[grey girl]

Have CLL, wondering if I have MGUS (or more)

by grey girl on Sun Sep 11, 2016 6:25 am

Hi,

I have chronic lympho­cytic leukemia (CLL) with normal CMP but have had tests to see if I have MGUS or more. My serum immunofixation says IgM kappa mono­clonal band present, no mono­clonal proteins detected, no M spike detected. Interpretation: Consistent with hypo­gamma­globulinemia.

Here`s the catch:

Kappa light chain 151.4,
lambda light chain 3.1,
kappa/lambda ratio 48.54,

24-hour urine:
Protein 144
Protein / creatinine ratio 172,
Creatinine 0.83,

Electrophoresis U:
Albumin 100%
Alpha 1, alpha 2 beta, gamma all 0%
Abnormal protein band 1: No M spike
Interpretation: No abnormal spike peaks detected.

Since my oncologists hasn`t called me about these findings, I`m left to wonder if I am headed for MGUS, smoldering MGUS, Waldenström macroglobulinemia, or smoldering multiple myeloma. He had said after these tests I would have to have a bone marrow test, which hasn`t happened yet.

On CBC, my platelets are 95.000, 17.1 RDW, abs neutrophils 0.4, all immunoglobulins low.

Has anyone else experienced abnormal light chains but no spikes in blood or urine but a IgM kappa monoclonal band.

Thanks ahead.

[Multibilly]

Re: Have CLL, wondering if I have MGUS (or more)

by Multibilly on Sun Sep 11, 2016 2:12 pm

Hi Grey Girl,

I'm not a doc and I'm certainly not well versed about CLL, but I believe that some of your lab results can be explained by CLL. As an example, I believe it is pretty common to have an abnormal free light chain (FLC) ratio and to also detect heavy chain M-proteins in CLL patients.

But in your case, it seems that you have just enough IgM M-protein to register on an immuno­fixation test (which is a very sensitive test), but not enough to measure via serum electro­phoresis. However, these kinds of serum immunofixation / SPEP results can in fact be ex­plained by hypo­gamma­globulinemia (as noted on your test results). It is my understanding that hypogammaglobulinemia is not the uncommon in CLL patients. Since hypo­gamma­globu­li­nemia can suppress some or all of your immunogloboulin levels, the first thing I would be checking are your IgG, IgA, and IgM levels. How are they doing?

Also, given your fairly high kappa free light chain level, I am a little surprised that you don't register a urine M-spike (aka Bence Jones proteins, or monoclonal free light chains). This suggests to me that your excess free light chains might be polyclonal (non-cancerous) in nature and may not be due to some sort of monoclonal gammopathy.

I'm therefore thinking that a bone marrow biopsy test will be the key in letting you know if some­thing like MGUS may be causing these readings, or if these readings are all simply due to the CLL or some other accompanying condition.

I'm kind of guessing about all this, so please verify all this with your doctor.

[grey girl]

Re: Have CLL, wondering if I have MGUS (or more)

by grey girl on Sun Sep 11, 2016 2:27 pm

Thanks for input. My immunoglobulins are all low. I am concerned that the M-spike could eventually show up. I see my oncologist next week and I'm sure he will call for a bone marrow biopsy. I feel I have Waldenstrom's or lymphoma at this point. But we will see, for I never had an IgM show up, or an abnormal protein band, until I had my first chemo treatment.

I realized that I forgot to add that although alpha, beta, gamma, etc. on urine was 0%, on the serum immunofixation report, alpha 1 is 0.4 H, and alpha 2 N beta1 N, but gammaglobulin is low 0.3.

Thanks again.

[Wobbles]

Re: Have CLL, wondering if I have MGUS (or more)

by Wobbles on Thu Sep 15, 2016 3:18 pm

Hi grey girl,

I started to develop a series of blood disorders more than ten years prior to my MGUS switch­ing over to active myeloma. This included lymphoproilferative disorders (clonal expansions in both T and B lymphocytes; one was recently diagnosed as hairy cell leukaemia). I also had neutropenia, anemia, and lowered immunoglobulins, except for IgA, which was elevated due to M proteins.

It is good that you are getting a bone marrow biopsy. That should clarify your situation. I think the key is to make sure you continue to get monitored for all the possible evolutions of blood disorders that may affect you. They seem to evolve in time and reappear in different forms.

I can also suggest making the effort to become as knowledgeable as possible about blood dis­orders in general. Judging from your post, you are already a good way on this path.

Good luck on your journey.

Wobbles

[grey girl]

Re: Have CLL, wondering if I have MGUS (or more)

by grey girl on Fri Sep 16, 2016 9:42 pm

Thanks Wobbles.

What I have found interesting is l found out that rituximab which l had is created from a myeloma cell! Originally when l had researched it two years ago, it never said it was this type of cell. It makes me wonder that of all the immunoglobulins there are it happened to be an lgM for me. I wonder how many people who took rituximab eventually went on to get multiple myeloma. Just a thought.

I have blood cancer on both sides of my family, plus some autoimmune issues. So far, of 9 members of my immediate family, six had cancer. So l don't think too far ahead because of this. I'm 59 and the only one of my family who made it past 56, with leukemia.

Well, so long for now. I'll let you all know what's up, hopefully I get to stay in the CLL file for awhile. Hey, I'm a poet and don't know it. Do my feet show it? They're Longfellows!