Category Archives: myeloma questionnaire

Mac ‘n Cheese

Last Tuesday I realised I was really craving a particular food item, not one I eat much and in fact I couldn’t actually recall the last time I’d eaten it.  Macaroni cheese.  I looked on the menu, the menu from which my regular menu selection for lunch and tea were cream crackers and spread cheese, and scoured it unsuccessfully for macaroni cheese.  So my Auntie Ann brought me something in.

The following morning when the catering assistant (CA) came round to take lunch orders and produced a NEW menu I said…

‘Cheese and crackers’.

CA: ‘It’s new!’

Me:  ‘As in – it’s been reprinted with Autumn/Winter 2011/12 on the front?’

CA:  ‘No, there’s new stuff on it such as brunch.’  (This turns out to be a somewhat dubious collection of items that may once have been on a shelf near items that would usually be encompassed by a full English breakfast.)

Me:  ‘Mmmmmmmmm.’

CA:  ‘Right, well you can have them for your lunch on the basis you have to order something off the menu for your tea.’

Me:  ‘Okay.’ – thinking ‘hehe I should be at home anyway’

On B’s shopping list for Thursday morning were the relevant culinary items but of course I felt just a tad like not making in for tea.  So on Friday after leaving the Royal we called at a shop opposite and I got a frozen mac and cheese (I believe that may be the US terminology) and it sucked.  Come Sunday night I felt well enough to give it a whirl, well I felt well enough initially but then it took me ages but ended up dishing it out while I had a sit down. This too sucked.  I think I may have just been too tired to enjoy it as B said it was fine – even though he’d not wanted it in the first place.

So yesterday, when I felt properly hungry for the first time in ages, I thought what the heck let’s give it a whirl – I can always get something brought in.  I didn’t know what to expect especially considering the way things seem to be heated up I expected something paler looking than I am.  However it arrived with a definite colouring of grilled cheese colour to the top.  I tentatively poked it with my fork and then gave it an experimental stab (nothing seemed to be moving) and them I ate it – I ATE IT ALL!!!!!  The first hot meal at the Royal that I have ever eaten – actually the first meal as I couldn’t even make it through a salad.  The addition of yellow mustard seeds was, I thought unusual and although visually pleasing they’re a sod when you get them stuck between your teeth.  It was pointed out to me by Auntie Ann that if I wasn’t such a smart alec I could have had it last Wednesday.

I had more today but it was slightly more, I’m gonna go with set, and as the catering assistant said ‘You can have too much of a good thing’ – so tomorrow we are entering the wild world of haddock fish cake with cheesy wedges.

And now for the non food related stuff – I’m still tired but generally not feeling unwell as such, I’m eating more, I’ve done some knitting but it’s lace and I really need to concentrate so it doesn’t mix well with visitors, needing a nap or getting approximately 350  antibiotic infusions a day or rather seemingly continuous.  The ultrasound on my heart appeared okay – the doctor hadn’t seen the report when he saw me earlier today but the radiographer said to me ‘I’ll do a report.  Everything looks fine but I will look at it in more detail later.’  He still thinks it is an infection but honestly doesn’t know where, he’s going to discuss it with a microbiologist and there may be the need for a interesting little test involving a camera down my throat which would take a more detailed ultrasound of my heart – there’s something to look forward to – so let’s all say it together SEDATION.  

Why’s Africa not RED?

Now I’m able to assimilate information a little more betterer following my SCT I’ve dipped my toe back into the waters of the causality of MM and going back to my posts here, here (not so much) and here leads to the above title from looking at the following information…

MM per 100,000 both sexes

MM per 100,ooo female

MM per 100,000 male

This information is available in a more fetching selection of colours but ‘Why’s Africa not a slightly darker shade of green?’ doesn’t have the same ring.

I’m moving to Belize once I’ve confirmed we still own it!  (We as in the UK not B and I – I think I’d know off the top of my head if we still owned a country SCT or no SCT!!)

Myeloma Questionnaire 3

I think all things considered we may as well do our own questionnaire since I don’t think there is one circulating at the moment in the medical profession either here or in the US. Gloria spoke to Robert Kyle who is apparently very nice. He said there is no one factor causing MM. Maybe out of 100,000 people you might find 6 that have the same cause. As far as chemicals, no connection has been found. Even those exposed to the Atom Bomb had very slight elevation in odds.

However these are the things I have come across.

Ankylosing spondylitis

Inflammatory illnesses

Monoclonal gammpathy of unknown significance (MGUS)

Pernicious anemia

Some viruses

Black ethnicity

Gender – male

Losing weight (potential release of toxins stored in fat)

and

Obesity (you just can’t win)

Older age group

First degree relative with myeloma BUT also rather than herediatary genetic susceptibility can occur whereby one person exposed to a certain chemical develops myeloma another does not

Paracetamol (acetaminophen)

Pesticides

Petrochemicals

Radiation

Work Related – Even if any of these occupations are associated with increased risk, there must be other factors that dictate why one person develops myeloma and another doesn’t.

The petrol or oil industry because of exposure to benzene

Farming because of exposure to some pesticides

Woodworking or the leather industry

Painting and decorating

Hairdressing, because of exposure to hair dyes

Rubber manufacturing

Now my personal opinion

I can easily conceive that it is a number of factors that contribute – I get migraines, nowhere near as many as I used to funnily enough but couldn’t identify one particular cause other than missing sleep. Sometimes a strong cheese would cause one other times it wouldn’t. However if you have a scale of one to 10 with one being no chance of headache and 10 being migraine then sleep may count as a nine and cheese a one = migraine, with other triggers laying in between. Maybe myeloma works on similar lines.

At the time I was dx my own consultant, in a talkative mood, did say that he was seeing a spate of patients in their forties which would lead me to consider an environmental factor.

From what I can gather none of the studies so far have proved anything substantially and are a little nebulous at best (I’ve always wanted to use that word in a proper sentence), so let’s find out.

If you have any other suggestions let me know and I’ll draft up a questionnaire for discussion.

I was initially thinking something along the lines of

Age dx

Year dx

Places lived and years

Any other ailments

Chemicals

Medications (not prescribed after dx)

Job/Occupations

Blood relative with myeloma

Any infections/viruses

Inflammatory illness (this was from Prof Gareth Morgan and seems a little vague to me)

Any other info felt relevant

On Another Note

Four studies have shown a reduced risk of myeloma in people who eat a lot of fish. A smaller number of studies have shown that eating cruciferous vegetables (such as broccoli, cauliflower and cabbage) and green vegetables may reduce the risk of myeloma. Looks like the childhood advice about eating your greens was right.

Myeloma Questionnaire 2

With one thing and his mother, I’ve got bugger all done this week, including actual paid for work – it’s a good job my employers are being very good.

However following another email to Gareth Morgan yesterday, I’ve just sent one to Dalsu Baris at the National Cancer Institute so I’ll let you know.

I’m off now for a mother in law free day in Liverpool for my stem cell transplant appointment at the Royal.  Otherwise she may have stayed over last night as hinted at by saying that when Bernard picked me up she could have her nightie ready.  At this rate I’ll be glad to be spending time in an isolation room.  Ahh, stem cell transplants fortunately they provide a wonderful reason why she can’t come and live with us even though since Monday she has now suggested it five times!!!!!!!!!!!!!!!!!!

We’re going to have lunch and visit a fabric shop (Bernard always thinks that once I’ve picked something up that’s what I’m buying and that’s all I’m buying) and I’m going to get LOTS and LOTS of things.

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.

____________________________________

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?