[daisychainParticipant]

I would like to share this with you and I'd be interested to know if your hospital promotes / gives advice on "good" diet and nutrician and what sort of advice they are giving.

Quote from Myeloma UK "Diet and nutrition for cancer patients has, unfortunately, been a neglected topic".

My interest was triggered off by this Article and podcast

BBC Food – Cancer and diet: Why is nutrition overlooked?

Article By Sheila Dillon
Presenter, Radio 4's Food Programme

"..I was diagnosed with Multiple Myeloma (MM), a cancer of the bone marrow, in December 2011.

At every chemo session I was offered a white bread sandwich, a fizzy drink, and a chocolate bar or packet of biscuits.

Nurses told me that there was no point in worrying about what I ate. "Worrying" is not what I or any other patient wants to do…"

click here if you'd like to read more…
http://www.bbc.co.uk/food/0/22567354
and/or
Listen to Radio 4's Food Programme on Food, Cancer and Well-being on Sunday 19 May at 12:32 BST or catch up on iPlayer

http://www.bbc.co.uk/programmes/b01shstp

I dropped a note to the Myeloma UK helpline and this was their response.

"We were involved in the recent edition of the Radio 4 Food Programme on Diet & Nutrition and Cancer you mention as Eric Low, our Chief Executive was a contributor on the programme.

Diet and nutrition for cancer patients has, unfortunately, been a neglected topic. We and others are very aware that is an important issue for patients and hope to bring it more wider attention, particularly with healthcare professionals. We are currently developing Nurse educational programmes and one of the tutorials is on Diet and Nutrition. We also have an article on diet and nutrition in the latest issue of Myeloma Matters, our newsletter for patients…"

I too feel that diet and nutrition for cancer patients is a neglected area I'm being treated at the Marsden, Sutton under Professor Gareth Morgan. We typically get offered white / brown bread sandwich, concetrated fruit juice drinks, packet of biscuits, tea/coffee, low fat yogurts and fruit. there is little / no information visible on notice boards, leaflets on diet / nutrician (which is surprising given that it is a centre of excellence)

As a result, I have spent many hours surfing the net / reading books (and getting confused!) about what type of foods (ie eating more anti-imflammatory, low carbs, reducing processed foods, increasing Omega 3) ) that I should be changing/ including as part of my diet.

You may be interested in reading in this blog.

http://margaret.healthblogs.org/2013/05/20/cancer-and-diet-why-is-nutrition-overlooked/

[eveParticipant]

Hi Dawn

I read all the links and I must admit the one about the doctor,s how they die,is a well known fact,they take what is left of there life,and enjoy the quality,without the drugs,seems fare to me.

If you are looking at diets at this stage of Myeloma you are clutching at straws,for what ever time you have left,you should at least enjoy,eating and drinking what ever you like,I would be inclined to think,doctor,s. know best,that's why they choose,there own route,it takes a brave person to do it.
Some one said to me, there not scared of dying,just how they die is important. Eve

[daisychainParticipant]

Hi eve

It's really interesting to get other people's views of living with myeloma. I've had this disease now for 7 years and I definitely don't feel like I'm clutching at straws.

in fact more so now i feel that i am living my life to the full And on a Day by day basis and will continue to do so until I'm told that is it!! Incidentally I was told that 2 years ago!

so part of my fight is to adapt my eating habits (which incidentally weren't very good!) to strengthen my immune system to help fight the disease and give the treatment that is thrown at me the best possible chance of working, it also makes me feel that i have some control in whats happening

whats the saying nothing ventured nothing gained.

Best wishes

Dawn

[adminKeymaster]

Hi Dawn

This is a subject that interests me greatly and i certainly don't think you are clutching at straws. My feeling is that cancer Is greatly increasing among 'younger' patients and I truly believe that environmental factors and diet are a contributory factor. Multiple myeloma, i believe, is an umbrella term for many subsets of a blood cancer, some of which may have occurred because an individual has, through external factors including diet made themselves more vulnerable.

