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Michele 12 years, 3 months ago.
Hereditary link with myeloma??
Just a quick note … has anyone got any thoughts on whether Myeloma is hereditary??? any research to prove it is or it isnt?
Am curious because with some of the other cancers it has a proven link to whether there is a genetic link….and screening is available for family members.. daughters etc? (Breast cancer etc) But with Myeloma there is no proven link and no screening/ blood tests available…??
No one can give any evidence yes or no.. and my sensible head is telling me that if it is down to having simple blood and urine tests to see if there are any abnormalities that have been passed down, why arent they being offered???
Comments please???!!
regards
Only Me!
x
Hi Only Me or should we address you as Only You:-),
The general medical consensus at the moment I understand is that there is no hereditary link. My Consultant said no link when asked.
Although having said that there has been at least two, I think, cases on this web site of father/mother and offspring getting the decease so I suspect the Jury is still out on it until some clever soul does a study.
Both my Brothers died of Cancer but not MM, however I am the first male of my line to get past 55 for 3 generations so whether they would have got MM later in life we will never know!
Kindest regards
David
Hi only me
My husband has mm he had a cousin one the maternal side who died of leuchemia (spelling) at a young age and two 2nd cousins on the paternal side who also died of blood cancers, so who knows!
sarah
Well, quite, I have also been told it's not hereditary, but my father died of it (at the age of 81. He lived with it for 3 years, but how long had it been undiagnosed before then? He was constantly having sore backs, shoulders etc for many years before then…. No- one will comment on this.
My husband has myeloma, and his mother had myeloma.
His mother died before he was diagnosed.
I know what I think. and given the fact that this is a rare cancer how rare does it then become for mother/ son to suffer the same.
Both my children have pondered this problem and decided they don't want to find out after talking to their Dr's
I am inclined to agree with them.
Weird this query 'coz I thought I'd replied to it (but must be something similar) about genetic links.
Firstly, I don't know the answer but I was told that it wasn't linked.
Secondly, I was, last year asked to take part in a large study which is now being carried out asking about my and my family's medical history and a sample was taken (I had to spit in a jar after washing my mouth out – ugh).
It will, obviously, be aaaaaaaaaaaaaaaaaages before the results are know but they are clearly investigating the possibility.
xxxxxxxx
Hello
My mother is 85 and in early stages of MM. I am 58 and have recently had some blood tests because of bone pain. My protein levels are 3.9 and the Consultant is arranging for a full set of x-rays and some additional blood tests! So, although doctors say there is no genetic link I must admit I am a bit concerned. I would say that anyone having this in the family should get checked out if they are experiencing bone pain, anaemia, infections that won't clear etc., Better to be caught early and get treatment than to ignore it. Alot of people don't get diagnosed until the disease has really taken hold.
Best wishes.
Sandie
Hi only me
I think there might be something in the hereditay link in the clinic I attend ther are two sets of brothers with MM plus a gentleman whos father had it a bit more than a fate
Love Jo
From the International Myeloma Foundation:
[i][b]My grandmother died of multiple myeloma and now my dad has been diagnosed with this disease. Is myeloma hereditary?[/b]
There is only a weak family tendency to develop myeloma. Approximately 3-5% of patients with myeloma give a history of myeloma or a related condition within the extended family. Thus far, no specific gene has been linked to this myeloma tendency. When family members get their annual check-ups, make sure that the physicians know about your family medical history. If standard laboratory blood work indicates an increase in protein, the doctor will have a note in the medical chart so that any protein increase is properly evaluated.[/i]
Hi Only me
I have asked previously about a hereditary link,and the answer has always been no, however, recently I had some blood tests done and had raised ESR ……. this then led to me having to be tested for Myeloma!! the doc said best to rule it out with my Mum having it!?!
So really not sure but think that it sounds like it is something that should be investigated. My results so far have proved negative, however, I am under rheumatology having further tests.
Much love Michelle x x
Hi there,
My husband Sam has Myeloma and was diagnosed 2 years ago aged 35.
