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.

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Hi

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

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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

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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?