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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Is my MGUS now multiple myeloma?

by Cami Reis on Wed Sep 30, 2015 11:00 am

I need your help to understand the result of these new tests. My first tests I was diagnosed with MGUS. I'm Brazilian and my English isn't very good. I ask for your understanding.

Do I still have MGUS or is it multiple myeloma? Is this value of kappa / lambda ratio of 15.58 serious?

Here are the values from May and below from September.

I don't have any symptoms but even so the doctor ordered a biopsy, bone marrow examination and myelogram. They are scheduled for October.

I've always had good health, health care, do gymnastics etc. It all started with a sciatica and a synovial cyst is calcified lumbar L3-L4 in. I was operated on, it was benign and all went well. I don't feel anything.

After the surgery I had herpes zoster in my face which also recovered well after a week of medicine.

When my gynecologist in a routine examination ordered the electrophoresis I received the result of IgG monoclonal gammopathy. Is this serious? Is there anything I can do to change that? On the basis of the first and the current results, is there a worsening of the situation?

Em May 15, 2015, o resultado dos 1º exams foram:

Protein Electrophoresis

Immunology A IgA 218 mg/dl 40 to 350
Immunology G IgG 1055 mg/d 650 to 1600
Immunology M IgM 103 mg/dl 50 to 300

Immunology, light chains in urine

Kappa chain mg/dl = less than 6.6
Lambda chain mg/dl = less than 3.6

Immunofixation of Proteins – Monoclonal Characterization

Serum Anti-IgA - No qualitative changes
Serum Anti-IgG - Presence of monoclonal band
Serum Anti-IgM - Qualitative changes
Serum Anti-Kappa chains – Presence of monoclonal band
Serum Anti-Lambda chains – Without qualitative changes

Urinalysis-normal

Waaler-Rose, Negative Reaction
Antinuclear antibodies and cytoplasmic antigens-ANA
Substrate: HEp-2 Cells
Positive result
Titration 320-160
Nucleo finely granular
Negative Nucleolos
Mitosis Negative
Negative Ctipoplasma
nADNdsADN BC. IgG negative


Now, 4 months later, I got the new results for which I request your help to understand. I'm worried about the K/L ratio of 15.58.

All other exams seem to be within the reference values. Even though the immunoglobulins IgG have increased, they are still within the reference values.

What are the chances increase? Is there anything I can do to change that? In parentheses are reference values only.

Total Proteins 6.9 g/dl (4 a 60 years = 6.8 to 8.3)
Albumina 4.2 g/dl (3.2 a 5.2)
Beta-2-Microglobulina- BMG – 1.5 mg/L (1M to 70 years - until 2.1)
Immunology A – IgA 211 mg/dl (>12 years = 40 to 350)
Immunology G – IgG 1190 mg/dl (>6 years = 650 to 1600)
Immunology M – IgM 94 mg/dl (>12 years = 50 to 300)
Calcio Total 2.31 mmol/L (2.15 a 2.55)

Immunology light chains
Chains Kappa 18.7 mg/L (3.3 to 19.4)
Chains Lambda 1.2 mg/L (5.7 to 26.3)
Ratio K/L 15.58 (0.26 to 1.65)

Urina
Cadeias Leves Livres na Urina
Kappa 13.6 mg/L (1.4 a 24.2)
Lambda <0.2 mg/L (0.2 a 6.7)

Factor reumatoide <9,3 KUI/L (até 14,5)
W:Rose, Reação: Negativo
Complemento C3 107 mg/L (90 a 180)
Complemento C4 34.3 mg/L (10,0 a 40,0)

Anticorpos Anti-nucleares e Citoplasmatico ANA
Celulas Hep-2
Resultado positivo
Ttitulação 160 (>15 anos - <160)
Nucleo finamente granular
Nucléolos Negativos
Citoplasma Positivo granular
Mitoses Negativo