Fortunately, I've not had to experience hospital food so far, but I've not been offered any nutritional advice whatsoever. When I was diagnosed in February 2011and started treatment, I went gluten free. For the last year, I've taken green tea supplements. One medic who I greatly respect, is James Berenson. I read an interview given by him in which he said if there was one piece of dietary advice he could give it would be to avoid aspartame and saccharine. I used to drink a ridiculous amount of diet coke and have taken artificial sweeteners in my tea for so many, many years. I have switched to Stevia sweeteners and have only the occasional diet coke. I also read a while back, in an Italian study that those patients who eat meat and drink alcohol, tend to do better. How fortunate that I am a huge carnivore and adore white wine!!!! 🙂

James Berenson, in a recent column also mentioned the Budwig diet. He basically said that it was definitely worth giving it a go to the extent of having cottage cheese, flaxseed oil and berries for lunch. I know there's more to it than that, but I'm giving it a go for my lunch from next week.

i reckon there's nothing to lose in trying alternative dietary strategies in conjunction with enjoying a little of what you fancy – I think it gives us some control. This also coincides with me looking at buying and eating more organic food. For me, it's a win-win situation. I have a 7 year old daughter. I want her to eat better than her mummy did.

T x

[eveParticipant]

Hi Dawn

May be its the age factor,although a larger lady,my upbringing ,was meat and two vedge healthy eating,a generation thing,the only thing I used coke for was to clean my gold rings,and sugar.is none existence in the house,same as ready meals,every thing is always fresh,biggest down fall is wine and cheese.
When you are first diagnosed,you should have received a booklet with what food is appropriate ,it's mainly a healthy balanced diet,but reading sharply,s post,I can only assume,it's the fact I am older,I often look at what people buy,and wonder do people realise what goes into these packets of food.
There was an article in the Daily Mail,were scientist have discovered in people's DNA reasons why some people are more likely to get some cancers.
Slim weight is 66k at the moment,so I am grateful ,if he ask for any type of food,but I am now grateful for the chemical mix of shot which contain 150 cl in a mouthful. Eve

Look at Tom,thinking of putting Slim on the same diet!!!

[MicheleParticipant]

Hi Dawn

I'm so pleased that you and I have the same attitude and thoughts when it comes to diet and cancer.

No matter what anybody says, I've always thought that diet is a very important part of supporting the immune system and consequently the whole body. Any help I can give my immune system to fight the MM can only be a good thing.
The only question is; what to eat?

Well, my husband's done a lot of research and I've also taken advice from my specialist on the subject.

Generally speaking, my specialist has suggested a good balanced diet, but did mention one thing that has definitely benefited some of her patients and that is blueberries. She had a patient with leukaemia who was given 2 months to live. He put himself on a diet high in blueberries and blueberry juice as a last resort. The results 2 years on spoke for themselves. He's still alive and kicking.

Something I've been eating more of this year after reading about its affect on cancer cells is rhubarb. I have no doubt in my mind that it's helped with my bone pain. 3 months ago I was having a lot of trouble with my left arm and it hurt to lift it. After eating rhubarb regularly through the summer, I now have full mobility back and no pain at all.
Rhubarb is very high in calcium and is also acidic which means that the calcium is readily absorbed into the body to be used for bone building.

I also eat plenty of nuts, dried fruit, turmeric, and the usual suspects!

Yes, there are lots of quack ideas out there but I do think that approached in a sensible way, what we eat does have an impact on how our bodies respond to illness.

Better to go into war with plenty of weapons rather than a defeatist, attitude.

🙂

[adminKeymaster]

Hi Michele

Very interesting story about blueberries. I knew they had antioxidant properties, but this is something else! I'm not a big fan of blueberries, but I will certainly be eating them now – thanks for the heads-up!!

