MGUS

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MGUS

by mdhtn on Tue Feb 05, 2008 12:00 AM

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I'm a 51 yr old male diagnosed about 6 months ago with MGUS. Seeing the anxiety expressed in this forum about MGUS, I thought I'd post this entry about a few things I've learned:

1. At www.mayoclinic.org/news2006-rst/3302.html, Dr, Kyle indicates that 3.2% of people over age 50 have MGUS. Based on census data (www.census.gov/popest/national/asrh/NC-EST2006-sa.html), there about 100 million people or so over age 50; that means over 3 million of us in the U.S. alone have MGUS. That's a lot of people! Of course there are even more if we counted those with MGUS with onset before age 50. Worldwide there are probably 50 million or more of us. MGUS is not rare.

2. Since these spike proteins are produced by our immune systems (i.e. are part of defending against disease), I have come to think of MGUS as a bodily "defense alert." MGUS means our bodies are shooting a very specific kind of bullet (an antigen), and in most cases doctors cannot identify a disease state it is shooting at. In any given year, 99% of the time there is no disease, so in most cases MGUS may be simply an overactive defense system. It might be compared to an allergy (an oversensitive immune system), and is the opposite of AIDS (i.e. a damaged immune system). There is usually NOT a "ticking time bomb."

3. The risk of MGUS progressing to a form of cancer is about 1% per year (see A Long Term Study of Prognosis in MGUS, New England Journal of Medicine Feb 21 2002, by Robt Kyle et al -- http://content.nejm.org/cgi/content/full/346/8/564 ).  So the odds of staying healthy are strongly in our favor -- even over 30-40+ years, the  odds of staying healthy are greater than those of getting cancer! 

Of course, for about 1% of us each year year (30,000 out of that 3 million), an oncoming disease state will rises to the level of being defined as cancer. But most of us will outlive MGUS and die of something else altogether. 

4. I try to ignore all uncontrollable risk, de-emphasize 1% risks, and concentrate on 3-5% risks. Since MGUS is a condition of the immune system over which we have little control, let's concentrate on the things we CAN control to extend quality lives -- exercise, nutrition, cutting risky behaviors, etc. Many more lives can be saved, extended or improved this way than by worrying about uncontrollable risk. There are so many other uncontrollable things we could choose to worry about, like terrorism, freak auto accidents, etc etc. to no effect. Let's just act on what we can control and live gratifying lives anyway!

 

RE: MGUS

by Momster on Thu May 08, 2008 12:00 AM

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Hi,

It has been some months since I was here. Much has been happening to me and in my life.   In 2003, I was having so much trouble with nerves not working properly, my neurologist had the 24 hr test done, and diagnosed me with mgus. Since then, I have seen the oncologist/hematologist every year after a beginning of twice in the first year. My numbers increase by 10 every year, but according to him, I am still at a very low ...1-3% chance of developing cancer.

At first, there was NOTHING on the internet about mgus. I searched everyday and emailed doctors, etc. trying to find out exactly what I was dealing with as the first time I saw the doctor, he didn't tell me. Just was short of time and explanation, telling me not to worry.

Recently, I have been looking up other things as I also have Lupus and fibromyalgia, hemangioma, and essential tremors. During those searches, I have discovered that any who are recently diagnosed have so much more to find out what they might face....Might is the key word.

One thing: I have bleeding in my eyes that several eye specialists have not been able to diagnose. I thought it might have to do with the thickening of my blood due to the mgus. Last week, I was on a web site and found out that the thickening of the blood in mgus can cause bleeding in the eyes and elswhere.

I also found out that MM is not the only cancer that can have a mgus as a precursor, but MM is the main one that comes. IF IT COMES.

The main thing is: there are many cases of mgus that never develop into cancer. And now at least, there is more information to find than just a few years ago. With more research into mgus, perhaps there will be a way to set more minds at rest and even fewer that develop into cancer.

I was afraid. I went to the oncologist by myself and waited in the waiting room for more than 3 hours as he ran behind, knowing that oncologist/hematologists treat cancers of the blood. The wait was terrible as was what I found out in my searches that first year.

But I have learned in these 5 years that it is possible not to think about it every day, not to consider it so much as a time bomb, but an un-set, un-timed, bomb material. I hope any out there who read this will take it as a bit of hope that you too can learn to live with it, as that may be exactly what you do. Which is great.

 

RE: MGUS

by gbrum1952 on Thu Dec 11, 2008 12:00 AM

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On 5/8/2008 Momster wrote:

Hi,

It has been some months since I was here. Much has been happening to me and in my life.   In 2003, I was having so much trouble with nerves not working properly, my neurologist had the 24 hr test done, and diagnosed me with mgus. Since then, I have seen the oncologist/hematologist every year after a beginning of twice in the first year. My numbers increase by 10 every year, but according to him, I am still at a very low ...1-3% chance of developing cancer.

At first, there was NOTHING on the internet about mgus. I searched everyday and emailed doctors, etc. trying to find out exactly what I was dealing with as the first time I saw the doctor, he didn't tell me. Just was short of time and explanation, telling me not to worry.