Virus Varicela Zoster – VZV,Ac.IgG >5000 UA/mL (Negativo <80 e Positivo>110)
Virus Varicela Zoster – VZV,Ac.IgM 7 UA/mL (<20)
Herpes Simplex I, Ac. IgG 194 UA/mL (<20)
Herpes Simplex I, Ac. IgM 3 UA/mL (<20)
Herpes Simplex II, Ac.IgG 7 UA/mL (<20)
Herpes Simplex II, Ac.IgM 2 UA/mL (<20)


Sorry about my questions. I'm afraid. ;(
Cami

Cami Reis

Re: Is my MGUS now multiple myeloma?

by Multibilly on Thu Oct 01, 2015 1:54 pm

Hi Cami Reis,

The difference between MGUS and symptomatic multiple myeloma is pretty big and is based on whether or not you have any organ damage as defined by the "CRAB" criteria , or if you meet any of the new "SLiM" criteria. These criteria are:

*Active Myeloma (one or more CRAB features)
C – calcium elevation (> 10 mg/dL)
R – renal dysfunction (creatinine > 2 mg/dL or creatinine clearance <40 ml/min)
A – anemia (hemoglobin < 10 g/dL or > 2g/dL decrease from patient’s normal)
B – bone disease (one or more osteolytic lesions detected on skeletal radiography, MRI or PET/CT)

*Early Active Myeloma (one or more SLiM features)
- > 60% bone marrow plasma cells (your bone marrow biopsy will tell you this)
- Serum Free light chain ratio >100
- >1 MRI focal lesion (an MRI or PET/CT will tell you this)

In general, the most important things you want to be looking at are the serum free light chain values, your serum M-spike (this would show up as a number that may be listed as "abnormal band", "paraprotein", "monoclonal protein" etc on your serum electrophoresis test), as well as your calcium, hemoglobin and creatinine levels.

A low serum lambda, normal kappa, and a high kappa/lambda ratio from your immunology light chain test results above can mean there is some bone marrow suppression going on, so it's good that your doc is following up with a bone marrow biopsy - you might want to discuss this further with him/her.

http://www.thebindingsite.com/interpretation-of-freelite-results

I'm not a doctor, but I would also be asking for a whole-body PET/CT or whole-body MRI to see if there is any bone damage anywhere in your body (the "B" in the CRAB critiera), not just a myelogram.

Hope this helps. Let us know if you have any questions.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Is my MGUS now multiple myeloma?

by Cami Reis on Fri Oct 02, 2015 4:28 am

Thanks, Multibilly.

I'm confused, and I ask you to help me understand better. I read the documents indicated but I still have doubts. I don't have any symptoms. My questions are:

  1. For my results which the value of the M-spike?
  2. What do you mean here is some bone marrow suppression going on? Is there anything I can do to change it for the better? Is there any alternative treatment?
  3. Herpes zoster may be influencing the results?
  4. I'm with cancer? How long can I have?
I'm afraid and scared.

I feel good but since the result that don't do anything except read and try to understand why this happened to me.

I have MGUS yet? Or by new results is no longer MGUS?

Forgive me ... I am a simple person and all this is affecting me a lot. I live out of my country and I'm worried.

Have you ever heard of autohemotherapy? And about low dose naltrexone?

I look forward to a reply.).

That God bless this forum

Cami Reis

Re: Is my MGUS now multiple myeloma?

by Multibilly on Fri Oct 02, 2015 8:03 am

Hi Cami Reis,

First, try not to worry too much about this. Folks don't just go from MGUS to symptomatic multiple myeloma overnight. Nothing in your numbers that you shared so far suggests that you have symptomatic multiple myeloma or have progressed beyond MGUS. Your kappa/lambda ratio is only 15. One starts to worry when that ratio gets up to 100 or so.

