Myeloma Questionnaire

I’d like to say I don’t know how I do it but I do.  I’m extremely inquisitive and completely unafraid to ask a question even if it makes me look stupid.   So…

Statistically I should be an old fat meat eating black man who’s spent loads of time paddling in petrochemicals.

Instead I’m young, I think, female, white, was slim, fit and am still otherwise healthy, I was vegetarian for about 10 years and vegan for about six of those and even after becoming a carnivore again didn’t consume a lot of meat.  I used natural products for cleaning and body care, organic cotton bedding, water based paints, no weed killer in the garden, bought some organic veg, didn’t use anti-perspirant on a regular basis (erm, maybe I shouldn’t have confessed that one), didn’t have anything with artificial sweeteners in, avoided hydrogenated vegetable and trans fats and still don’t own a microwave.  Oh, and I hardly ever drink alcohol.  From that list I think I now know why a friend used to address my birthday cards ‘veggie hippy weirdo’.

Anyhoo being quite interested in stuff like this and after reading that Robert Kyle a myeloma expert said a cure would be easier to find once the cause was known I figured there would be a questionnaire somewhere on general lifestyle and exposure to certain substances for people with myeloma to complete.  I looked but couldn’t find anything on the web except a study relating to aspirin and paracetamol, so I sent an email to the nurse at Myeloma UK.  I thought it would be easier to show the emails.



I read from Dr Kyle in America that a cure would be easier to find if the cause was known (I’m paraphrasing) and since it’s thought that one of the possible causes is petrochemicals is there a questionnaire anywhere about exposure to such substances that myelomaites can fill in.  Particularly us younger ones since it would be easier to identify potential substances as we haven’t had as long to build up a varied collection.

I figured if I’d thought of this there must be one out there somewhere. I have searched on the web but can’t find anything.  If there isn’t one could I start one, well I could but what I mean is would it be of benefit even if it was an unofficial one and what would the questions be.

Thanks for your time.

Kind regards


Dear Paula

Despite much research, the exact cause of myeloma remains unknown. There are thought to be multiple trigger factors which may increase the risk of developing myeloma. As you know these include exposure to certain petroleum-based chemicals, some pesticides, high doses of radiation as well as some viruses. Myeloma is likely to be the result of several factors acting together, however, and in many cases people who develop myeloma have not been exposed to any of the environmental factors mentioned above.

 It is worth bearing in mind that research looking at the cause of myeloma is all from epidemiological studies which only determine what factors are associated with disease but can never prove that they cause the disease, nor if you are exposed to it you will definitely get myeloma. As previously mentioned in myeloma, many other risk factors have also been suggested including age, gender, race, family history, MGUS, radiation etc so petrochemical exposure is another in a long list. Unfortunately the answer is no one knows what triggers myeloma.

Professor Morgan at the Royal Marsden Hospital in Surrey carries out research on the genetics of myeloma. He is an internationally recognised clinician with a special interest in the treatment of myeloma and associated blood cell cancers. I believe one of his projects looking at the causes of myeloma, involves a lengthy questionnaire which includes the history of the patient’s exposure to certain substances.

I hope that this has been of some help but please do not hesitate to get back in touch if you have any questions or would like to talk things over. I can be contacted directly by email as before or on the freephone Myeloma Infoline, the number of which is below.

 Kind regards


So I spoke to Professor Morgan’s secretary and she suggested I email him.  So I did.  Apparently they did compile a questionnaire but did not pursue it and it’s now with an American doctor but it asked ‘a few specific questions about benzene, the immune system and other imponderable questions’ and he wasn’t sure it was much use. 

 So does anyone know of one out there or think one would be a good idea? 



8 responses to “Myeloma Questionnaire

  1. Hi Paula, what an utterly wonderful idea to do a worldwide questionaire. Lorna and I had been wondering the same thing and were suprised it hadn’t been done. Cadbury’s have surveys to discover why Wispa doesn’t shout at the punters, so why doesn’t anyone seem to want to know what might increase the likelyhood of getting the Myeloma Curse?????????? For example, where did you paddle in your woollen trunks that youre mom knitted? Or more seriously, did you live by a pollution source or big electric pylon, or even did you have nylon sheets????? As daft as it might sound Lorna’s cat in the seventies died age 3 from mercury poisoning because it would only eat pilchards.
    Maybe the health secretary can help…no hang on…he’s healthy and maybe until his family are touched by this problem we may get the same reaction as your excursion into the space of a Myeloma specialists inbox.
    Enough of my moaning.
    P.S. If you would like some help raising the issue or compiling a questionaire, we would love to stick our oar in. x

  2. Can we get our hands on the research he is referring to when he says, “Despite much research, the exact cause of myeloma remains unknown.”? I have not been able to find any of this research.

    How about we create our own list! I recently embarked on a journey to collect the stories of MM patients and go figure that the first to responders who both raised on farms and around pesticides/insecticides.

    I am not a scientist, but it 7th grade I was taught that first you come up with hypothesis and then you start making observations. I think collecting stories from new diagnosed patients should provide insight to any risk factors. Just mapping where MM patients were born and raised could provide some insight.

    Myeloma is not a fluke and I believe the true cure will only come about when we know the cause and remove it. Otherwise, each year tens of thousands of people will get hit with the devastating news. That just can’t be acceptable for future generations (our kids’ kids).

  3. I am an 80 year old woman who found out 6 months ago I have Myeloma. I would love to contribute in anyway to this questionaire. I am not to computer literate but will be happy to help in anyway. I am going to a top oncologist at MD Anderson and am “smoldering” at this time. I have been told it is not hereditary.

  4. I am not completely sure about that heredity thing. I have also had an MM specialist who is very well know in the U.S.
    tell me that MM is not hereditary. While it may not be passed down as much as other diseases or in the same genetic way, this same MM
    specialist has several patients whose parents also had
    MM. I have met several myself both in person and on the internet. One woman has her family taking part in a study that is being done somewhere(I forgot where) to try to find out why MM is found in more than one family member.
    For such a “rare” cancer, there has got to be some reason
    why it shows up in someone whose parent had it. There is some research that there are some people whose bodies cannot neutralize toxins as well as others and maybe this
    can be an inherited trait. I don’t know the answer but I sure hope it’s not very common. Till then, I keep our daughter away from chemicals as much as possible and
    luckily, I always did. (There are some times when being a worry wart is a good thing.)

  5. No chemicals but grew up with 3 heavy smokers. Any connection? Dr Robert Kyle has specialized in MM since 1950. Any emails to him re questionaires?

  6. Gloria Libman

    I emailed Dr Kyle and asked him if we could ask him a general question and he sent me his phone #. Shall I ask him about a questionaire or is there a more important question?

    • Well, I would like to know if there is any questionnaire out there that could be circulated, the only more important question would be ‘Can I be your daughter in law?’ I’ve spent the last 5 days telling my mother in law which pills to take when (she’s 82) and you’ve emailed THE man on myeloma. I don’t know you, yet, but I like you already.

  7. You are most welcome to any family history we have regarding Hamada’s MM Should you decide to start a survey. Best Wishes

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