WHAT IS MGUS?

Monoclonal gammopathy of undetermined significance (MGUS) is a plasma cell dyscrasia in which plasma cells or other types of antibody-producing cells secrete a myeloma protein, i.e. an abnormal antibody, into the blood; this abnormal protein is usually found during standard laboratory blood or urine tests. MGUS resembles multiple myeloma and similar diseases, but the levels of antibodies are lower the number of plasma cells (white blood cells that secrete antibodies) in the bone marrow is lower.

I am sure your eyes are glazing over. I had used to think that I could handle any cancer that came my way but the complexity of the body and in particular blood is amazing. 

To really get a sense of the condition you need to have about 55 tests. I could go through them here but someone already did it better. I link to a great document from the International Myeloma Society. Tests for Mugs 

I suspect that my disease was caught literally moments after it appearing.  At first, the only thing wrong with me was an "M-spike" and that "M-spike" was low. All of my other blood tests came back normal and showing no disease. This was promising.  But just recently my latest tests kept the "M-spike" the same but my Immunoglobulins were abnormal and my Free light chains were normal but the ratio (which I understand is more important) was not. IMHO evidencing that something is happening negatively.

For the record I have: IGM Kappa. This should be noted on your tests.  

The good news: IGM is more likely to develop into Waldenstrom macroglobulinemia (WM) rather than Multiple Myeloma. This is an "indolent" cancer which, right now, has an 86% survival rate after 5 years... and 66% after 10. 

The bad news: IGM is more likely to progress. And also, the IGM immunoglobbin is the largest... so having a lot of it around can lead to thicker blood, causing things like strokes. (though you can get treated for this). Finally, since WM is rare, I am not sure I will get the best treatment. 

HOW I GOT THE NEWS

I will never forget it, February 26, 2020. I was looking at my computer at work while someone else was talking to me... and I noticed I had an e-mail from my doctor. So I logged on to the medical portal. 

I had been having terrible back pain, I thought, because of intermittent fasting.  I had asked my doctor for an electrolyte panel because I was worried my electrolytes were off.  That morning, my results came back and my calcium had been high(er) than normal (but still normal). So like every good Google doctor, I had put in to google - "calcium and back pain" and come up with Multiple Myeloma (MM). Oh, yes, my heart had skipped a beat.  But it became clear that I likely didn't have MM. Every other blood test... including my CBC had come back normal. No, it couldn't be that... I said to myself. 

But that afternoon it seemed clear that my doctor had the same thought. Her e-mail told me that she had taken my blood sample and retested it (actually kind of get irked that she can just do that and not tell me before doing that) for MM. 

The good news: I didn't have MM.

The bad news:   I had Mgus or Monoclonal Gammopathy of Undetermined Significance. 

I felt like I had entered a tunnel where everything around me was happening slowly. OMG, I have something wrong with me! This is the first time I have ever had anything seriously wrong with me... and there it is... it only took a second to google that and see words like "precusor" and "cancer".  The person talking to me just would not shut up so I told her I had to go and went downstairs to my office. In the elevator ride I told myself not to panic. 

My doctor told me that it was "no big deal" and it only progressed at a rate of 1% per year.  But she had scheduled a doctor's appointment for me the next day with a hematologist and oncologist. Um... that isn't good. Just a few google searches and it was clear that this 1% progression per year stuff was absolute bullshit, meant to keep people calm. 

And ever since that day, it is all I can think of.  If you talk to anyone, they will tell you how it "isn't cancer" but imho, that is bull. It is cancer stage one. Sure that stage might last a long time... or it might not ever progress to cancer.  But the weight of cancer.. some day.. is over my head now and let's face it, I have never been that lucky. On the one hand you can argue this is good because you will be able to nip this cancer in the bud the moment it gets going... on the other hand, this type of cancer is not massively effected by finding it early. 

For the first year I had hoped it was transient and would go away, but my most recent tests tell me it isn't going to go away. Thing have progressed. Ok not a lot but, enough to know the tests weren't wrong. This is a real thing. 

This blog is dedicated to 1. my journey with it; 2 my guesses as to diet; 3 and information on the latest treatments.  I hope we can all put our heads together and come up with some way to slow it down before it ever gets to cancer.