Tracey x

[MothasParticipant]

There's very little clinical evidence to suggest that diet plays a role in the development of cancer but a healthy diet rich in fresh fruit and veg, that avoids processed and sugary foods won't do you any harm at all and will certainly strengthen your immune system.

A useful summary of the various claims and approaches can be found in [i]Anticancer: A New Way Of Life [/i]- by David Servan-Schreiber who was a medical practitioner who developed brain cancer. To be honest I've no idea if any of the approaches work or not but I have tried to follow some of the guidelines and from a psychological point of view it does give you a sense of control.

I do agree with Eve that there's no point in following wacky diets that make you miserable but many of the suggestions and approaches use good fresh food and delicious herbs and spices that I'd be inclined to eat anyhow.

all the best

tom

[dickbParticipant]

Well. I'm stuffed then. I went to school and lived around Melton Mowbray so Pork Pies and Everards Old Original along with copious amounts of Branston pickle probably left its mark.

Joking aside, diet is important and we do know that certain food additives have a negative effect on health – Food colouring, Caffeine, Hormone injected beef etc. The thing to note is that often poor cheap processed food is not neccesarily on the tables of middle income midle class people but genreally purchased by the poorer in society. MM affects all levels of society.

Another point that we must take into account is the massive increase in life expectancy since the start of the 20th Century. Just since 1960, people in the states are living 10 years longer and in some countries the increase is more dramatic. Our lives have changed so much sinced the 1950's, with new technology and processes going to food processing. We also had all the nuclear testing in the 50's and early 60's which led to an increase in radiation in the atmosphere. I don't have the knowledge or the ability to say what is causing an increase in MM amongst younger people but I think it worth noting that often no one thing causes a problem but an accumulation of little things build up leading to a bad conclusion.

As for food, We still don't know fully what's being put in food stuffs – processed food for example – any one for a slice of Horsemeat lasagne?
We still can't guarantee that the fresh produce we buy is really as fresh as it should be, the Americans like irradiating certain fresh foods to extend its shelf life. We cannot all afford to buy organically grown food from the local farmer with all the relevant documentation, so what do we do? We can only carry on as before, read labels, make an informed judgement based on the information out there. My own opinion is that good healthy fresh food is actually cheaper per calorie, more healthy and quicker to prepare than processed foods, there is no real need to buy the stuff, but I am turning into a Grumpy Middle Aged Git.

[john62Participant]

Hi
Just a few questions

Dose cancer fined it hard to survive in an alkaline body.

Do we kill of most of the goodness in cooking our veg over
30 degrees.

And is this a great discussion.

There's more.

well done dawn

Got to go and lay some concrete.

john

[MothasParticipant]

This Ted talk may be of interest:

http://www.ted.com/talks/william_li.html

William Li presents a new way to think about treating cancer and other diseases: anti-angiogenesis, preventing the growth of blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that cut off the supply lines and beat cancer at its own game.

[eveParticipant]

Hi John

Research in to cancer cells and alkaline diets,are well posted on the net,but also not very advisable ,as it not only effects cancer cells,if the solution was diet,Myeloma would not be a killer disease it is.
As for loosing goodness from cooking veg,the answer is yes,if you have a good stomach for juiceing there is a book on green juicing,cannot remember the author ,but again try the net:-)
Blueberries are best juiced,I would advice any one to buy a juicer as a good way to get full goodness from most fruits and veg.

Dawn from previous post I deemed you to be in the high risk myeloma group,as ex refractory ???? And lucky enough to be on medication that's not available to NHP!!! 7 years with Myeloma,and never once been spoken to about you diet.May I suggest a practical guide to living with and after cancer.DIET AND CANCER,from Mac Millan Cancer Support,it gives you everything you should have been doing in the last 7 years,to help your body.Eve

[daisychainParticipant]

Hi sharpy

Thank you for taking time iut to reply to my post. I have also heard about the budwig's diet I note however that Nhs mentions the diet which on one hand is promising but on the other hand doesn't really encourage it ?

