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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

Should I be concerned about possible multiple myeloma?

by Jmc40ish on Wed Jul 18, 2018 9:03 pm

I recently discovered elevated calcium (10.9) and my doctor did a serum electrophoresis. Elevated beta protein (1.4) and an M-spike (0.7) were found. Next, a repeat was ordered, as well as urine and globulins. Those results showed elevations, but urine was ok. Apparently globulins all wacky elevated. (I haven't seen results yet). I've been referred now to a hematologist. Kinda freaking out. Any comment would be appreciated; I can't see the other doctor for 7-10 days. Thank you

Jmc40ish
Name: jmc
Who do you know with myeloma?: self
When were you/they diagnosed?: MGUS
Age at diagnosis: 57

Re: Should I be concerned about possible multiple myeloma?

by Multibilly on Thu Jul 19, 2018 8:34 am

Hi JMC,

Welcome to the forum, but sorry that you find yourself here.

It's not likely that you have symptomatic myeloma with a relatively small M-spike of 0.7 g/dL. But it is fairly likely that you have a condition known as MGUS. You can find lots of posts on this forum regarding MGUS. But the bottom line is that MGUS generally has a 1-2%/year risk of evolving into symptomatic myeloma. One doesn't treat MGUS and it typically doesn't cause the patient any issues. In fact, a lot of people in the world go through life with MGUS not even knowing that they have it.

But you really won't know if you have MGUS or something else until your hematologist runs some more tests, including a serum free light chain assay, etc.

Lastly, even with MGUS, it pays to work with a hematologist that specializes in myeloma. If you let us know what city you are in, folks on this forum can recommend some facilities in your area that have myeloma specialists.

Lastly, please always include the units of measure (e.g. g/dL) and the lab's reference range whenever you post a lab value.

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

Re: Should I be concerned about possible multiple myeloma?

by Jmc40ish on Thu Jul 19, 2018 9:34 pm

Hi Multibilly,

Thank you for responding. I hope to get more information soon. such delays are frustrating. I am in Seattle area.

I shared before:

Calcium (10.9 mg/dl)

Now I have results for

IgA 519 mg/dl (87-352 mg/dl)
Beta globulin 1.4 g/dl (range 0.7-1.3 g/dl)
M-spike 0.7g/dl
A;G Ratio 1.8 (range 0.7-1.7)
Albumin 4.6 g/dl (range 2.4-4.4 g/dl)

Immunofixation shows:
IgA monoclonal protein with lambda light chain

Am trying to figure out how important it will be to have a bone marrow biopsy as part of the diagnosis process.

Jmc40ish
Name: jmc
Who do you know with myeloma?: self
When were you/they diagnosed?: MGUS
Age at diagnosis: 57

Re: Should I be concerned about possible multiple myeloma?

by Multibilly on Fri Jul 20, 2018 8:09 am

Hi JMC,

The Seattle Cancer Care Alliance (SCCA) has several myeloma specialists. Dr. Edward Libby of the SCCA is a medical advisor to this forum.

Whether you get a bone marrow biopsy will be up to the hematologist and, in part, what your serum free light chain assay and other tests reveals. Not all hematologists will order a bone marrow biopsy for every case of MGUS. It sort of depends on how advanced they think your disease is and the preference of the hematologist.

When you meet with your hematologist, you should also be discussing getting your skeleton imaged. Ideally, this would be either a whole-body MRI or PET/CT or, at a minimum, a skeletal x-ray survey.

Since you have an IgA-type monoclonal gammopathy of some sort, you may also want to ask your doctor about using the new HevyLite assay in addition to the more common serum free light chain assay. The former test does a better job of tracking IgA disease than does the serum electrophoresis (M-spike) test. IgA-type monoclonal gammopathies tend to be a bit more aggressive than non-IgA gammopathies, so you should also talk about getting routinely tested every 3-6 months going forward for some period of time.

In addition to the values you listed, you should also be keeping an eye on your hemoglobin and creatinine levels.

Good luck and try not to fret too much before your next appointment. We all know that waiting on appointments and lab results is one of the hardest things about this disease.

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

Re: Should I be concerned about possible multiple myeloma?

by Jmc40ish on Fri Jul 20, 2018 2:22 pm

Thank you so much. Good questions for me, being as I know not what to ask. Although I am a retired nurse, this feels very foreign. If the hematologist does not want to do a biopsy, I think I will go to SCCA for a second opinion. I feel like like I want as much data as possible to know my picture.

I am encouraged that MGUS may be my fate, but will be prepared for any possibility. I will let you know the final diagnosis when I have one.

Thank you for the help. Much appreciated.

Jmc40ish
Name: jmc
Who do you know with myeloma?: self
When were you/they diagnosed?: MGUS
Age at diagnosis: 57

Re: Should I be concerned about possible multiple myeloma?

by Multibilly on Fri Jul 20, 2018 3:42 pm

Sounds good. Here are some other suggestions for your first appointment with the hematologist:

https://myelomabeacon.org/forum/recently-diagnosed-with-mgus-t7153.html#p42924

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

Re: Should I be concerned about possible multiple myeloma?

by Jmc40ish on Tue Jul 31, 2018 9:02 pm

Hi again,

I saw the hematologist yesterday. He ordered all the tests you mentioned and then some! I will have all my results for my appointment on August 27! He is leaning to MGUS but said IgA is tricky so he wants to have the full picture before confirming of course! To be continued.

Thanks for your help with questions to ask.

Jmc40ish
Name: jmc
Who do you know with myeloma?: self
When were you/they diagnosed?: MGUS
Age at diagnosis: 57

Re: Should I be concerned about possible multiple myeloma?

by Jmc40ish on Wed Aug 08, 2018 9:14 pm

Hi,

I have now run a series of tests from the hematologist, some being repeat tests.

IgA - 507 (85-499 mg/dl) (previous normal range: 80-350 mg/dl)

Kappa/Lambda Ratio 0.85 (0.26-1.65) Normal
Kappa - 1.31 (0.33-1.94 mg/dl) Normal
Lambda - 1.55 (0.57-2.63 mg/dl) Normal

Repeat electrophoresis all values returned to normal about 5 weeks later.

Interpretation comment: SPEP Possible faint band migrating just below the beta region. Band is too faint to quantify. Recommend immunofixation (previous lab showed IgA lambda monoclonal gammopathy).

Calcium also back in range at 10.4.

So, was it all a fluke, or is MGUS still the likely cause? I have a 24-hour light chain urine remaining and a bone marrow biopsy tomorrow, although I'm wondering if the biopsy is overkill with these new labs.

Thank you for reading.

Jmc40ish
Name: jmc
Who do you know with myeloma?: self
When were you/they diagnosed?: MGUS
Age at diagnosis: 57


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