Hi there,
I'm a 33 year old male from Connecticut with Gaucher disease and just a few weeks ago I was diagnosed with MGUS. According to my doctor, people with Gaucher Disease are 30% more likely to get MGUS than the average person.
My concern is that I'm relatively young to have MGUS and, as a married father of a 1 year old daughter, I'm concerned for my future.
My diet is extremely strict, I don't use drugs and I'm in really good shape, but somehow I have MGUS. Anyway, my plan is battle this disease like I do with everything else, and hopefully this never turns into multiple myeloma.
My question to the group is there anything that you do or is there anything you eat that's known to prolong this from becoming myeloma? If so, please share!
Take care,
Mike B.
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Re: Gaucher disease and now diagnosed with MGUS
Mike, I am so sorry to hear that you have been diagnosed with MGUS, especially at such a young age. You probably already know that most people with MGUS never develop active myeloma. I, however, was not one of the lucky ones because my MGUS developed into active myeloma after six years of careful observation.
The first question I posed when I learned of my original diagnosis was "What changes should I make to my diet?" My doctor told me that my condition had nothing to do with my diet. There are many people who post here who do not believe this, but I actually do. I always had a healthful diet even before diagnosis and continue with the same. I do believe that diet will not cure myeloma, but it is nevertheless necessary to keep the body healthy in other respects in order to deal better with the medications that one needs to ingest to fight the disease. I also strongly believe that exercise is of utmost importance for the same reason. The other day, when I was getting my monthly blood draw, I met a man who has pancreatic cancer. He was telling the nurses that he considers serious walking every day essential for building blood cells. I had to smile and I told him that I had concluded the very same, but without any scientific evidence.
I am much older than you, but I am thankful that at the time I finally entered the active myeloma stage I was in all other respects in good physical condition. So far in my treatment I believe that I have handled the medications quite well. I attribute my success to having been in good condition at the time treatments started as a result of a prior healthful diet and regular exercise. I do not know what limitations your Gaucher's disease places upon you, but my recommendation would be to eat as healthful a diet as is feasible and to get as much exercise as is reasonable for you. What else can we do at any stage of this disease?
Finally, I consider myself exceedingly lucky to have learned about my MGUS status when I did. Many people never know that they have this precursor of myeloma and present to a hospital only after they have already experienced serious organ damage caused by active myeloma. While the stage of myeloma does not seem to be too important as far as treatment goes, I am convinced that the earlier the disease is diagnosed and the earlier treatment begins, the better the outcome. This is just another of my personal opinions. Perhaps others will differ. What I mean to say is that your MGUS should be carefully monitored and if it ever becomes clear that you have reached a point where treatment is warranted, go for it before there is damage to your bones or kidneys, etc.
There are so many wonderful advances in myeloma research and you are so young that, hopefully, by the time anything changes in your current status, there will be excellent treatments available for you. Best of luck to you.
The first question I posed when I learned of my original diagnosis was "What changes should I make to my diet?" My doctor told me that my condition had nothing to do with my diet. There are many people who post here who do not believe this, but I actually do. I always had a healthful diet even before diagnosis and continue with the same. I do believe that diet will not cure myeloma, but it is nevertheless necessary to keep the body healthy in other respects in order to deal better with the medications that one needs to ingest to fight the disease. I also strongly believe that exercise is of utmost importance for the same reason. The other day, when I was getting my monthly blood draw, I met a man who has pancreatic cancer. He was telling the nurses that he considers serious walking every day essential for building blood cells. I had to smile and I told him that I had concluded the very same, but without any scientific evidence.
I am much older than you, but I am thankful that at the time I finally entered the active myeloma stage I was in all other respects in good physical condition. So far in my treatment I believe that I have handled the medications quite well. I attribute my success to having been in good condition at the time treatments started as a result of a prior healthful diet and regular exercise. I do not know what limitations your Gaucher's disease places upon you, but my recommendation would be to eat as healthful a diet as is feasible and to get as much exercise as is reasonable for you. What else can we do at any stage of this disease?
Finally, I consider myself exceedingly lucky to have learned about my MGUS status when I did. Many people never know that they have this precursor of myeloma and present to a hospital only after they have already experienced serious organ damage caused by active myeloma. While the stage of myeloma does not seem to be too important as far as treatment goes, I am convinced that the earlier the disease is diagnosed and the earlier treatment begins, the better the outcome. This is just another of my personal opinions. Perhaps others will differ. What I mean to say is that your MGUS should be carefully monitored and if it ever becomes clear that you have reached a point where treatment is warranted, go for it before there is damage to your bones or kidneys, etc.
There are so many wonderful advances in myeloma research and you are so young that, hopefully, by the time anything changes in your current status, there will be excellent treatments available for you. Best of luck to you.
Re: Gaucher disease and now diagnosed with MGUS
Hi Michael,
Sorry to hear about this. However, this is a somewhat encouraging article that describes how enzyme replacement therapy (ERT) used to treat Gaucher can potentially reduce the risk of MGUS progressing to multiple myeloma (see last sentence of the article):
M de Fost et al, "Immunoglobulin and free light chain abnormalities in Gaucher disease type I: data from an adult cohort of 63 patients and review of the literature," Annals of Hematology, June 2008 (full text of article)
Are you currently on an ERT?
I would also encourage you to seek out a top multiple myeloma specialist to discuss your situation further. If you let us know what city you are in, folks on this forum can make some recommendations on specialists / facilities.
Sorry to hear about this. However, this is a somewhat encouraging article that describes how enzyme replacement therapy (ERT) used to treat Gaucher can potentially reduce the risk of MGUS progressing to multiple myeloma (see last sentence of the article):
M de Fost et al, "Immunoglobulin and free light chain abnormalities in Gaucher disease type I: data from an adult cohort of 63 patients and review of the literature," Annals of Hematology, June 2008 (full text of article)
In summary, there is a high prevalence in GD I of both polyclonal as well as monoclonal gammopathies, including multiple myeloma. The risk of these diseases increases with age. Mechanisms causing gammopathies remain to be elucidated, but include the disturbance of cytokine levels involved in inflammation and B-cell function. ERT is likely to have a beneficial effect in preventing the occurrence and the progression of gammopathies.
Are you currently on an ERT?
I would also encourage you to seek out a top multiple myeloma specialist to discuss your situation further. If you let us know what city you are in, folks on this forum can make some recommendations on specialists / facilities.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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