Hi dad sadly passed away from Myeloma, either 10 or 11 years ago, I can't remember exactly how long ago as we weren't together at the time.
He was 58 when he died, I haven't asked a lot of questions about his dad to his mum and Sam was in the RAF and away a lot when he was sick, but I don't think he was diagnosed with it for long before he died, he was one of the classic cases of misdiagnosis, of Osteoporosis (sp) I think.
I have often pondered over this, and have either read somewhere or someone has told me that it is "familiar" but not "hereditary" whatever that is supposed to mean.
Nicki xx
[i]Familial[/i] means there has been some evidence of it "being in families", but we don't yet know why. So far, researchers have failed to find a specific gene that leads one to get MM, but that's not to say there couldn't be a genetic component.
From Cancer Research UK:
[i]A small number of case-control studies have consistently found first-degree relatives (parent, sibling or child) of myeloma or monoclonal gammopathy of undetermined significance (MGUS) patients are two to three times more likely to develop myeloma or MGUS themselves, in comparison with people without a close family history of these conditions. It is currently unclear whether these links are due to shared genetic factors, shared environmental factors (first-degree relatives may be exposed to the same environmental or behavioural risks), or a combination of these.[/i]
Being "two to three times more likely" to get a cancer that is already rare is, as one doctor put it, "like being two to three times more likely to win the lottery". I get what he's saying, although I have mixed feelings about this way of putting it – it reassures relatives of MM patients that they shouldn't worry too much, but I know my mother's response to hearing about the general rarity of the cancer was something along the lines of, "Great, as usual I'm one of the unlucky ones."
When I was finally diagnosed with MM I raised the Q of hereditary links and my consultant told me that there was no evidence of MM being hereditary.
I have noted an American article about a link between MM and MGUS in families but we are talking about small numbers. As someone has already pointed out… if MM is so rare then the chances of hereditary links should be minimal but the evidence from a few people on this site shows that there is a case for further examination of evidence.
The trouble is there must have been quite a few cases where family members have died of misdiagnosed cancer… I went close myself but managed to escape from Wales and a diagnosis of 'Secondary Bone Cancer, Primary Unknown'. My Wales based Consultant had given me a prognosis of 'No Further Treatment or Exploration'… telling me that I had to accept that unless the primary showed itself in time for it to be treated that I would die of the secondary bone cancer. His actual words at the end of the consult (I ended it) were: 'There is a good chance that I will see you on my mortuary slab and still not know what your primary cancer was'.
I ended the consult there and then… I got home and rang my GP (also a musician friend) and he withdrew me from my consultant's 'care' the next day. Five weeks later I was in Nottingham… three weeks later I had been diagnosed and the rest is history.
We moved to Nottingham three years to this day.. the best move we have ever made… even though we desperately miss Fishguard, Pembrokeshire and Wales in general… and of course all our wonderfully supportive friends. 🙂
My children have decided not to push for testing at this moment but they will be keeping a weather eye on developments in MM. My father died of Lung Cancer at the age of 57… I am now 58 and I am determined to get to 60+. 😎
Dai.
My husband Allan was diagnosed May of last year and so I have been keeping up to date with all your comments as and when. I felt I had to reply to this one as Allan's Mum died of the same cancer i.e. Multiple Myeloma and I think there must be some pre-disposition. Allan is 71 now and went through his CTD last year. He is fairly stable now – para protein 14. He takes bonefos as he has for lytic lesions. His mum died at 81 and was diagnosed after a tumour was discovered on her spine. Both Allan and his mum suffered a great deal of pain in their backs before diagnosis and I am of the opinion that the illness could have been picked up much earlier. I worry sometimes that one of our three girls will go on to develop some kind of symptoms. Maybe we should push for some screening?
Carol
My mum was diagnosed with MM in 2006, and her aunty (her mum's sister) died with the condition in 2000.
I asked the consultant if the disease is hereditary when mum was diagnosed, and was told what others on here have said. He said that environmental factors may have some bearing on them both having MM but there is no evidence of it being hereditary.
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