UK CLL Forum, UKCLLFORUM

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Topic Made On: Sep 20, 2012 06:01pm
adam1

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Hi everyone, I was diagnosed with CLL last Tuesday and I'm just getting my head around all the information I've been given...I have never heard of CLL before and I'm still bit numb.

I was 52 this month and it all started when I saw an ENT consultant last June about my hearing. He requested a scan, which showed I had enlarged Lymph nodes in my neck. Just to make sure, he then arranged for me to have an ultrasound scan on my neck. They also did a biopsy, which I was surprised at. It wasn't until that point that thought it might be something serious.

I returned to the ENT consultant a week later to get the results and he told me that I had Lymphoma. He referred me to a haematologist who gave me the correct diagnosis of CLL.
The haematologist suggested that I might have had CLL for many years. Other than a slightly enlarged node in my neck I'm pretty fit and active even though I'm overweight and my blood results came back good. I'm now waiting for my bone marrow biopsy and full body CT scan appointments to find out more.

Being given news like this was like taking the floor away. Everything is carrying on as normal but I’m not. I have CLL with me now and my thoughts are racing around.

I would like to thank everyone who has contributed to this forum because they have helped me to come to terms with CLL over the past few days and I’m sure it will continue to support others.

Thank you,
Adam




Replied On: Sep 21, 2012 10:52am
Lesley

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Hi Adam, i like you am 52 now...i have had CLL for 18 years...i was 34 when diagnosed, i know how stressful it can be when you are first told about it...but good luck and i hope you keep fit and well. Lesley



Replied On: Sep 21, 2012 11:47am
adam1

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Many thanks Lesley for your reply. Best wishes to you.

Adam



Replied On: Sep 21, 2012 07:39pm
Venceremos

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Welcome Adam,
I was diagnosed with CLL [Watch and Wait] at exactly the same age as you. My data sheets show that I've had it since 2001. My GP at that time missed it and didn't refer me. My diagnosis happened just ten months after a four month hospitalisation [Pneumonia, Pulmonary Embolism, Surgical Tracheostomy, Werneckes Encephalopathy]. I know how you were feeling immediately after your diagnosis.
Now, nearly three years after my hospitalisation, I'm 30 kilos lighter [113-83] and I'm physically very fit. I personally believe that diet is critical to our present and future good health - I'm vegan and eat no refined carbohydrates.
I strongly recommend that you get yourself a copy of The China Study by Dr Colin Campbell. This book was much needed original thinking for me, that has done my health a power of good.



Replied On: Sep 21, 2012 11:29pm
Baabee

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Hi Adam I still regard myself as new to this CLL.
I was told in August 2010 --But evidently it was evident to my GP
from 2006!
The shock is just as you discribed even at my 72yrs at diagnosis!
Watch and Wait!
the other W is the baddy Worry!
One thing I can reassure you of, coping happens mostly because of this support group --I am eternally gratefully to all on this caring and helpful forum!
http://www.cllsupport.org.uk/ is another link for very good information that someone on here referred us too.
Also
http://updates.clltopics.org/
But take time on this see saw of emotions and don't be afraid to ask, Understanding takes time.
Good luck with your scans etc
Barbara



Replied On: Sep 22, 2012 04:54pm


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Hello Venceremos and Barbara, thank you for sharing your experience and advice. I will certainly look for The China Study book and I have had a quick look at the two web links Barbara included. They will be a great source of information for me.

I'm holding on to some of the information I have found so far. That there have been many new and progressive developments in treatments for CLL over the past decade, which is on going.

Many thanks again

Adam




Replied On: Sep 23, 2012 02:19pm
sassy1261

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Hi Adam, just to wish you good luck, I had it from my late 50s, though only diagnosed in early 60s. It has affected my hearing as well and I have had some bad infections. Just recovering from a complete hysterectomy after it was found I had endometrial cancer, but I don't think it is linked. I'm coming up 67 now and still going strong, although I do get tired sometimes. Hope your deletion is one of the good ones like me and you sail on regardless!



Replied On: Sep 23, 2012 05:21pm
pendle witch

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Hi Vencermos and Adam

I was diagnosed in 2010, aged 51 and like you felt floored. Other things in life you can get around and see a future afterwards, but initially I couldn't see any hope. that changed when I read The China Study and 2 years on, like Venceremos, it has been life changing. My health has improved hugely and ironically people are always telling me how well I look! I am well. My white blood cell count initially went up a little, then stayed steady at around 15 and last time me GP checked it (when I was naughty and treated myself to an oyster and got food poisoning), it had come down to 12, despite being very ill. I go back again in October to see the specialist. So pleased you are feeling well Venceremos. How are the blood readings doing?

