Post 6 – What Causes Myeloma?

I would lay a bet that this is probably one of the most common questions that is asked when people are diagnosed with myeloma – that along with the “Why me?” question. After the initial shock of a diagnosis, I think it is natural to want to understand exactly what has caused such an upheaval in your life. There is still a massive fear of what is to come, despite the fact that the future is starting to feel a little brighter for myeloma patients (more to come in another post). We are still a few years at least away from the major changes that are being talked about these days….and for some patients with more aggressive myeloma than me (touch wood) that can be a scary prospect.

I can honestly say that I haven’t really ever asked the “Why me?” question….but in the early days, I did wonder whether my actions etc could have caused me to have myeloma. Funny isn’t it that human nature seems to want to be able to pin the blame on something rather than perhaps accept that some things just happen to us. Part of why I have chosen to write this post is because it frustrates the living daylights out of me when people close to me drop into the conversation that maybe, just maybe, I am to blame for my cancer. That if I had led a more puritive lifestyle, not smoked when I was younger, not drunk as much etc, that I might not have myeloma today.That said, they haven’t been brave enough to say that to my face….perhaps they know that there could be serious repercussions. I do hope that if they do ever come out with it directly, I will be able to hold my nerve enough not to let loose, but the day is getting closer that this may happen. They skirt around the issue by talking about cancer in general, but I am pretty clear what they are getting at . Of course, it doesn’t really change anything if my behaviour in the past has caused my myeloma. I still have it. I can’t change that. So what good does it do anyone? I believe it all comes down to some people feeling that is ok to be permanently making judgements on other people’s lives and whether they are behaving in a way that is ‘right’ or ‘wrong’ (although god only knows who is in a position to make that distinction).

 

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To be honest I’ve had enogh of it at the moment. None of us are any better than anyone else. We might not always agree with other people’s behaviour, and we all have the right to have opinions, but sometimes with some people, it feels like they are always judging the people around them – and often when their own life isn’t that perfect either. Some people just can’t help but share their opinion. There are probably many things that go through my head  about the people around me….but the majority of the time, I keep them there because I know that I’m not perfect…and often not right in what I think! For anything I struggle with about others, I know they probably have similar frustrations (hopefully about different issues) with me! Anyway, this post wasn’t going to be quite as personal as this, and I seem to have digressed slightly.

So, what is thought to cause Multiple myeloma? The general view is that it isn’t yet known what causes it. Multiple myeloma is known to start with one abnormal plasma cell in the bone marrow. This then multiplies and because the cancer cells don’t die like normal cells, eventually they take over and crowd out the healthy cells. Researchers are still studying the DNA of plasma cells to try to understand what actually makes a cell into a cancer cell. Nearly everyone with multiple myeloma seem to have genetic abnormalities in their plasma cells that they think contributed to the cancer, whether it is a defect in the chromosomes, extra copies of other chromosomes or missing parts of chromosomes.

Now the question is what causes those abnormalities, and perhaps even more, how to rectify those abnormalities before they cause issues. It is thought that myeloma may be caused by a mixture of genetic and non-genetic (environmental) factors. This may explain a little bit about the fact that they don’t currently say that it is hereditary. If I’m right, my children may be genetically more predisposed to having myeloma, but unless they have a certain trigger, it is unlikely to kick off for them. I think the understanding on this is changing all the time. When I was first diagnosed, they were saying that it wasn’t genetic at all….tough to hear that it might be….my faulty genes could cause a future of difficulty for my family….anyway, digressing again!

One of the key potential ’causes’ seems to be exposure to chemicals, pesticides (people in agriculture) and solvents (petrochemicals), as well as those who work in metal processing and textiles. There is much talk about the fact that many firefighters from 9/11 have suffered from the cancer…far more than would normally be expected to show symptoms. There is also an increased risk for those living near to or working in nuclear power stations. So it is likely that research will continue to focus on finding out more about what can trigger people’s myeloma – by working out how this all happens, hopefully they’ll find more about how to cure it too (a big reason why I continue to fundraise for Myeloma UK)

And just for anyone else who might think that I have brought this cancer on myself…..a study in 2011 in Boston suggested that those people who drank and smoke, had a lower risk of developing myeloma than those who didn’t…..food for thought!

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Finally onto 40 Challenges B440 – Challenge No 6: Do a pub crawl around 40 pubs in 40 hours I decided that the original challenge of having to do a pub crawl around 40 pubs in a day was nearly impossible so I have amended it slightly to allow for a few breakfast pubs the following morning (a big fry up springs to mind!) I’m hoping that once the hangover has moved on, the extra few hours will allow me to visit the additional pubs and make it a slightly more enjoyable task than having to get 40 pubs in 18 hours….3 in an hour….and pretty much impossible if you include travel too!

