[PDJC]

Just Diagnosed MGUS, now what

by PDJC on Thu Jul 25, 2013 2:41 am

As a result of routine bloodwork for an insurance policy, I was alerted to abnormal globulin levels, and went to my doctor to get further tests, which came back a few weeks ago indicating MGUS with electrophoresis showing a discrete protein band in the mid-gamma region with 1.7 g/dL, and immunofixation shwoing a G heavy chain and kappa light chain monoclonal band. I was referred to a haemotologist who ordered additional bloodwork, and I am scheduled for skeletal survey tomorrow. He has indicated a monitoring cycle every 3 months for a year, so I am now awaiting these results and spending a fair amount of time wondering about what to make of it. Both my doctor and specialist have encouraged me to return to life as normal and not to dwell on it or spend too much time worrying, but I am finding that to be hard to do. I have read that <1.5 g/dL is very low risk, and that >1.5 g/dL with any other marker could be higher risk, and I am wondering if being relatively young (or at least I still think so) at 50, if that means that I am at higher risk simply by virtue of having been diagnosed early. Concerned and curious to know what to make of it.

[Dianem]

Re: Just Diagnosed MGUS, now what

by Dianem on Thu Jul 25, 2013 8:23 pm

Hi Patrick - like you I was diagnosed with MGUS following a routine blood test the fall of 2011. My M spike was 1.5 and was referred to an oncologist who ordered: another blood test, bone scans, 24 hour urine testing, and a bone marrow aspiration (BMA). I was very concerned, couldn't stop reading, and obsessing on MGUS until the results came back. My oncologist feels a spike of 1.5 or higher warrants a BMA, but said my IgG MGUS tends to run higher than other variants of MGUS and varies/sample. She also said MGUS is symptomless and to continue doing normal activities/exercise. Appears the spike, percent abnormal cells in the marrow, and genetic profile help predict your risk of progression. Next week I'm going in for my 6-8 month blood check and so far the spike has stayed the same. Sounds like you are IgG MGUS too? Very hard not to dwell on what MGUS can mean, but keep thinking 1% of MGUS population progress/year. If you get a BMA, they will inform you of your risk for progression. Take care, Diane

[PatrickC]

Re: Just Diagnosed MGUS, now what

by PatrickC on Wed Jul 31, 2013 1:46 am

Thanks Diane. Sounds like you have had a similar experience, and the advice is helpful. I have settled down a bit over the past week. I am starting to get some more results back now; no free light chains, and relatively low levels of IgG K. However there is suppression of immunoglobulins, and I have high ferritin levels, now awaiting radiologists report on skeletal survey, and beta 2 microglobulin levels. Not totally out of the woods, but I think I see a clearing. I am trying to get back to normal and manage my obsession with researching every aspect of MGUS, which my Haemotologist has noted that he suspects, but will not confirm until all of the results are in. Guess thats why they say that patience is a virtue.

Cheers

[Dianem]

Re: Just Diagnosed MGUS, now what

by Dianem on Wed Jul 31, 2013 5:47 pm

Hi Patrick - glad your results are coming back. Yes, I too started reading all those articles on MGUS, spikes, and risk progression. You had mentioned reading a spike over 1.5 is high risk - I must have read that too and my doctor said the Ig range spike of 1.5-2.00 is considered standard risk. Good luck, Diane

[Dr. Ken Shain]

Re: Just Diagnosed MGUS, now what

by Dr. Ken Shain on Thu Aug 01, 2013 2:12 pm

A new diagnosis of anything- whether categorized a malignant or pre-malignant as in the case of MGUS is always anxiety provoking. As you all have learned that MGUS is a pre-malignant plasma cell disorder with the potential to progress to multiple myeloma or other B cell malignancies. Approximately 3% of individuals over 50 have MGUS -whether they know it or not. That number increases with age- 8% when over 70. MGUS transforms/progresses at a rate of about 1% per year- the rate does not change throughout a patients life time.

Once a diagnosis of MGUS is confirmed patients are monitored closely -every 6 months.

As alluded to there are specific disease characteristics that assist in prognosis for the patient population of MGUS. 1) abnormal SFLC ratio, 2) M-spike >1.5 and 3) non-IgG immunoglobulin (IgM or IgA most commonly). Based on have 0,1,2,or 3 of these risk factors one has a 5,21,37 or 58% 20 year risk of progression (Rajkumar et al., Blood 2005). This does not mean that if you have 0 of these factors you do not see anyone for 20 years. Monitoring as stated above remains critical, because these numbers are based on populations not individuals.

[PDJC]

Re: Just Diagnosed MGUS, now what

by PDJC on Wed Mar 05, 2014 4:59 am

Thanks so much. I am now 9 months from diagnosis, and my routine testing every 3 months has indicated that my M protein levels remain low and constant. This along with your reminder are very re-assuring, and I am hopeful for a stable and longterm positive outcome. I intend to live well and enjoy each day, and that's a good thing.