Several years ago I decided to have a full physical done. The blood work came back that I had an elevated protein count. I was advised to have further testing. Well... I put it off and wound up forgetting about it for a few years.
A bit over two years ago I had blood tests again for a new insurance policy. The elevated protein count was still there so I decided to see a specialist. After more blood work, dexascans and a bone marrow biopsy it was determined that I have MGUS. I take calcium supplements because there was some spots of minor bone loss indicated by the dexascan. (I had another scan done last week and I'm waiting on the result.)
Right now things are pretty stable with only minor fluctuations in the blood results. I've been tested every six months for the last two years. I'll be 42 years old in a couple weeks.
From what I've read... 1 to 3% of people over 50 have MGUS and about 5% of those over 70 have it. Why did I have to win this lottery? My hematologist says that I have nothing to worry about and that it's just something to monitor. I'm still worried though. It's always there in the back of my mind.
My kids are 15 and 12. When they were born I was already looking forward to being a grandfather. I never knew either of my grandfathers because the both died before I was born. My father and my wife's father both died before our children were born. One of my life goals is to hold my grandchildren and for them to know and remember me.
I've been reading some of the posts here. While my story doesn't begin to compare with what many here have gone through, I'm still.... I'm afraid.
Thank you for reading.
Forums
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Re: Hello....
AMRA-
There is nothing wrong with being concerned about where this disease will go in the future, but don't let it stop you from living your life now. You are doing what you need to do to monitor the status of your health. Continue to keep up to date on the treatments that are, and will be, available if you should ever need them. Note that I said, "should you ever need them".
At this point there is nothing that says that you won't be there to see your sons graduate from high school and college. There is nothing that says that you won't be here if they marry and if they have children. None of us knows what the future will bring. The only thing that you know is that you have a health concern that needs to be followed.
Enjoy everything about what you have with your sons now. Let tomorrow come as it comes and don't worry about it. Make plans so that your family will be cared for should something negative happen, but don't expect it to happen.
Have a wonderful day,
Nancy
There is nothing wrong with being concerned about where this disease will go in the future, but don't let it stop you from living your life now. You are doing what you need to do to monitor the status of your health. Continue to keep up to date on the treatments that are, and will be, available if you should ever need them. Note that I said, "should you ever need them".
At this point there is nothing that says that you won't be there to see your sons graduate from high school and college. There is nothing that says that you won't be here if they marry and if they have children. None of us knows what the future will bring. The only thing that you know is that you have a health concern that needs to be followed.
Enjoy everything about what you have with your sons now. Let tomorrow come as it comes and don't worry about it. Make plans so that your family will be cared for should something negative happen, but don't expect it to happen.
Have a wonderful day,
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Hello....
AMRA. I feel for you. I am 40 and was told I had multiple myeloma on Dec. 15 2011. I have 3 wonderful kids 10,12,14. A wonderful wife, a good job and a nice home. . Shortly after diagnosis, while going for a second opinion I was told I was Smoldering. Then told I was Active asymptomatic 2 weeks later by the same Dr. Which one is it?? My gut tells me Smoldering according to everything I read.
I am Planning to go to NIH as soon as possible and am waiting to hear back from them. Hopefully, then I will have my answers.
My condition was found while applying for insurance also. I was planning my own funeral for the first couple of days after I first heard the news. Thankfully I am past that and am driven and determined.
First, to find out which I actually have and then to make sure that I see my kids grow up. And, not as a sick person but as the strong and confident Man they know.
So be strong and don't just accept answers. Research, ask questions and obsess over it. It's tough but, what other choice do we have? These forums are a great help with
many very compassionate and educated people.
God Bless you and your Family
Art
I am Planning to go to NIH as soon as possible and am waiting to hear back from them. Hopefully, then I will have my answers.
My condition was found while applying for insurance also. I was planning my own funeral for the first couple of days after I first heard the news. Thankfully I am past that and am driven and determined.
First, to find out which I actually have and then to make sure that I see my kids grow up. And, not as a sick person but as the strong and confident Man they know.
So be strong and don't just accept answers. Research, ask questions and obsess over it. It's tough but, what other choice do we have? These forums are a great help with
many very compassionate and educated people.
God Bless you and your Family
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Hello....
Dear AMRA,
There are a number of features of MGUS that can be used to determine the level of risk. Good risk features would include an IgG MGUS, an "M spike" level of less than 1.5 g/dL, and a normal serum free light chain ratio. If you have all of these good risk features, your risk of developing myeloma or some other related disorder is only 5% at 20 years (21% with one risk factor, 37% with two risk factors, 58% with all three risk factors). It would be good to determine this information if it has not already been done. Things may not seem as bad as you think. Most people with MGUS will never require any therapy for their problem. There is a lot of research on-going in this area to better determine who is at highest risk of progression to myeloma or other related disorder and whether early intervention may be of value in select cases.
Hang in there and let us know if we can help you in any other way!
Pete V.
There are a number of features of MGUS that can be used to determine the level of risk. Good risk features would include an IgG MGUS, an "M spike" level of less than 1.5 g/dL, and a normal serum free light chain ratio. If you have all of these good risk features, your risk of developing myeloma or some other related disorder is only 5% at 20 years (21% with one risk factor, 37% with two risk factors, 58% with all three risk factors). It would be good to determine this information if it has not already been done. Things may not seem as bad as you think. Most people with MGUS will never require any therapy for their problem. There is a lot of research on-going in this area to better determine who is at highest risk of progression to myeloma or other related disorder and whether early intervention may be of value in select cases.
Hang in there and let us know if we can help you in any other way!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
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