[brenols]

Is my MGUS progressing?

by brenols on Tue Mar 28, 2017 2:33 am

Hello everyone,

Firstly, I just want to thank everyone who gives of their time and effort on this site. What an in­valuable support it is going to be and I hope to support others too on this journey.

I live in Oslo, Norway and I was diagnosed with IgA type kappa MGUS at the age of 48. 4 years ago, so have dipped in and out of this site. I was told the usual, 1% progression from MGUS to multiple myeloma, etc, and to not worry, but to get this monitored every 6 months with blood, urine, and skeletal surveys, which I have dutifully done.

As I have IgA MGUS, they now did my first bone marrow biopsy and I am now awaiting the FISH results in 2 weeks time. They said that depending on results of the biopsy, they may like to do an MRI now too as opposed to the CT scan, which showed zero bone lesions a year ago.

Can anyone make head or tail of my test results in March? It is me who looked into this free light chain ratio and read somewhere that it was very abnormal, so of course, now trying not to worry. Still says no CRAB criteria as of March.

These are my results from March 2017 which I have translated from Norwegian: sorry if there is some "Norwenglish" here. I have listed what I think are the most important ones. potassium, calcium, sodium all seemed within normal reference.

Bloodtests:

M protein IgA kappa - 11 g/l with normal immunoglobulins reduced level
IgG - 4.4
IgM - 0.3
Free kappa chains - 54
Free lambda chains - 7.2
Ratio kappa-lambda - 7.46
Leukocytes - 4.7 with normal differentiation
Normal liver tests
Hgb - 14.3
Creatinine - 56
With GFR over 90 ( whatever that means?)
Albumin - 36
Beta-2 microglobulin - 1.8
S gamma- globulin - 4.0

Urine test

Total protein/creatinine ratio 4
Albumin / creatinine ratio 0.8

The reason I am worried now is it was me who actually read somewhere that this kappa-lambda ratio was very abnormal and I am just trying to mentally prepare myself for appointment on 6th of April for the FISH results. They didn't actually say anything, just that they were hoping I still have MGUS. My initial IgA 4 years ago was 6.6 g/l, so been a slow but steady increase. Swallowing those curcumin pills. Gulp;)

I would be so grateful if someone could look at my results here. Obviously I don't have the bone marrow biopsy results yet, but is this ratio I have already pretty telling that I may have progressed to smoldering or even to multiple myeloma?

Sorry that I am worrying and 'jumping the gun' a bit here, I am just worried and have trouble getting my head round the whole thing.

Hoping for the best, that they continue monitoring every 6 months, and that I still have MGUS. Just want to feel a bit more prepared.

Thank you so much in advance for any expert advice. I am afraid I know a lot more than I did 4 years ago, but it is still confusing and scary.

Kind regards,
Brenda

[Multibilly]

Re: Is my MGUS progressing?

by Multibilly on Tue Mar 28, 2017 9:01 am

Hi Brenols,

Welcome to the forum

A few things to note from your comments:

1. While your kappa/lambda ratio is out of range, a ratio of 7.46 seems perfectly consistent with a diagnosis of MGUS. One starts to get worried when that level rises a lot and consistently over time and approaches 100 (a myeloma defining event).

2. You also ask if you are progressing. I might suggest that you go back and look at your earlier kappa, lambda and ratio numbers and compare them to your latest numbers. In fact, I would also do this for your M-spike, IgA, IgG, creatinine and calcium numbers (and also your bone marrow plasma cell percentage when you get those new results). Comparing (graphing) your key numbers over time is really the only way to tell if your are "progressing".

3. M-protein (m-spike) measurements of IgA tend to be inaccurate for reasons I won't go into here. I would therefore also encourage you to look at your total IgA level and not just your IgA M-protein level to help track the level of monoclonal IgA in your system. You might also ask your oncologist about running the new "Hevylite" assay, which is a very good test for tracking patients with IgA-type monoclonal gammopathies.

4. You didn't include the normal reference ranges and units of measure, but your IgG appears to be suppressed at a level of 4.4 (440 mg/dL), depending on what your normal range is. This may suggest immunoparesis, which is the suppression of one or more uninvolved immuno­globulins (in your case, your IgG). Immunoparesis is more common in IgA type MGUS patients and is a risk factor for progression from MGUS to multiple myeloma.

Hope this helps a bit.

[brenols]

Re: Is my MGUS progressing?

by brenols on Wed Mar 29, 2017 9:36 am

Thank you so much Multibilly.

Yes, this ratio I had was 7.46, even thought the kappa number was 'only' 54. But I am sure I have read that a ratio of over 8 is very abnormal. I'm not far off, so this concerns me.

Also, the hospital wanted a re-run of the blood tests and in just 13 days my S-Albumin level went from 38 (3.8g/dl) to 36 (3.6g/dl). This worries me too.

I am trying not to worry, but they gave me 5 long weeks from my bone marrow biopsy to wait for the FISH results. My appointment is in a week and I promised myself that I would just get on with my life and not think about it until the week preceding the appointment. But every time now I see igA, then abnormal FLC ratio, now this S-Albumin and, yes, it's noted that there is suppressed uninvolved immunoglobulins in addition, so concerns me as values do seem to be creeping in the wrong direction. First time I've had a bone marrow biopsy or seen a hematologist in these 4 years. That's why I feel a need to be really 'up' on this, as they seem a bit laid back for something here!

[Multibilly]

Re: Is my MGUS progressing?

by Multibilly on Wed Mar 29, 2017 10:18 am

Hi Brenols,

Regarding your bone marrow biopsy, if this is the first one you've had and you have nothing to compare it to, then it is not going to give you any insight into whether you are progressing or not.

However, note that you can usually get your bone marrow plasma cell percentage (BMPC) back in a number of days and this will give you a rough idea of what kind of disease burden you are dealing with. So, you may want to ask your hematologist if he / she has that number yet. In any case, your current, relatively low M-spike doesn't suggest that you will have a very high BMPC, so I wouldn't stress over waiting for that result – especially since you have nothing to compare it to.

FISH testing simply tells you if you have any adverse genetic mutations that may impact your prognosis (should you develop symptomatic multiple myeloma) and / or your risk of progression. But FISH testing won't tell you anything about your disease burden and it takes longer to run that test than the BMPC analysis. But there must be a backlog for doing the FISH analysis if they are saying it will take 5 weeks to complete.

[brenols]

Re: Is my MGUS progressing?

by brenols on Wed Mar 29, 2017 12:50 pm

Thanks again Multibilly. You are a gem:) Yes, the hematologist apologised and said that there was a backlog, poor resources, etc, and that's why she made the appointment for 5 weeks.

Anyway, I keep educating myself. It's a lot to get your head around. I'll know more in 1 week and depending on the results from the biopsy, they may want a MRI. So hoping I still have MGUS,:)