[Skyblue1Participant]

The last time I was on this site was just over 2 years ago when my wonderful dad was being treated for Multiple Myeloma. Sadly following many kinds of chemo and a stem cell transplant he passed away last year at just 56. I miss him every day. 18 months later my paternal grandma has been diagnosed with myeloma. My grandmas treatment will be oral de to her age. They say its not genetic but I struggle to believe that fully, how can one family be that unlucky?

[MicheleParticipant]

Hi Skyblue

I find your post interesting because I'm convinced Myeloma and other related bloodcancers are genetic.
I was diagnozed with Myeloma in 2011, my father had Non-Hodgkins Lymphoma and my grandfather (dad's father) had leukaemia.

I also know other families with similar patterns.

Whenever I mention it being hereditary, it seems to fall on deaf ears though.

Best wishes to your grandma.

[DaiCroParticipant]

Hi Skyblue…

I appreciate that this news must have been devastating for your family… devastating and frightening at the same same I imagine.

My 3 children have all voiced their concerns… but checks with their GPs have shown completely normal levels at this stage… I have told them to check in with their GPs as they grow older, every 2 years or so, excepting that they start with back or general bone pain.

My siblings have also been for checks, with only 1 older sister (8 siblings in all) showing any elevated blood signs… but she has had them for years and I suffered with acute anaemia for over 45 years (I will be 60 this year) before being diagnosed with MM (of which I am told is a pure co-incidence and has no bearing on my disease).

Like your medics my Consultant has brushed aside any consideration of hereditary or genetic comparisons.

There have been other cases cited on here over the past 4 years or so but nothing proven.

I wish your Gran the easiest of paths and your family peace of mind. 🙂

Dai.

[PerkymiteParticipant]

Hi Lisa, Sorry to hear about your Dad, 56 is so young for this Cancer.

Since 2009, when I was diagnosed, this subject has raised it's head several times. From the posts "the Consultants" seem to firmly place themselves in the non-hereditary camp. Whilst Patient's raise patterns within their families. It could be that we the Patients are just not seeing the big picture i.e. off 4000 diagnosed Myeloma patients in the UK per year how many have a hereditary link? I do not think there has been a definitive study of this and perhaps it may by be something that Myeloma UK could tackle?

The other point is that I think everybody is now noticing how Cancer is rearing its ugly head more and more nowadays. The big killer in my father's day was Bronchitis.

Kind Regards – Vasbyte

David

[tomParticipant]

Hi Skyblue

I am sorry to read your Grandma has been told she has MM and I hope the treatment is kind to her.
I also think this MM stuff is passed on I have told my three sons if they have bone pain go to Dr and tell them about Me and Ask for Blood tests.

Good Luck to you and your Grandma.

Love Tom Onwards and upwards x

[VickiParticipant]

Hi sky blue

So sorry to hear of your news and your grans recent news. I truly believe this mm is genetic. I read and article about 18 months ago that talked about mm being potentially genetic. It's a truly horrible condition….I heard an interview on radio two today. Lord saatchi I think it was. He was quite downbeat about the progress for treating cancer. However we all need to truly believe there's a cure there.

I'm with Tom….keep an eye on it.

Best wishes

Vicki and Colin xx

[dawnParticipant]

Hi there
I have just been diagnosed but I truly believe there is a link with my mum having lupus and myself with mm. I am 51 and in a very unsurreal sate of mind at the moment
Dawn

[Skyblue1Participant]

Thank you very much for your reply Dawn,

I am sorry to hear about your diagnosis. I also understand the surreal feeling as life sometimes does not feel like it is your own but like you are in some sort of dream.

There is some research regarding links between people developing lupus and developing some forms of cancer, and although this is in a single person, it surely suggests some form of a link!? I'm no medical expert but my life seems to have been spent for the last 3 years understanding myeloma and the associated topics!!!

I dont want to sound nosy or pry, and feel free not to answer if u like, but just wondered what treatment you were having.

Remain positive and take care

X

[Skyblue1Participant]

Thank you to everybody for your replies to my message. I would like to reply to you all individually but I am unsure how to do this! I can't seem to link my replies up to the person I want to!

I will certainly be looking out for any if the signs of myeloma from now on in all my family members. Does anybody know if you can routinely request the blood tests on the nhs it whether I would have to go private in order to do this. How have your children gone about this Dai?

Michele, I also feel like it falls on deaf ears and I am constantly told that it is just pure coincidence, but there are so many cases on the Internet and in medical journals which show genogram a identifying family members. I have also thought like Perkymite points out that the one case out of many families is only a small minority. I also cannot help thinking that a link is yet to be discovered by the medical professionals authorised to conduct such research.

Thank you to you all for the best wishes passed on. Each of you will know how much myeloma affects the lives of those around you.

Take care
🙂
Xxxx

[tonyfParticipant]

Dawn.
So sorry to read of your diagnosis, not the place that you really want to be!
People here are all in various stages and are more than willing to share help advice and experiences.
If you feel like it let us know your treatment, don't wish to pry but maybe we can be of support.
Regards
Tony F

[sanParticipant]

Hello Dawn, just wanted to send good wishes to you, take care, and i am sure that you will benefit from the help on this forum as you make sense of what is happening to you and your treatment options, San x

[ellenModerator]

Good morning, I hope you don?t mind me responding to this topic, it is a question that is asked very commonly and I hope I can clarify some things.

Unlike some other cancers and diseases, like cystic fibrosis or some forms of breast cancer for instance, myeloma is not caused by a single inherited gene. However, people do inherit certain sets of genes which may make them slightly more susceptible to myeloma, but additional environmental factors are needed before the cancer develops. Unfortunately, at present we don?t fully understand what sets of genes these are or what additional environmental factors these might be.

Studies have consistently shown that the risk of developing myeloma is elevated to between 2 and 4 fold in close family members. These studies involve looking at information in cancer registries, census information, death certificates etc. This information is brought together to produce epidemiological data. This kind of data is used to spot patterns in health and disease amongst a population. The largest study to date, involving 11,752 myeloma patients diagnosed in Sweden between 1958 and 2002, showed that there was an increased risk of 4.25. Another study from the Utah Cancer Registry in 1,354 patients also showed a small increased risk in close family members.

Unfortunately, screening or monitoring is still a long way off until more genetic variants are identified that correlate strongly with myeloma.

It needs to be stressed that the increased risk for myeloma family members is still a very low risk and is much lower than the general risk in the population for developing other chronic diseases such as heart disease or other cancers.

I hope this helps but if anyone has any questions or would like to talk anything through then please don?t hesitate to get in touch on the Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk

All the best

Ellen

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