My dad died in 1993 from multiple myeloma and my mum was diagnosed in 2012. My mum has the light chain one which caused kidney failure and the need to go on dialysis 3 times a week since 2012.
Could I be at risk of multiple myeloma due to both parents having this? I am 50 and my mum is 74.
My mum is struggling as in the last 5 months she had also had aggressive squamous cell carcinoma removed 3 times and had a cut that measures 65 multiple myeloma (2.6 inches) down her face after the final surgery which she had to be awake for.
Is this connected with multiple myeloma??
Mum's oncologist, who she sees every 3 months, gives us varying information or none at all when we attend. Mum's light chains were around 400 then down to 7 and stated that the lab must have tested someone else's tests, as she is only on dexamethasone 4 tablets once a week after not being able to continue on thalidomide. I am not confident as, when she examined her face, she insisted that it could not be squamous cell carcinoma again and the needle biopsy confirmed it.
As I am mum's sole carer I see her losing weight and not looking very well. I am also struggling to cope as I also work.
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Re: Both parents had multiple myeloma - am I at risk?
Hawk11,
I'll try to take a stab at your first question.
Two years ago, two multiple myeloma specialists told met that there is no genetic link with multiple myeloma. However, there appears to be emerging evidence that there may be a link (see below). At a minimum, I would suggest keeping an eye on your total protein and globulin levels when you get a routine physical exam. At least that is what I suggested to my older brother.
DT Koura and AA Langston, "Inherited predisposition to multiple myeloma," Therapeutic Advances in Hematology, Aug 2013; 4(4): 291–297 (PubMed full text).
Abstract:
Multiple myeloma (multiple myeloma) is the second most common hematologic malignancy in the United States, after non-Hodgkin lymphoma. Family pedigree analyses of high-risk families, case-control studies and racial disparities in disease incidence all point to a potential inherited predisposition to multiple myeloma. Genome-wide association studies (GWASs) have identified susceptibility loci in a number of cancers and such studies are currently underway in multiple myeloma.
To date, GWASs in multiple myeloma have identified several potential regions of interest for further study on chromosomes 3p22, 7p15.3, 8q24 and 2p23.3. In addition, several targets of paraproteins (so called ‘paratargs’) in multiple myeloma have been identified. Hyperphosphorylation of the paratarg protein, which is inherited in an autosomal dominant manner, appears a common mechanism underlying the antigenicity of these proteins. One particular protein, hyperphosphorylated paratarg-7 (pP-7) is a common target in persons with myeloma and has also been identified in affected members of several high-risk multiple myeloma families. It appears that the frequency of pP-7 as an antigenic target may be particularly high in African American patients with multiple myeloma, which could be part of the explanation for observed racial disparities in the incidence of multiple myeloma.
In this review we focus on available data in the area of inherited predisposition to multiple myeloma, and highlight future research directions.
I'll try to take a stab at your first question.
Two years ago, two multiple myeloma specialists told met that there is no genetic link with multiple myeloma. However, there appears to be emerging evidence that there may be a link (see below). At a minimum, I would suggest keeping an eye on your total protein and globulin levels when you get a routine physical exam. At least that is what I suggested to my older brother.
DT Koura and AA Langston, "Inherited predisposition to multiple myeloma," Therapeutic Advances in Hematology, Aug 2013; 4(4): 291–297 (PubMed full text).
Abstract:
Multiple myeloma (multiple myeloma) is the second most common hematologic malignancy in the United States, after non-Hodgkin lymphoma. Family pedigree analyses of high-risk families, case-control studies and racial disparities in disease incidence all point to a potential inherited predisposition to multiple myeloma. Genome-wide association studies (GWASs) have identified susceptibility loci in a number of cancers and such studies are currently underway in multiple myeloma.
To date, GWASs in multiple myeloma have identified several potential regions of interest for further study on chromosomes 3p22, 7p15.3, 8q24 and 2p23.3. In addition, several targets of paraproteins (so called ‘paratargs’) in multiple myeloma have been identified. Hyperphosphorylation of the paratarg protein, which is inherited in an autosomal dominant manner, appears a common mechanism underlying the antigenicity of these proteins. One particular protein, hyperphosphorylated paratarg-7 (pP-7) is a common target in persons with myeloma and has also been identified in affected members of several high-risk multiple myeloma families. It appears that the frequency of pP-7 as an antigenic target may be particularly high in African American patients with multiple myeloma, which could be part of the explanation for observed racial disparities in the incidence of multiple myeloma.