Pendle Witch



Replied On: Sep 26, 2012 02:15am


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Hi Pendle Witch,
Great to see you up on here and that you're doing fine.
As it was you that recommended The China Study in the first place, I'll happily reciprocate by recommending something that's a beautiful, life affirming spectacle for you. There's a new documentary showing in independent cinemas called: Samsara. I don't know if it's showing up your way [I saw it London] but it will be out on DVD within 3 months.
Some of my blood counts: my WBC, has improved from 16.00-13.71; my Lymphocyte count has improved from 10.61-6.5; my HB count has improved from 13.6-14.5; my Platelet count has worsened a bit but not alarmingly so. Maybe like yourself, I'm almost embarrassed to publish such relatively good figures - considering how some members of this forum are in a much more serious situation than we are. I like to think (rightly or wrongly) that I'm on to something ground-breaking diet wise - even found a 'cure'. Even though my Haematologist clearly told me "monitoring only" I left the hospital looking at everything: like it was for the last time (seems ridiculous now). Maybe it was because my cancer diagnosis was just 10 months after my 4 month hospitalisation, but I felt like Mother Nature had given me a proper smack in the chops. It took me a year to realise, that maybe CLL won't kill me, though it may have been a contributory factor with regard to my 2009 hospitalisation.
The China Study, has more lessons to teach us than just diet - important as diet is. It'a taught me that we must all muster as much original thought as we can with regard to how we deal with our disease. There was an excellent video on this site on July 1st [Understanding Your CLL] which includes what the chemical make-up of chemotherapy, is actually derived from.
Stay well, you seem like you love your grub, be a good girl and stay off the oysters.



Replied On: Sep 26, 2012 10:43am
pendle witch

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That's wonderful news on your readings.

Thanks for the information about the documentary. I'm intrigued and will definitely put it on my Christmas list, as it should be out around then. There is an independent cinema in Manchester, so meanwhile I'll look out for it there.

Stay well and I will definitely stay away from oysters!

Pendle Witch



Replied On: Sep 26, 2012 12:35pm
Zeno

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As a counter argument, but not in the sense to belittle those who try the China Study for their own personal improvements, I do worry that the China Study has too many counter suggestions that lean towards the chances of a real benefits of controlling/benefitting our disease. The China Study is based on a land where quality green products are freely available. However, the statistics show big variations from region to region as far as cases of cancer are concerned.

As I have said in previous mails, I was diagnosed with CLL in May 2001. Since then I have been on a number of treatments, oral and intravenous. The most recent finishing last week was CHOP-R, 8 sessions. Last year, BNR, 6 treatments. and early last year ESHAP-R.

I do not eat meat, not since my wife decided to stop meat consumption 28 years ago. I eat fish and cheese but mostly vegetarian type diets. I drink wine. have access to dieticians in the hospitals that I work in and pretty much the same information comes up, keep cholesterol low, avoid high fat foods and up fruit and vegetable intake along with pulses to keep an even balance. Keep alcohol intake low!!

I guess in my case this has worked thus far although recent remissions have been getting shorter. Antioxidants are crucial and can be obtained from fruit as well as green tea which I like but not to measurable amounts. The greatest strength that a cancer sufferer can have, especially those with leukaemia, is self belief and dogged determination to be the victor and not the victim. Therefore I think it is essential to do what ever is best with their own self belief. Which is why I have concerns with the China Study and the implications contained in Campbell's book and possibly misconceived solutions.


My thoughts come from the following articles:

http://rawfoodsos.com/2010/07/07/the-china-study-fact-or-fallac/

http://www.cholesterol-and-health.com/China-Study.html

http://www.sciencebasedmedicine.org/index.php/385/

http://drlwilson.com/Articles/CHINA%20STUDY%20BOOK%20REVIEW.htm

http://www.fourhourworkweek.com/blog/wp-content/uploads/2011/01/Spotting-Bad-Science-103-The-China-Study.pdf

I appreciate that many readers may resent my pointing these issues out. However, I have yet to find cast iron empirical scientific evidence that a vegan diet is more healthy when there is clearly a big reduction with the intake of essential minerals and vitamins.

As a matter of interest, I have included one further article regarding the massive reduction of heart disease in Finland in between the 70-80's. The point of the article is a government driven programme that was adopted by the Finnish population:
http://www.pritikin.com/your-health/health-benefits/reverse-heart-disease/252-heart-disease-deaths-plunge-75.html

It is a great pity that, which ever party is in power, a programme is not put forward independent of the food giants to try and educate eating habits in this country and the adverse effect of health.




Replied On: Sep 27, 2012 10:41am
Nick

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Hi Adam and all.


