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

Initial low M-spike gone one month later (no treatment)

by Gill1961 on Mon Jan 09, 2017 5:00 pm

My GP ordered serum protein electrophoresis (SPEP) testing due to me having tingling in my hands and feet one month ago. This test came back with results of a 0.3 g/dl (3 g/l) M-spike. The protein was identified as IgM lambda.

My GP referred me to a hematologist-oncologist who also ordered the same tests and more last week (30 days from the original testing). This blood test came back stating that no abnormal protein bands were detected this time. The hematologist also did light chain testing, sed rate and viscosity testing, and all the results were normal. What does this mean now for me?

Can different labs get different results? At my initial consultation last week, the hematologist also ordered a bone marrow biopsy and a PET scan. My insurance company would not approve the PET scan, but the bone marrow biopsy is still scheduled in a few days.

I'm not sure what to do now. Do I have an M-spike or not that needs to be monitored in the future?

Gill1961

Re: Initial low M-spike gone one month later (no treatment)

by Mark Pouley on Mon Jan 09, 2017 7:09 pm

I'm not a doctor and I don't have as much knowledge as many others here, but I would think two things

  1. You should go through with the biopsy because that test is more sensitive and will give you information the other tests won't
  2. If the protein level is very low, you may be looking at MGUS or smoldering myeloma, which will still need to be monitored and possibly treated at some point.
It is good news that the levels are low or even normal, but you should be seeing a myeloma specialist at this point and exclude any issues that require treatment.

Good luck to you. Hopefully the results of all the testing continues to show an anomaly and that you are in good health.

Mark Pouley
Name: Mark
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2015
Age at diagnosis: 53

Re: Initial low M-spike gone one month later (no treatment)

by Multibilly on Mon Jan 09, 2017 8:24 pm

I agree with Mark. Given the tingling in your hands and the fact that you tested positive once for IgM-lambda m-protein, I would follow through with the bone marrow biopsy and I would hook up with a myeloma specialist that lives and breathes this stuff on a daily basis. I would also make sure that they run a Congo red stain test when they run the biopsy tests to help rule out amyloidosis.

In general, there are some special considerations to look out for with IgM m-protein disorders that are covered in this excellent article:

http://www.hematology.org/Thehematologist/Ask/3186.aspx

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

Re: Initial low M-spike gone one month later (no treatment)

by TerryH on Mon Jan 09, 2017 8:42 pm

Hi Gill,

Did you also have a serum immunofixation test the second time around, and did it come back showing no signs of a monoclonal protein (aka paraprotein, M-protein, abnormal protein, etc.)?

Also, was the light chain testing you had done during the second round of testing *serum* (blood) free light chain testing?

To be honest, I'm not as convinced as Mark and Multibilly that a bone marrow biopsy is necessary at this time. I wonder if waiting another month and doing another round of blood tests is enough at this time. Even if you do have some sort of monoclonal gammopathy, it's clearly not extensive enough to generate a lot of monoclonal immunoglobulins or free light chains.

Note that it is possible for someone who is otherwise healthy to have transient, very low levels of monoclonal protein in their blood. And the M-spike level in your first round of testing was quite low.

See, for example, the case documented in this forum thread,

https://myelomabeacon.org/forum/false-positive-mgus-t3921.html

and the comments in the thread by Dr. Cohen.

Also, this paper discusses a series of transient cases of monoclonal gammopathy in an extended series of patients seen at a hospital in Ohio:

Transient Paraproteinemia: An Intriguing Immunological Anomaly, Annals of Clinical and Laboratory Science, Summer 2003
http://www.annclinlabsci.org/content/33/3/265.long

TerryH

Re: Initial low M-spike gone one month later (no treatment)

by Multibilly on Mon Jan 09, 2017 8:58 pm

Hey Terry,

While I tend to agree with you, I would grab the opportunity for a biopsy if insurance has approved it and the hematologist thinks his/her findings merited ordering one.

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

Re: Initial low M-spike gone one month later (no treatment)

by TerryH on Mon Jan 09, 2017 9:16 pm

Thanks, Multibilly.

I guess I feel it's almost unethical to cost the healthcare system $5,000-$10,000 for a biopsy and lab tests when a cheap set of blood tests in one month will determine more conclusively whether such a multi-thousand dollar expense is warranted.

I can't imagine Gill's insurance not covering a biopsy in a month if a third round of testing shows that there is a monoclonal gammopathy present once again. And if the gammopathy isn't present, then that's fairly conclusive evidence the gammopathy was transient. Plus, subsequent tests to check check for a reemergence of the gammopathy could be ordered.

There's also the issue that biopsies can be painful for some people, there is a risk of infection with them, and biopsies can come up negative even if there is a plasma cell disorder due to the "patchiness" of such diseases.

I guess I just find the rush to do a biopsy hard to understand when we're talking about a tiny M-spike of 0.3 g/dL that was seen once in two sets of tests. There's apparently no anemia, no hypercalcemia, no kidney damage, and no signs of bone damage. The only symptom of any disorder is tingling in the hands and feet, which could be due to causes other than a monoclonal gammopathy, such as a vitamin deficiency or an autoimmune disorder.

(I'll step down from my podium now. Thanks for bearing with me! ;) )

TerryH

Re: Initial low M-spike gone one month later (no treatment)

by Mark Pouley on Mon Jan 09, 2017 10:56 pm

I don't have the knowledge that others here have. In my post I'm not necessarily advocating for a biopsy, but advocating for following up. I especially encourage seeing a myeloma specialist.

Mark Pouley
Name: Mark
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2015
Age at diagnosis: 53

Re: Initial low M-spike gone one month later (no treatment)

by Gill1961 on Tue Jan 10, 2017 4:07 pm

Thank you all for the thoughtful and knowledgeable comments around my question. The different opinions expressed by all of you is exactly what has been floating around my head. Do I use healthcare resources or not? Do I wait?

I did have both a serum immunofixation test and a serum free light chain on the second round of blood testing. Both of these tests were normal.

I was able to speak with my hematologist/oncologist today and he has now obtained approval for me to have a PET scan and a BMB this week even after review of the new blood work. He feels that with some of my other symptoms, i.e. lightheadedness, shoulder and right upper quadrant pain, along with the tingling in my hands and feet, that further testing is warranted at this time. Additionally, since an IgM M-protein, although small, was discovered at the first blood test, he feels that this also strengthens the argument for further review now.

This forum has been so helpful in understanding this complex condition. I am so impressed with the knowledge of so many of the posters. I have found a great resource to help me understand what the doctors are looking for and what I need to be looking for.

Depending on what we find out, I'll seek out a myeloma specialist for a second opinion as all of you have recommended. I live in Indianapolis, IN and think that we have a few myeloma specialists here in the city.

Gill1961

Re: Initial low M-spike gone one month later (no treatment)

by TerryH on Sat Jan 14, 2017 12:56 pm

Hi Gill,

I just saw your post. Thanks for the update. And, yes, there are several myeloma specialists in the Indianapolis area. Indiana University's School of Medicine has at least two, if I recall correctly.

Please keep us posted on what you find out, and good luck finding out what is at the root of your medical issues.

TerryH


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