[EoinDubh]

MGUS testing once every year: is that frequent enough?

by EoinDubh on Sat Jan 27, 2018 1:51 pm

I was diagnosed with MGUS 2 weeks ago. Last May I had a blackout and hit the floor pretty hard (broke my nose, snapped off a tooth, wrenched my left knee, broke 2 toes and got 3 slashes on my right arm) and spent 20 hours in the emergency room. The final diagnosis was "We do not know what happened. It is an anomaly."

I had a scheduled appointment with my neurologist at the VA about my peripheral neuropathy and mentioned the fall to him. He ordered up cranial and spinal MRIs. After looking at the pictures he noticed spots on my L2 and L5 vertebrae so he ordered a bone scan to get more info. The bone scan showed nothing there, so he said it was an error on the MRI.

I got copies of the MRIs and bone scan and took them to my GP and he took them to an on­colo­gist and a hematologist who both said that it could be myeloma as that would not show on a bone scan. The readings from the blood test in July 2017 that they took was:

Test Ref Range & Units Result
IgG 600 - 1,600 mg/dL 1,140
IgA 40 - 375 mg/dL 248
IgM/Plas 30 - 190 mg/dL 775

My GP and the doctors he consulted (all at Kaiser) said it was not a big deal, but when I went back to the VA with the results, they decided to do a bone marrow biopsy and test for myeloma. The result was a diagnosis of MGUS. (I also have discussed my case in this forum thread.)

The VA wants me to come in annually to have another MRI and blood test.

Is this a reasonable length of time between tests?

I am somewhat leery because the VA followed me for 10 years for prostate issues by using the PSA level. I was diagnosed with prostate cancer in March 2015 and when they operated they found that it was stage 4 and had migrated to the bladder and nerves in the area. But the PSA on the day of the operation was only 3.5 and they do not worry about it until it hits 5.0. The VA has given me a 100% disability because it was presumptive for Agent Orange exposure in Vietnam. I am worried that the MGUS might be of a similar cause.

[TerryH]

Re: MGUS testing once every year: is that frequent enough?

by TerryH on Sat Jan 27, 2018 4:20 pm

I think the answer to your question depends a little on what happened with your lab results between last July and now.

I assume that either your GP, the oncologist he consulted, or the folks at the VA did some bloodwork on you last month or this month, such as new quantitative immunoglobulins (IgA, IgG, and IgM), an SPEP (which would have your M-spike), and perhaps serum free light chain testing. Did they? What were the results?

Also, did you have your M-spike measured last July and, if so, what was it? Did you have any serum free light chain testing and, if so, what were the results?

If your labs were relatively constant between July and your most recent tests, then it is not unreasonable to wait a year for your next checkup. If there were some changes suggesting your disease might be progressing, you might want to ask for a follow-up in 6 months, rather than a year.

Note that the article that Multibilly mentioned in your earlier thread,

J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein", The Hematologist, Sep 15, 2014 (full text of article)

recommends testing every six months. However, you'll find other sources that recommend testing anywhere from once a year to once every 2-3 years, except if there are symptoms suggesting the disease is progressing. This is for testing after an initial follow-up six months following the first set of labs indicating that someone has MGUS.

For example, the International Myeloma Working Group (IMWG) consensus guidelines for monitoring MGUS say "Patients should be followed with serum protein electrophoresis at six months and, if stable, can be followed every 2–3 years or when symptoms suggestive of a plasma cell malignancy arise." See:

Kyle, RA, et al, "Monoclonal gammopathy of undetermined significance (MGUS) and smoldering (asymptomatic) multiple myeloma: IMWG consensus perspectives risk factors for progression and guidelines for monitoring and management," Leukemia, April 2010 (full text of article)

[EoinDubh]

Re: MGUS testing once every year: is that frequent enough?

by EoinDubh on Mon Jan 29, 2018 7:01 pm

I think that some of my confusion was that the VA was giving me a reading of 0.65 g/dl and Kaiser was giving me a reading of 775 mg/dl. The Kaiser reading from December is up to 796 mg/dl. The VA is suggesting rechecks at 6 month intervals, while Kaiser says once a year.

I think that given my past experience with Kaiser and PSA readings that were still normal when an MRI picked up an issue with the prostate which turned out to be stage 4, I will go with the VA idea for now.