Interesting post Zeno. Thanks it is good to see some balance in the discussion. If you follow the writings of many of our expert CLL writers past and present they have expressed themselves very clearly, It is a balanced diet that is important. Professor Hamblin addressed this on several occasions in his blog Mutations of Mortality. Just use the search box.

this may be helpful:

Eating well with CLL

By Yvonne M Jeanes BSc RD PhD
Senior Lecturer in Clinical Nutrition.

http://www.cllsupport.org.uk/eatingwell.htm


Zeno the Pritiken article about Finland you provided really caught my eye. I wish I had met a Dr Puska earlier in life for I was probably an example of their; ” lean and rugged from jobs like farming and logging, they liked butter, whole milk, cheese, salt, sausage, and cigarettes” my Surname and family origins put me back to their land. At 6 foot six and an active builder I thought I was in my prime and proud of my physic and fitness..I hope you don’t mind me sharing this.

At 47 a stroke and diagnosis of this disease put paid to that, however after a while I was able to rebalance and accept a “new me”, I even made a few concessions to diet, What I thought were just CLL symptoms increased and my ALC counts slowly climbed into the high twenties over two years.

THEN WHAM, WHAM Again. Heart attacks!!.Thankfully I didn’t believe my GP when he tried to prescribe anti epileptics for pain relief and symptoms of what he called neuralgia I took myself to my local hospital and they had me prepped for an intervention and blued and twoed to the closest surgical facility, where a team had been called in on a Saturday to fix me. A tiny little stent to clear the blocked heart artery and I was ready for perhaps the greatest implant of all. A lifestyle change.

I had always blamed the CLL for many of my recent difficulties and when I research things it does seem highly likely that it was a factor. However I can't follow a belief that the disease can be controlled by diet and supplementation with expensive delicacies. Even though there is some evidence from incomplete overseas trials that suggest this may be possible in very early or indolent CLL. But I do believe we can help ourselves be able to live with it.

It was now time to address how can I stay alive long enough to better live with it? So, no fags, an NHS cardio rehab course advising on diet change and implementing a new exercise regime. This involves a balanced diet similar to what Zeno recommends and is aimed at heart health, but it seems little different at all from the majority of diets recommended for healthy living and optimum immunity by the health service. I would always talk to a nutritionalist or dietitian if you were considering an extreme diet to ensure that it is balanced. As I am not vegetarian I removed all red meat and saturated fats and increased my cold water oily fish,now use little dairy and concentrate on oils rich in omega 3 and 9 for cooking and spreads, i make sure I eat at least my five a day of fresh veg and plenty of pulses and whole grain. I no longer drink other than a few glasses of red every now and then. As I am on prophylaxis to prevent future CVD events, My GP monitors my blood serum contents to help me.

Straight after the artery was cleared and I began to mend my lymphocyte count in my PB began to alter and over four months it receded to normal, not even the CLL starting count, at one point you wouldn’t even have considered lymphocytosis my counts were that normal. This was observed over six blood tests and the ALC count receded from 26 to below 5. Six months down the line and my counts are still in the normal range and I have lost two and a half stone, I don’t miss the fags, never reach for a drink and experience far less physical discomfort from arthritis and CLL. Now here are the greatest questions for me.

Did clearing the blockage allow CLL cells to settle back into the tissues now that the CVD inflamitory situation had been removed and a feedback loop broken that was driving my disease?

Has my diet actually influenced the change in my PB lymphocyte count?

Is the disease up to something else as my platelets have been steadily falling over the same period? The consultant sure is searching for the missing CLL, I have consultations every two months now as he checks my nodes thoroughly. For as he suggests the cells don’t die they must have gone somewhere.

Whatever is happening I know my feeling of wellness is so much better and I am physically so much better in myself, a Welsh hill walk twice a week is my new exercise regime now that gardening is over and Arthur prevents gym work. So What ever is going on , I am enjoying having normal looking bloods and feel better prepared to deal with what the disease throws at me!! But as Zeno suggests belief is important. Can’t tell you why but can tell you I believe, it does make a difference to me. I wish I had understood the importance of a balanced diet earlier in life and not allowed diagnosis of CLL to have encouraged a more sedentary lifestyle.

So true Zeno;

“It is a great pity that, which ever party is in power, a programme is not put forward independent of the food giants to try and educate eating habits in this country and the adverse effect of health.”

Nick



Replied On: Sep 27, 2012 01:00pm
Nick

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Hi adam

You mention you have been given some information about CLL, I hope this doesn’t add too much to the amount you have but these are perhaps the easiest to follow and most current from recommended UK sources. It is early days you will get much support here.