Here's link to page
http://www.nhs.uk/news/2012/09September/Pages/Organic-food-wont-make-you-healthier.aspx

You might want to take a look at this guy you tube etc as i hear he is now causing a bit of a stir with his atest book. mind you I read his latest book and it did send me into a bit of a negative turmoil as my thought process to keep me positive is about new drugs coming onto the market!!!

Ben goldacre

Goldacre is known in particular for his "Bad Science" column in The Guardian, and is the author of two books, Bad Science (2008), a critique of irrationality and certain forms of alternative medicine, and Bad Pharma (2012), an examination of the pharmaceutical industry, its publishing and marketing practices, and its relationship with the medical profession.[3] Goldacre frequently delivers free talks about bad science—he describes himself as a "nerd evangelist."[2]

http://en.wikipedia.org/wiki/Ben_Goldacre

I will certainly spend som time reviewing beresden and his views – thank you

I totally agree from where you are coming from I want to eat more healthily and excersise more, my hubby is doing the same and am encouraging my kids who are n 15 and 20 to do the same !!! After isn't this what the government is trying to do regardless of whether or not you have myeloma..

Finally I would like to share a copy of my email with you the response to my question at the marsden about nutrition and hope it will help you.

"…Dear Dawn Watts

I received your message via the Royal Marsden website and was interested to read your comments.

We have a number of booklets on diet available in the hospital and it is up to each department to decide which ones they display but they are all available in the PALS office. The two main dietary booklets are Eating Well when you have cancer which focuses on problems with eating such as a poor appetite, taste changes, weight loss etc. and an After Treatment booklet which looks at diet and lifestyle changes after treatment carrying the well known ‘healthy eating’ messages. Here is a link to these booklets

http://www.royalmarsden.nhs.uk/cancer-information/patient-information/pages/booklets.aspx

Patients also have access to Information booklets from Macmillan, some of which are aimed at addressing dietary problems and questions and for people who are at the end of treatment we would recommend the World Cancer Research Fund information as they have an excellent booklet on Dietary Advice for Cancer Survivors.

http://www.wcrf-uk.org/

As you will see from the booklets that the information we give has to accommodate all patient needs from those who have lost a significant amount of weight and are malnourished (which is over half our inpatients) to those seeking weight reduction / healthy eating advice. Information on the latter is not always suitable for people who are lost significant amounts of weight or have difficulty eating and therefore a whole range of information is required to meet these varied needs.

I hope this answers your questions on the information that we have available. We are currently working on a series of posters which will help patients identify which therapists and services are available in the hospital to encourage patients to ask to be referred to these services, including to the Department of Nutrition and Dietetics, if they wish for more advice.

Do please contact me if you require any further clarification.
With best wishes
Clare

Clare Shaw PhD RD
Consultant Dietitian
Department of Nutrition and Dietetics
The Royal Marsden NHS Foundation Trust
Tel 020 7808 2819
Fax 020 7808 2336
PA Anne Mclean
Tel 020 7808 2810

From: website@rmh.nhs.uk [mailto:website@rmh.nhs.uk]
Sent: 15 August 2013 17:05
To: Patient Information Centre
Subject: Online feedback submitted

A message has been sent via the feedback form on The Royal Marsden website.

From: Dawn Watts

Concern or complaint? no

Message:

This blog I have placed on the Myeloma UK Web site.

I would like to share this with you and I'd be interested to know if your hospital promotes / gives advice on "good" diet and nutrician and what sort of advice they are giving.

Quote from Myeloma UK "Diet and nutrition for cancer patients has, unfortunately, been a neglected topic".

My interest was triggered off by this Article and podcast

BBC Food – Cancer and diet: Why is nutrition overlooked?

Article By Sheila Dillon
Presenter, Radio 4's Food Programme

"..I was diagnosed with Multiple Myeloma (MM), a cancer of the bone marrow, in December 2011.

At every chemo session I was offered a white bread sandwich, a fizzy drink, and a chocolate bar or packet of biscuits.

