CAN MGUS GO AWAY?

Many in the MGUS community blithely repeat what their doctor told them about if MGUS can go away or not. They "trust their doctor"... I trust mine, but only so far. This is a new diagnosis and even the best doctors do know everything for sure. I do not blame doctors if they tell little white lies to manipulate patients into doing what is best for them. However, that does not negate the truth. 

I see why they maintain this little white lie. It is quite often the case in blood tests that there are mistakes. Particularly with tests for Mgus that can be subject to "interpretation". So they do not want patients to get a result that says MGUS has gone away and *rely* on that -- and never test again. They also do not want to tell patients the truth... that the blood tests are not perfect. Because later they may need to pretend that they are to get you to pursue treatment. 

But the facts -- via studies -- are that Mgus can be transient.

Out of 8,197 regular blood donors, monoclonal gammopathy was detected in 104 subjects (1.3%). The median age at detection was 53 years, the median monoclonal protein concentration was 0.2 g/dL and the cumulative follow-up of these cases amounted to 763 person/years. In two cases asymptomatic multiple myeloma was diagnosed within 6 months of detection of the gammopathy and in 14 cases, the monoclonal gammopathy was transient. Transient Mgus

After a three-month period of successful treatment with antistaphylococcal agents the analysis of serum immunoelectrophoresis revealed that the monoclonal protein had disappeared. Transient Monoclonal Gammopathy Induced by Disseminated Staphylococcus aureus Infection

Disappearance of the M-protein occurs in approximately 2–5% of patients with MGUS. The majority of these patients have low initial concentrations of M-protein. Disappearance of M-protein is often observed after stopping immunosuppressive treatment or initiation of treatment for other disorders such as autoimmune diseases and infections. The clinical relevance and management of monoclonal gammopathy

So why does this matter? Because saying that MGUS can never go away resigns you not to fight, not to try to get it to go away.  Doctors sort of have their legal hands tied. Their job is not to make you any worse and they must comply with the "standard of care" but that bears no relation to facts.   Is MGUS going away a frequent thing? NO. If mine went away I would insist on testing for years to insure it stayed away. But that does not mean we should lie about reality. 

HOW DID I GET MGUS

How I came down with MGUS is a subject of much controversy and confusion.

Genetic Causes?: I doubt it. My parents lived into their 80s and neither were diagnosed with any sort of blood cancer. My dad died from Dementia / Heart issues. My mom of stomach cancer -- which I believe was caused by unnecessary PPI drugs.  There is no one in my larger family that had any sort of blood cancer. In fact the vast majority of my dad's family lived to their late 80s - even with diseases like diabetes. 

Environment Causes: I don't know. I work in a court so every day for the last 15 years I have walked into a metal detector at work. But so have 200+ other people. I once helped my brother redo my mom's house but if I was exposed to anything it was probably over a 3 day period over 10 years ago. Recently they did find chemicals in my tap water but I have only lived here 5 years and since I work for about 12 hours a day the vast majority of my water has been taken in via Poland Springs (at work).

Aging: I think this is the most likely situation for me. This came on during menopause. I could see something happening on my blood tests. For over 30 years my WBCs were around 6.0. But in the fall of 2018 I got a test back that said they were at 5.5. Then in the summer of 2019, it was down to 5.2. Finally, in December of 2019 I got a terrible illness and it dropped to 3.4! But recovered to 4.5 in a few months. It now hovers around 4.5 to (occasionally) 6. My immune system has taken a hit. There is controversy about if MGUS causes the immune system to take a hit, but given the way it happened... 2 years of immune system changes followed by MGUS which appears to have just been starting when caught..... I think it was the immune system. 

Sugar and being overweight.  Probably. I am fortunate that I have been dieting since I was 30 years old. So over the 20 years I probably spent 10 years of the 20 not overweight. But since 2014 I have been largely stable and at a max weight.  Though I am also fortunate that I got hip to low carb dieting in the year 2000 and made a lot of cuts.. (I cut out starches and pasta and rice and potato) I still was eating bread which turns out to be quite bad.  The only established thing that can reduce risk of progression is weight reduction. But I have my doubts as I know many people who have progressed at a normal weight. 

PUFAs? Probably.  I was not aware of their danger until this year. I ate massive amounts of spread with Canola Oil. And now I find out that PUFAs can stay in your system for up to four years? Depressing. I have switched to butter and am doing my best to eliminate them and or have Steric Acid. 

The sad truth is that I probably just will never know. My goal now has to be figuring out how to stop it. 

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.