My father died from multiple myeloma and AL amyloidosis in 2008. That same year his brother was diagnosed with multiple myeloma. My uncle received a stem cell transplant and is doing okay, not great.
Also in 2008, I was diagnosed with a systemic autoimmune disease. In 2012 I was told I have polyclonal IgA from immunofixation. Fast forward to 2016: I was just diagnosed with IgA MGUS with a faint band in lambda.
I don't know what to think. I found some research that suggests I have a 4x greater chance of progressing because of my family history. I am also African American.
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Family history of multiple myeloma
Last edited by LMS1966 on Tue Apr 26, 2016 7:43 am, edited 1 time in total.
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LMS1966 - Name: LMS
- Who do you know with myeloma?: my father and uncle
- When were you/they diagnosed?: 2006/2008
- Age at diagnosis: 63
Re: Family history of multiple myeloma
Dear LMS1966:
Have you checked yourself for G6PD (glucose-6-phosphate dehydrogenase)? Generally, African Americans, people from Middle East, Israel, part of Italy, are deficient and it causes autoimmune disease.
I am extremely deficient. Your description sounds familiar to what has happened to me. However, I do not know anyone with multiple myeloma in my family.
Have you checked yourself for G6PD (glucose-6-phosphate dehydrogenase)? Generally, African Americans, people from Middle East, Israel, part of Italy, are deficient and it causes autoimmune disease.
I am extremely deficient. Your description sounds familiar to what has happened to me. However, I do not know anyone with multiple myeloma in my family.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Family history of multiple myeloma
Welcome to the forum, LMS 1966, although I am sorry to hear that so many people in your family have had myeloma, and that now you have MGUS. Do you think that this is due to an environmental factor (such as, you all lived in the same area and were exposed to herbicides or pesticides?), or that it is more of a genetic problem, as MMFeb16 mentions? You and your uncle might be able to get your DNA sequenced, if you are seeing a myeloma specialist. It would be good to see a top notch specialist anyways, to help you to monitor the faint band of 'lambda'. I hope that the MGUS does not progress to myeloma though.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Family history of multiple myeloma
Dear LMS1966: I, too, am sorry to hear about your family experience with multiple myeloma. I hope things go well for you.
I want to bring to your attention some research that I believe is ongoing at the Mayo Clinic in Rochester, Minnesota. After a second opinion consultation with one of Mayo's specialists, I was contacted to see if I and my parents, siblings, and children would agree to participate in a study whose aim is to investigate whether there is a hereditary connection in this disease. We were only required to submit blood samples by mail and to fill out a questionnaire that seemed quite interested in knowing whether we had had any farming experience (thus Nancy's reference to herbicides and pesticides appears apropos). (As it happens, I did grow up on an active farm and was exposed to herbicides and pesticides.)
I do not know what criteria are used to determine who can participate in this study at Mayo, but if you are the kind of person who has an interest in such things, perhaps you might contact Mayo and learn more. To me, your family history seems rather compelling.
I want to bring to your attention some research that I believe is ongoing at the Mayo Clinic in Rochester, Minnesota. After a second opinion consultation with one of Mayo's specialists, I was contacted to see if I and my parents, siblings, and children would agree to participate in a study whose aim is to investigate whether there is a hereditary connection in this disease. We were only required to submit blood samples by mail and to fill out a questionnaire that seemed quite interested in knowing whether we had had any farming experience (thus Nancy's reference to herbicides and pesticides appears apropos). (As it happens, I did grow up on an active farm and was exposed to herbicides and pesticides.)
I do not know what criteria are used to determine who can participate in this study at Mayo, but if you are the kind of person who has an interest in such things, perhaps you might contact Mayo and learn more. To me, your family history seems rather compelling.
Re: Family history of multiple myeloma
Thank you for your replies. My family is from New York City and we have lived there most of our lives. I think it is more of a genetic problem in my family. I will reach out to the Mayo Clinic. I'm sure there are myeloma researchers interested in my family history. Thank you again.
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LMS1966 - Name: LMS
- Who do you know with myeloma?: my father and uncle
- When were you/they diagnosed?: 2006/2008
- Age at diagnosis: 63
Re: Family history of multiple myeloma
Dear LMS1966:
Thirty plus years ago an oncologist said I have blood cancer. It was ruled out by another physician in favor of a virus infection giving me loss of hearing in one day. It was diagnosed as auto immune ear disease. My bone marrow was 20 percent. Serum protein between nine and ten. I was diagnosed as G6PD person.
Today there are not many G6PD experts in the USA - not even at Mayo, Rochester, MN. What they have is G6PD pediatric experts.
Three years ago I was identified as MGUS. And my hematologist felt that what I had thirty years ago was MGUS.
I was diagnosed at Mayo, IgG kappa multiple myeloma stage II A on February 16, 2015. My only symptom of CRAB was three less than a cm lytic lesion on my lower spine, which was not detected by x-ray but by CT/PET scan.
After twelve cycles of Revlimid and dexamethasone and once in three months Zometa, I am close to CR.
G6PD pediatric experts (two of them) I met at Mayo advised me that G6PD and multiple myeloma are different as G6PD is a disease of RBC and multiple myeloma is of WBC.
Both of these have symptoms such as high protein, anemia, kidney and liver failure. So far there is no one in FDA database with G6PD with multiple myeloma.
I was advised to get my siblings and cousins tested for G6PD.
Thirty plus years ago an oncologist said I have blood cancer. It was ruled out by another physician in favor of a virus infection giving me loss of hearing in one day. It was diagnosed as auto immune ear disease. My bone marrow was 20 percent. Serum protein between nine and ten. I was diagnosed as G6PD person.
Today there are not many G6PD experts in the USA - not even at Mayo, Rochester, MN. What they have is G6PD pediatric experts.
Three years ago I was identified as MGUS. And my hematologist felt that what I had thirty years ago was MGUS.
I was diagnosed at Mayo, IgG kappa multiple myeloma stage II A on February 16, 2015. My only symptom of CRAB was three less than a cm lytic lesion on my lower spine, which was not detected by x-ray but by CT/PET scan.
After twelve cycles of Revlimid and dexamethasone and once in three months Zometa, I am close to CR.
G6PD pediatric experts (two of them) I met at Mayo advised me that G6PD and multiple myeloma are different as G6PD is a disease of RBC and multiple myeloma is of WBC.
Both of these have symptoms such as high protein, anemia, kidney and liver failure. So far there is no one in FDA database with G6PD with multiple myeloma.
I was advised to get my siblings and cousins tested for G6PD.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
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