In this review we focus on available data in the area of inherited predisposition to multiple myeloma, and highlight future research directions.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Both parents had multiple myeloma - am I at risk?
I think it is hard to know if you are at risk. I lost my sister to multiple myeloma and I also have it. The question is, is it genetic, coincidence, or environmental?
We obviously have the same genes chances. I don't know that all siblings have exactly the same genetic make up. After all, most have some physical differences unless they are identical twins.
My sister and I were less than 2 years apart in age, so we pretty much grew up n the same bubble.
We obviously have the same genes chances. I don't know that all siblings have exactly the same genetic make up. After all, most have some physical differences unless they are identical twins.
My sister and I were less than 2 years apart in age, so we pretty much grew up n the same bubble.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Both parents had multiple myeloma - am I at risk?
Hi Hawk11, I am sorry to hear about your family's struggles with multiple myeloma, and I certainly hope that you never have it! I guess the best would be, in giving your family history to your GP, to emphasize that you think you may be at risk. You can keep an eye on your blood tests for anemia, kidney function, calcium in the blood, and of course, any unexplained pain that might be related to bone lesions. You could also ask for an SPEP test. There are probably more tests for monitoring that a specialist might recommend.
Epidemiological studies may eventually determine why 'clusters' of patients occur, be it from genetic, or environmental causes.
With your mother's problems, she seems to be unable to tolerate thalidomide. Would she have access to Revlimid, Velcade or other myeloma fighting drugs specific to this disease? Perhaps you could share where you live, to give context, and others could advise on any new route she could take.
All the best. Caregivers are wonderful people and I am sure that your mother must really appreciate all of your help!
Epidemiological studies may eventually determine why 'clusters' of patients occur, be it from genetic, or environmental causes.
With your mother's problems, she seems to be unable to tolerate thalidomide. Would she have access to Revlimid, Velcade or other myeloma fighting drugs specific to this disease? Perhaps you could share where you live, to give context, and others could advise on any new route she could take.
All the best. Caregivers are wonderful people and I am sure that your mother must really appreciate all of your help!
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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: Both parents had multiple myeloma - am I at risk?
Hi Hawk11,
I too am sorry to hear of your and your family's struggles with multiple myeloma.
While most cases of myeloma are sporadic (meaning not driven by a familial predisposition), we do know that people who have a first degree relative (parent or sibling) with myeloma are at slightly higher risk for developing myeloma then the general population. Since both of your parents were affected (presumably independently), then you likely have an inherited risk from each – although the risk remains low. As suggested above, we are starting to learn more about inherited risk, but there is limited data to date.
However, since this is known, it would not be unreasonable for your primary care physician to check a serum protein electropheresis (SPEP), immunofixation, serum free light chains and quantitative immunoglobulins periodically.
BUT please know that the risk is very small, as the vast MAJORITY of multiple myeloma patients have siblings, parents and children who NEVER develop the disease.
Hope this helps!
I too am sorry to hear of your and your family's struggles with multiple myeloma.
While most cases of myeloma are sporadic (meaning not driven by a familial predisposition), we do know that people who have a first degree relative (parent or sibling) with myeloma are at slightly higher risk for developing myeloma then the general population. Since both of your parents were affected (presumably independently), then you likely have an inherited risk from each – although the risk remains low. As suggested above, we are starting to learn more about inherited risk, but there is limited data to date.
However, since this is known, it would not be unreasonable for your primary care physician to check a serum protein electropheresis (SPEP), immunofixation, serum free light chains and quantitative immunoglobulins periodically.
BUT please know that the risk is very small, as the vast MAJORITY of multiple myeloma patients have siblings, parents and children who NEVER develop the disease.
Hope this helps!
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Both parents had multiple myeloma - am I at risk?
One thing I didn't see mentioned in these posts about familial predisposition is that many family members are exposed to the same environmental triggers. Maybe living near an oil refinery, or a lumber mill, or both working on farms with exposures to the same chemicals?
It might look related, but that would have to be separated out.
Identical twins separated at birth studies would be an interesting thing to look at (and has probably been looked at).
It might look related, but that would have to be separated out.
Identical twins separated at birth studies would be an interesting thing to look at (and has probably been looked at).
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Stann
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