Nurses told me that there was no point in worrying about what I ate. "Worrying" is not what I or any other patient wants to do…"

click here if you'd like to read more…
http://www.bbc.co.uk/food/0/22567354
and/or
Listen to Radio 4's Food Programme on Food, Cancer and Well-being on Sunday 19 May at 12:32 BST or catch up on iPlayer

http://www.bbc.co.uk/programmes/b01shstp

I dropped a note to the Myeloma UK helpline and this was their response.

"We were involved in the recent edition of the Radio 4 Food Programme on Diet & Nutrition and Cancer you mention as Eric Low, our Chief Executive was a contributor on the programme.

Diet and nutrition for cancer patients has, unfortunately, been a neglected topic. We and others are very aware that is an important issue for patients and hope to bring it more wider attention, particularly with healthcare professionals. We are currently developing Nurse educa tional programmes and one of the tutorials is on Diet and Nutrition. We also have an article on diet and nutrition in the latest issue of Myeloma Matters, our newsletter for patients…"

I too feel that diet and nutrition for cancer patients is a neglected area I'm being treated at the Marsden, Sutton under Professor Gareth Morgan. We typically get offered white / brown bread sandwich, concetrated fruit juice drinks, packet of biscuits, tea/coffee, low fat yogurts and fruit. there is little / no information visible on notice boards, leaflets on diet / nutrician (which is surprising given that it is a centre of excellence)

As a result, I have spent many hours surfing the net / reading books (and getting confused!) about what type of foods (ie eating more anti-imflammatory, low carbs, reducing processed foods, increasing Omega 3) ) that I should be changing/ including as part of my diet.

You may be interested in reading in this blog.

http://margaret.healthblogs.org/2013/05/20/cancer-and-diet-why-is-nutrition-overlooked/

Website: http://www.royalmarsden.nhs.uk…"

Wishing you good health and happiness

Dawn x

[daisychainParticipant]

Thanks Tom for your feed back I too read David Anticancer: A New Way Of Life – by David Servan-Schreiber book and in fact he gave me the motivation to take a look at my diet!!!!

and through my research on other diets found that in general terms they support his theory and again I've recognised that all the stuff I'm reading is not "rocket science" as it's about "healthy eating" avoiding processed foods, foods high in carbs, fast foods all the stuff the government is trying to encourage to avoid obesity.

I've also noticed a similarity to the recommended foods for a type 2 diabetic. Going for a med type diet, using lots if herbs garlic turmeric spice (curcumin)green t, fruit veg, flaxseed, and definitely few wacky things but in general it all makes logic to me

I'm now trying to find some decent cook books to help me especially as I need to encourage my kids see them as " family meals" and not something wacky.

I've been trying to find celebs, doctors, dietician specialists who have myeloma as I think they would be a good source for how they are living with myeloma. 1 they have the money to access 1-1 expertise and of course on tap access to the experts, coupled with a medical background. So if you've found this out I'd be keen to know.

I'm also reading " a cancer survivors companion by dr France's goo hart and Lucy Atkins practice ways to cope with your feelings after cancer" even after 7 years of living with myeloma it has managed to give me a lot of motivational coping strategies

and as with you all this yes it has helped me psychologically which is definitely good for me and of course longer term for my kids

I'm also reading " a cancer survivors companion by dr France's goo hart and Lucy Atkins practice ways to cope with your feelings after cancer" even after 7 years of living with myeloma it has managed to give me a lot of motivational coping strategies

Wishing you good health and many thanks for the you tube link

Dawn

[daisychainParticipant]

Hi eve

Having spent the last few months researching I totally agree with you re packet foods etc!!!! It's such a crime that people less educated and on lower incomes aren't given the knowledge to help them understand this too and aren't in a financial position to go for fresh organic foods and the supermarkets still continue to sell cheap dodgy processed foods.

I wish you and your husband days filled with fun and manages to keep his weight stable.

Dawn x

[Author]

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