this is MGUS, but I’m unsure with other things I have read if this to be correct.

I am a 45-year-old female in the UK.

I also had PET/CT, which only found small focal uptake in paranasal region.

Had a skeletal survey done today (awaiting results). Having MRI next week.

I have very bad lower back pain, night sweats, weight loss, chronic diarrhea, and also a raised CA125.

Is it really possible to say at this point whether this is really MGUS?

(In case it's relevant, I'll add that I'm a 45-year-old female living in the UK.)

[TerryH]

Re: Is it really MGUS?

by TerryH on Mon Oct 30, 2017 11:10 pm

Hi Natalie,

Welcome to the forum.

I believe the key result that you've gotten so far is the bone marrow biopsy result reporting a 10-12% plasma cell infiltration.

The cutoff between MGUS and smoldering multiple myeloma is a clonal plasma cell infiltration of 10 percent.

The result you reported, however, appears to be the total plasma cell percentage, which includes both monoclonal ("clonal") and polyclonal plasma cells. (Clonal plasma cells = mutated, non-normal plasma cells; polyclonal plasma cells are normal plasma cells.)

Given that the normal plasma cell percentage in healthy people is about 2, 3, or 4 percent , it would seems that your clonal plasma cell percentage is right around the 10 percent cutoff between MGUS and smoldering myeloma. It may be a bit less, or it could be a bit more.

You should inquire to find out what the clonal percentage is. Your doctor may need to interpret the biopsy report for you to give you the clonal percentage.

There's another technical issue that you and your doctor will need to consider, which is that bone marrow biopsies may report two percentages, one from the aspirate sample, and one from the core sample. If the two percentages are not the same, the higher of the two is the one that should be used for the diagnosis. See this forum thread for a bit more information:

https://myelomabeacon.org/forum/what-is-the-correct-plasma-cell-percentage-to-use-t5894.html

Good luck, and let us know what you find out as you go forward.

[Nats312]

Re: Is it really MGUS?

by Nats312 on Thu Nov 02, 2017 8:47 am

Thank you Terry for your welcome.

Just got back from the haematologist and it turns out I am a medical enigma! Always knew that. Although my bone marrow infiltration is only 10-12% of total cellularity apparently (as you said, the aspirate was less), with all my symptoms they are now thinking I may have amyloidosis and are referring me to the national amyloidosis centre for a second opinion.

They said if that drew no answers along with the biopsy they need to perform in my nasal region (showed up hot spot on PET/CT; may be an extramedullary plasmacytoma), then they are thinking they may want to start treatment as there were other pointers in the CD immunology markers. Plus I get repeated infections (have one at moment in my legs), had shingles a couple of months ago, etc. The doctor said he was willing to put it as myeloma and not MGUS.

I’m somewhat perplexed and knocked for six as I've gone from MGUS to smoldering to active myeloma in the space of a week.