Ever since I began doing research on myeloma, one of my certainties–although with something like myeloma you can never be absolutely certain!!!–has been that myeloma is NOT a hereditary disease. Yes, of course, I’ve read about a few patients who had relatives with myeloma, but…only a few.
If you do an online search, you will find that not much is known about the causes of myeloma. A few known ones are things such as pesticide exposure, past exposure to radiation, genetic changes that turn our plasma cells into MM cells…stuff like that. The family connection seems to be a minor one…
Today, however, I read a Science Daily article that suggested otherwise. As you can see for yourself (goo.gl/jPgDtS), the article begins like this: “Researchers have identified two gene regions that contribute to multiple myeloma, an inherited cancer…”
SAY WHAAAAAT??? MYELOMA…AN INHERITED CANCER?
The Science Daily article picked this up from a newly published gene mapping study that I won’t even try to read today (my brain is still reeling from that “inherited” business). If you’re interested and find technical jargon as fascinating as my kittens find me doing practically anything 😉 , go right ahead and have a look: goo.gl/bTgGmW
Still stunned, I immediately began digging and found a few relatively new studies on the apparent inheritance factor. A 2013 “Leukemia” study uses the expressions “familial clustering” and “genetic predisposition” in its abstract, but the full study isn’t available for free online, so I wasn’t able to check it out. For what it’s worth, here’s the link (to the abstract): goo.gl/kr2Fq2
According to another study published in 2016 (see goo.gl/nNqqJh), full study available online, “Results from this pooled analysis provide compelling evidence to support hypotheses that genetic inheritance plays a role in the aetiology of MM.” The risk is greater if you have a first-degree relative with myeloma, non-Hodgkin lymphoma, Hodgkin lymphoma, or leukaemia.
But is that enough evidence? I mean, can we really define myeloma as an “inherited cancer”?
Of one thing I am certain: nobody in my family has MGUS, let alone MM. I’m the first (and last, since I don’t have any children, apart from the marvelous furry ones, of course!). Besides, based on my most recent readings, I am 100% positive that EBV started my myeloma.
I think there are too many potential causes out there, there’s too much we just don’t know (for example, the bone marrow microenvironment wasn’t even considered to be an important player in myeloma until a decade ago), for us to be able to define myeloma as a hereditary type of cancer. Or…am I wrong?
I’d be really interested to know how many of you have myeloma (or leukemia/lymphoma) in the family…
My husband, at 50 yrs old was diagnosed with MM. His younger brother, at 50 yrs old, was diagnosed with MGUS.
My mother is the only person we are aware of who had MM. There doesn’t seem to be any history that I have found saying it has occurred elsewhere in the family. However, I will be noticing any trends from now on.
I have IgG Lambda MGUS (M spike 1).
I was diagnosed at age 72 (now 77).
Two maternal aunts died of MM; one at age 45, the other at age 92.
No one else in my family has been tested for MGUS nor had any genetic workup.
My diagnosis, as many, was found accidentally in testing for anemia.
My father’s sister died from myeloma. I’ve been diagnosed with smoldering myeloma (15 years), one sister was diagnosed with MGUS, and the other with Chronic Myeloid Leukemia. Hmm…
I’ve assumed exposure to sprayed pesticides as children was a possible cause. I can remember standing outside as small planes flew over spraying the fields. So far, my brother, born after we moved away, is fine.
My myeloma specialist at UAMS hopes my sister with MGUS will send blood and bone marrow specimens for them to study.
My Mother died with Myeloma, she had an Aunt that died with Leukemia.
My grandfather got HIS MM diagnosis when he was in is late 70’s and died 40 years ago. I am the only one with that kind of cancer, and I am not passing it down either, if that would be the case.
Not ‘related’ as such Margaret but as I was nursing my husband through end stage myeloma I was diagnosed with IgA Kappa MGUS. What are the chances? He has since passed away and I am on 3 monthly blood tests and haematologist/oncologist visits. Very scary.
The mother of my sister in law was diagnosed with MM 7 years ago (at the age of 74) her brother with MGUS SOME years later (now He is 70 years old). .
I was diagnoses 2 years ago with smm but none in my family had it .
My father had leukaemia so I am sure that I inherited a genetic weakness.
My mother was diagnosed at 66..two years later..her mother at 83..my auntie had non Hodgkins lymphoma… my mother’s relatives have a history of bone marrow complications..eg leukemia.
But the doctors still say not an inherited disease and aren’t doing anything to have a study or whatever.
My husband passed away July 2017 after a 2 year battle with MM and having had an auto and allowing transplant. Apparently a great uncle of his had MM in his eighties and being so long ago there was no treatment available.
My husband was diagnosed with myeloma in 2011(stage 3) at age 56. His father died of myeloma at age 82.
I found your blog today when I was looking up curcumin and neurotransmitters on a search engine (the search results led me to your post on Curcumin and Happiness).
I’ve now read several of your other blog entries, and left comments on them.
I had heard of myeloma, but I actually did not know what it was.