I still need to work this pub crawl out and am hoping to write to a local brewery and see whether I can get them to help me to organise this….it would be great if we could turn it into a proper fundraiser rather than ‘just’ a pub crawl! If I could get each pub to donate a minimum of £4 to the challenge, we’d make over £120….and for every pub that provides me with a free drink I will commit to donating £1 for a soft drink and £2 for an alcoholic drink – I’d hate anyone to think I was doing this for a free day out! The plan is for the crawl to be around the High Wycombe area as this means that I can get support more easily, and hopefully also means that we can have support at the various different pubs! This will encourage the pubs to buy in to the whole concept as they will hopefully get extra business from it.

So if anyone has any contacts with perhaps Rebellion brewery in Marlow, or another Buckinghamshire based brewery please let me know if you can help! I would also love to hear from anyone who fancies organising the Challenge….as you can probably imagine, trying to sort out 40 of these is pretty labour intensive and so far I’ve only got 3 fully ticked off on my list! I’m putting together a list of ‘drivers’ too so advance thanks to Fintan and Rakhee who have already said that they are happy to drive….hopefully we can have a few more to help in the long run.

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If yo would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070 e.g ‘DEBG99 £40′ if you want to donate £40

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14 Comments

Filed under Myeloma, Research

14 responses to “Post 6 – What Causes Myeloma?

  1. Heh what’s all this defendng yourself girl !!… Go and get drunk big time, if Keith and I lived nearer we would be so up for it, obviously dependant on Keith being able to actually walk that is 😳 … It’s got nothing to do with how you live it’s just a random selection of bad luck x x x if I can help in any way just let me know

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    • Well you could always come anyway Jo….watch this space 🙂 Treat it as a weekend away and come and meet us for a drink at some point…and we can tell you the nice pubs to meet us at! Would have a car for some too so am sure Keith at the very least could hop in with me 🙂

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  2. There’s always at least one isn’t there, who not being able to face the health roulette wheel might stop at them, turns it round to blame you – you and your situation must somehow be easier to dismiss. Keep fighting – you’re living a fuller life than them already. And I suspect you have the fab friends you deserve. Hugs xx

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  3. Very interesting blog and insights. My father, brother and now I have smoldering myeloma. We all worked on the farm but dad worked much longer and used more chemicals!!! No one knows if it is hereditary or environmental definitively all I know is my families experience. That is why I am in a long term study at UAMS in Little Rock ,Ark. to determine genetic factors and help my 2 children and late brothers 2 children.

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    • Wow Keith…I’m so sorry about your father and brother….
      Amazing that you are doing the study…I’m involved in DNA testing too, although I think it is a by-product of treatment etc rather than that I’m specifically doing long term research on the hereditary aspect.
      Good luck with it all…I think we all need some answers.And good luck for you…I hope you continue to smoulder for a long time yet!
      Deb

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  4. Hi Deb! I’ve been wondering about writing a similar post myself, saying very similar things… you’ve saved me doing it 🙂 I think part of it is people unconsciously afraid of illness themselves and trying to find a way to distance themselves or rationalise it so that it happens to ‘other people’. Plus so much press about some lifestyle related cancers which is necessary to a point – but I’m fully with you on the ‘not judging’ thing anyway in life… Life is complicated and we don’t all start with the same set of issues to deal with, and can’t live perfectly (who does?). I’ve also met in the last year a friend also young who was a nutritionist and has myeloma, read online people who’d had every single healthy/specfic diet under the sun, very physically active etc, all with myeloma.

    But why I’m posting is that one thing you might like to know as ammunition also for future conversations is this: “The earliest generally accepted example of a malignant neoplasm was reported in a Neolithic skeleton (c. 4000BC) from Austria displaying signs of multiple myeloma”. (There was recently a BBC article about a much older Egyptian skeleton that seems to have metastasised bone tumours – if you click through to the PLOS article that’s based on, you get the quote above and a reference if you want the full details!!).
    I doubt the caveman had the modern lifestyle issues they’re talking about, but he had myeloma… It’s been around a hell of a long time, and a lot of it is just random.
    Hope now sometimes you can shut them up with the caveman story 🙂
    Hx

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    • Thanks for the message Helga. I was so nervous of writing this post but it is great that I’ve had some responses that make me feel my point is fairly made. I LOVE the caveman story….I will definitely mention that one next time the conversation comes up! lol!
      I know in my heart what the truth is and that’s what counts. It just makes me sad that someone that close to me is actually thinking at the back of their mind, that I might be to blame for what I have. Sad 😦

      Take care and thanks for the post 🙂
      Debs

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  5. Hey Deb! hA! I wrote a similar post just a few weeks ago. However, I DID ask Why Me! Screw it though….I’ve got more important things to take care of than worrying. Good luck to you! Go kick some myeloma butt:)
    -Steph Holmberg
    Dx Jan ’14 IgG Kappa

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  6. Louise Adams

    Hi Debs, Dad has his sponsor money ready to send off to you by cheque, would you be able to pass on your address please? Thanks. Louise

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  7. Help! Going for tests. All so unexpected but that’s life I guess.

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    • Hi there. It is but if you do get a diagnosis of myeloma, it doesn’t have to rule you in the long run. Certainly doesn’t with me. Good luck though and I keep my fingers crossed that the tests are good!!

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