Recently, I have been looking up other things as I also have Lupus and fibromyalgia, hemangioma, and essential tremors. During those searches, I have discovered that any who are recently diagnosed have so much more to find out what they might face....Might is the key word.

One thing: I have bleeding in my eyes that several eye specialists have not been able to diagnose. I thought it might have to do with the thickening of my blood due to the mgus. Last week, I was on a web site and found out that the thickening of the blood in mgus can cause bleeding in the eyes and elswhere.

I also found out that MM is not the only cancer that can have a mgus as a precursor, but MM is the main one that comes. IF IT COMES.

The main thing is: there are many cases of mgus that never develop into cancer. And now at least, there is more information to find than just a few years ago. With more research into mgus, perhaps there will be a way to set more minds at rest and even fewer that develop into cancer.

I was afraid. I went to the oncologist by myself and waited in the waiting room for more than 3 hours as he ran behind, knowing that oncologist/hematologists treat cancers of the blood. The wait was terrible as was what I found out in my searches that first year.

But I have learned in these 5 years that it is possible not to think about it every day, not to consider it so much as a time bomb, but an un-set, un-timed, bomb material. I hope any out there who read this will take it as a bit of hope that you too can learn to live with it, as that may be exactly what you do. Which is great.

Hello! I was diagnosed with MGUS in April 2008. My eye doctor told me that there is evidence of bleeding in my right eye. Also, I had a "bowel stroke" (ischemic bowel) in September while I was at UAMS in Little Rock getting a second opinion about the MGUS.

Many, MANY med tests were performed, but still no definitive reason for the eye and gut hemorrhages.

My opinion is that both incidents were caused by MGUS "M" spike. Your story is the only one I've seen that parallels mine. Please get in touch with me if you can;I'd like to discuss this topic in more detail with you. Thank you!

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

RE: MGUS

by Coach_Roy on Fri Jun 10, 2011 10:16 AM

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On Dec 11, 2008 12:00 AM gbrum1952 wrote:

 

On 5/8/2008 Momster wrote:

Hi,

It has been some months since I was here. Much has been happening to me and in my life.   In 2003, I was having so much trouble with nerves not working properly, my neurologist had the 24 hr test done, and diagnosed me with mgus. Since then, I have seen the oncologist/hematologist every year after a beginning of twice in the first year. My numbers increase by 10 every year, but according to him, I am still at a very low ...1-3% chance of developing cancer.

At first, there was NOTHING on the internet about mgus. I searched everyday and emailed doctors, etc. trying to find out exactly what I was dealing with as the first time I saw the doctor, he didn't tell me. Just was short of time and explanation, telling me not to worry.

Recently, I have been looking up other things as I also have Lupus and fibromyalgia, hemangioma, and essential tremors. During those searches, I have discovered that any who are recently diagnosed have so much more to find out what they might face....Might is the key word.

One thing: I have bleeding in my eyes that several eye specialists have not been able to diagnose. I thought it might have to do with the thickening of my blood due to the mgus. Last week, I was on a web site and found out that the thickening of the blood in mgus can cause bleeding in the eyes and elswhere.

I also found out that MM is not the only cancer that can have a mgus as a precursor, but MM is the main one that comes. IF IT COMES.

The main thing is: there are many cases of mgus that never develop into cancer. And now at least, there is more information to find than just a few years ago. With more research into mgus, perhaps there will be a way to set more minds at rest and even fewer that develop into cancer.

I was afraid. I went to the oncologist by myself and waited in the waiting room for more than 3 hours as he ran behind, knowing that oncologist/hematologists treat cancers of the blood. The wait was terrible as was what I found out in my searches that first year.

But I have learned in these 5 years that it is possible not to think about it every day, not to consider it so much as a time bomb, but an un-set, un-timed, bomb material. I hope any out there who read this will take it as a bit of hope that you too can learn to live with it, as that may be exactly what you do. Which is great.

Hello! I was diagnosed with MGUS in April 2008. My eye doctor told me that there is evidence of bleeding in my right eye. Also, I had a "bowel stroke" (ischemic bowel) in September while I was at UAMS in Little Rock getting a second opinion about the MGUS.

Many, MANY med tests were performed, but still no definitive reason for the eye and gut hemorrhages.

My opinion is that both incidents were caused by MGUS "M" spike. Your story is the only one I've seen that parallels mine. Please get in touch with me if you can;I'd like to discuss this topic in more detail with you. Thank you!

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- "" target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html-- " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html--

 

I was diagnosed with MGUS in 2008 also.  This past week I had some similar things happen.  On a routine visit to the optometrist and dilation of my eyes, she found a bleed behind my right eye, sent me to an Opthamologist and he said it was most likely related to the MGUS.  I am now going to make an  appointment with my Oncologist to discuss.  During this past week I also a long bought of gastric distress.  I tried everything to stop it, Immodium, Prevacid, Acid Reducer and it finally stopped. I guess this is all related. What have you found to be effective to prevent the bowl stroke as you called I think.  Is this a progression of the disease.  I feel a little light headed now too.

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