I have just looked it up on Wikipedia so I can know what it is.
I happened to notice that in the Wikipedia entry, there are a couple of different mentions that it might be familial/inherited.
This reminded me of the most current (the one here) blogpost of yours which I had read earlier tonight, so I came back to it in order to quote from the Wikipedia article:
— “Risk factors include drinking alcohol, obesity, radiation exposure, family history, and certain chemicals.”
— “A familial predisposition to myeloma exists. Hyperphosphorylation of a number of proteins – the paratarg proteins – a tendency which is inherited in an autosomal dominant manner appears a common mechanism in these families. This tendency is more common in African American patients with myeloma and may contribute to the higher rates of myeloma in this group.”
The reference “22” is this article from 2013:
“Inherited predisposition to multiple myeloma.”
The full article is available here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3734900/
“Family pedigree analyses of high-risk families, case-control studies and racial disparities in disease incidence all point to a potential inherited predisposition to MM.”
“While the causes of MM remain poorly understood, factors affecting risk for development of the disease include age, gender, racial and ethnic background, underlying immunodeficiency, exposure to radiation, exposure to dioxin-related compounds, and family history of MM and other hematolymphoid neoplasms [Alexander et al. 2007].
Several lines of direct and indirect evidence also suggest the existence of inherited factors, which may predispose individuals to development of MM, MGUS and other related cancers.
Here we focus on available data in this area and highlight future research directions.”
“To date, over 100 families with multiple affected members with myeloma or other plasma cell dyscrasias have been described and these provide strong evidence for the existence of inherited risk factors for MM.”
And there is much more in the article.
Here are 2 later articles that referenced the above 2013 one:
“Direct evidence for a polygenic etiology in familial multiple myeloma”
“Multiple myeloma and family history of lymphohaematopoietic cancers”
It seems that this is a research avenue that they are finding promising.
Have you done a gene test, such as 23 and Me? The above articles mention some genetic variants that might be involved in myeloma conditions. It might be interesting to compare your genetic results to those, and see if anything overlaps.
I did 23andMe about 5 or 6 years ago, when it was still $99 — I think now it’s $129, or maybe $199 now — and it helped me very much figure out some of my health problems and ways to approach them.
A few years ago, the FDA required that company to make a lot of changes to the way they present the results, so whereas my reports 6 years ago had hundreds of pages about my genetic variants and the health implications of some of the “biggies”, now what you get from 23andMe is more limited —
HOWEVER, you can take the raw data results that they give you of your specific mutations (it’s over 30,000 results), and look them up yourself.
Also there are a number of internet-based programs out there which will give you reports on your genes, if you let them have your raw data file from 23andMe. I have trusted a couple of those enough to submit my file (though with my name and 23andMe testing date obscured inside the file) to them, and what I got back was interesting, but their reports didn’t tell me a whole lot that I didn’t already know, because I had already done so much checking into my raw data myself, based on recommendations I had read on internet discussion forums about things to look for in one’s genetic results.
For example, you can easily find a list of the most well-studied MTHFR “rs” numbers, you can look the rs numbers up in your raw genetic data from 23andMe, see what your personal MTHFR results are, and then do research on the internet to figure out how they might be affecting your health, and what sort of diet, supplements, lifestyle modifications might help you work best with the genes that you have, to be healthier and happier.
You can look up in your personal data the rs numbers that are known to be related to celiac disease, eye color, Vitamin D metabolism, Alzheimer’s, whatever. Research is advancing at a rapid pace, and it’s so interesting.
Every time I’ve read in one of your posts about research articles, the words “skip skip skip”, I have chuckled, because that’s what I do too, through the parts that are too complicated/technical for me, and through the boring/procedural parts!
All the best for your health and happiness!
My father had MM when he was 60 and had a SCT
And survived another 7 years. I was diagnosed after at age 55
And had a SCT and I’ve gone 6 years but it is now rearing it’s ugly head
And I am discontinuing Revlimid I’m going to get all marrow test done.
My mother was diagnosed with Multiple Myeloma at age 86. I am her daughter and was diagnosed with MGUS last year at age 63.
My Mother died in December 1998 of Myeloma and my son died on Christmas Day 1998 of Chronic myeloid leukaemia, my Mum was born 4.8.1921 and my son 13.3.1970 is there any likelihood of a link and also my maternal Grandmother died in 1975 it had been thought by doctors in hospital at one point that she may have leukaemia I think some tests were done but don’t remember any conclusion . I’m interested to know if there is any thing I should be aware of as my son had two children.
My mother has Multiple Myeloma diagnosed in 2011 at age 60. My father has been recently been diagnosed IgA MGUS. One of the oncologist on her team is a leading researcher in the country. He is collecting data to look for possible environmental links. He is also trending data by cities and states., and any other information that can be traced to a cause for this cancer.
Name of the doctor please…sheila green. I cannot get my dr to.take me serious. He says not hereditary that he knows of. Lost mom 9 years ago.