1) For my results which the value of the M-Spike? MB: It isn't listed here. You need to look around on your serum electrophoresis test results for something labeled as "abnormal band", "M-protein", "monoclonal protein", "paraprotein", etc. It may be in a separate notation on the lab results. Note that it also isn't always posted on online lab results, so you may have to ask your doc for this number or get a copy of the original lab report. Also, given your IgG (this happens to be your "involved" immunoglobulin) level is normal, you may not even have an M-spike or it may be very small.

Not to confuse and complicate the issue, but the values that you list under your electrophesis test results (IgA, IgM, IgG) are not serum electrophoresis results. These are the results from a test known as "quantified immunoglobulins" (they may call it something else in Brazil).

2) What do you mean here is some bone marrow suppression going on? Is there anything I can do to change it for the better? Is there any alternative treatment? MB: First, bone marrow suppression is only a "possibility" that is suggested by your kappa and lambda numbers. Your doctor needs to confirm this. Bone marrow suppression means that your bone marrow may not be producing as many of the normal red and white blood cells that help your blood deliver oxygen, fight off infection, etc. Your doctor is best suited to confirm this and to tell you if there is anything to do about it.

3) Herpes Zoster may be influencing the results?MB: Viral infections like herpes zoster can impact one's immune system. But again, your doctor really needs to comment on this.

4) I'm with cancer? How long can I have? MB: MGUS isn't considered to be cancer. Only the later stages such as smoldering multiple myeloma and symptomatic multiple myeloma are considered to be cancer.

I realize you are worried and I've been there. But you are really jumping to worst case conclusions that aren't justified based on the results you posted here. The risk of MGUS progressing to multiple myeloma is only about 1% a year. And if patients do progress, they almost always first go from MGUS to smoldering multiple myeloma (which is typically a "non-event", requires no treatment and only has a risk of about 10%/year of progressing to multiple myeloma in the first 3-5 years and then the risk goes down from there). Even if one does have a diagnosis of symptomatic multiple myeloma, the treatments today are quite remarkable and getting better every few months - and many of these patients go on to lead pretty normal lives.

It's good your doctor is monitoring you and is being thorough with his follow up tests. I know it's hard, but you really need to wait till you get your next test results before worrying too much about all this.

In the meantime, I would not personally suggest looking at alternative therapies like the ones you mentioned. Just have a good diet (including feijoada...yum!), exercise and enjoy life....and trust your doctor.

Take care.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Is my MGUS now multiple myeloma?

by Cami Reis on Fri Oct 02, 2015 10:10 am

Hi, Multiply.
That God bless you for the attention with which you answer us.
I'll follow your advice and try not to suffer that much in advance.
By the way two more questions:
1) make the biposia of bone marrow and the myelogram cause pain?
I started talking about this with my husband. He gets nervous and blames me for making a lot of exams that he thinks just makes me nervous.
I'm glad to have people like you in the forum who understand the situation.
I'm Brazilian, from Rio de Janeiro but lived in Lisbon for 18 years.
Thank you for everything.
If one day you come to Lisbon we will welcome you and your family.
Let's get talking because I'm still going to ask more questions.
And take care of yourself too.
I'm going to do the whole body RX (9 films) for analysis like um sugest .
Cami,.

Cami Reis

Re: Is my MGUS now multiple myeloma?

by Multibilly on Fri Oct 02, 2015 12:15 pm

Regarding pain from these procedures, I can only speak about my experience with a bone marrow biopsy. I did it with just a local anesthetic, thought it was easy and I drove myself home an hour later. I have had more pain having my teeth cleaned. But be clear that not everyone shared my experience. See this post.

https://myelomabeacon.org/forum/bone-marrow-biopsies-am-i-a-wuss-t2629.html

The bottom line is that the tests will be over fairly quickly, so I would also try not to worry about these tests either. The benefits of understanding where your condition truly is by having these tests done outweighs any temporary pain you might experience. Getting a full set of tests now and then makes a lot of sense with this disease.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012


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