This is one of the very best introductory articles written for us UK patients and is in a language and format that is patient friendly. A very good place to start your learning about CLL. Written for the Lymphoma Association and published on 03.02.2012

https://www.lymphomas.org.uk/sites/default/files/pdfs/Chronic%20lymphocytic%20leukaemia%20(CLL).pdf

“This article is aiming to answer the main questions that people with newly diagnosed CLL
might ask:

● What is CLL and what causes it?
● What are the symptoms?
● How is CLL diagnosed and what do the ‘stages’ mean?
● How might CLL affect me?
● What are the treatment options – when to start, what to have, when to stop?
● What happens after treatment?”


Leukaemia and lymphoma Research, Chronic Lymphocytic Leukaemia booklet:

http://leukaemialymphomaresearch.org.uk/sites/default/files/cll_oct_2011_0.pdf

Leukaemia and Lymphoma Research, “watch and wait” booklet can be accessed here.

http://leukaemialymphomaresearch.org.uk/sites/default/files/watch_and_wait_dec_2011.pdf


The CLL Support Association is a UK national charity run by CLL patients, providing support and education either by the website or through local meetings: http://www.cllsupport.org.uk


Macmillan provide a very extensive website providing information and support on all life aspects when living with a cancer and have a CLL section here:
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Leukaemiachroniclymphocytic/CLL.aspx



Replied On: Sep 28, 2012 03:18am
Venceremos

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The food industry is now more dangerous than the tobacco industry: fact.
The food industry (particularly in america) funds a high proportion of 'research' into health/nutrition. This same food industry, has waged a systematic propaganda campaign against The China Study and Dr Colin Campbell (he rightly threatens their profits).
Shortly after I was diagnosed with CLL, I received an information pack from Macmillan, which contained a section on diet [I was then vegetarian]. I was understandably furious with this 'dietary advice'. It contained so much processed food, that it crossed my mind that Macmillan had been knobbled by the food industry (whether that's actually true or not).
As someone who has considerable experience of hospitals, I consider the advice of hospital nutritionists, to be frequently box-ticked tosh.
I don't know where Zeno gets his, "there is clearly a big reduction with the essential intake of minerals and vitamins" from [vegan diet]. I'm eating more minerals and vitamins than ever [I'm vegan]. I move so well these days, that I swear that if my bones were twenty years younger, I'd be a professional sportsman.
In my opinion our increasingly corporatised society - including the areas of health and nutrition - can make even the intelligent members of this forum - which in my experience of this forum is all of us - remarkably resistant to original thinking.



Replied On: Sep 29, 2012 09:31am
Zeno

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Venceremos

Actually we are not a million miles away with our thoughts. The point of posting the experiment in Finland demonstrates that a government can and did draw up a programme against the will of the food manufacturers and managed to reduce what was then the highest heart failure rate to the lowest internationally.

I was at pains to point out that my thoughts were not to belittle those that wish to take on board the China Study. However, I am sure that you will agree with me that Campbell does not, in reality, pose a threat to the food industry, they are too big and powerful as you say. Where the threat should come from is elected administrations in power and provide a programme of promoting good health with changing diets amongst it's citizens. Finland case in point. Campbell proposes some interesting arguments. I am sure you may accept that statistics can often be counter argued or flawed. Hence putting forward articles that need to be read to make balanced choice and decision which, from memory, were not written by the food industry. We all must do what we believe is right for ourselves, being the victor not the victim.

In terms of nutrition, and according to the quite senior dieticians that I work with, vegan diets offer a reduced intake of nutritional requirements and the volume of foods such as pulses, tofu, soya etc needs to be increased to be of good value thus adding increased starches etc. (My wife had a vegan diet for getting on to twenty years but now eats fish) The main thing is that it works for you and that is good. I get some of my proteins from indulging in small amounts of eggs and cheese but principally from fish. Being a game fisherman with annual trips to Norway and Scotland, I guess that I would choose fish for my protein intakes!

Incidentally, and you will have read my history and chemotherapy intake, 16 session in 22 months ending two weeks ago, I still cycle up to twenty miles a day. Oh, and I was an athlete in my younger days and the local cross country champion for my county at the time. That is a different story.

Best wishes with your progress Venceremos.

Zeno



Replied On: Sep 30, 2012 01:25pm
Domineys

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Adam

I’m sorry to hear about your diagnosis and can understand the shock and worry you must be experiencing. I endorse what everybody says about the China Study but would like to make some further suggestions based on my own positive experience.

First of all, it’s important to try to control the worry you naturally feel (easier said than done, I know). I understand that stress causes inflammation in the body, not good for cancer. For me, taking some active steps however small, such as making a list of things to do was helpful, and you’ve already joined the Forum.

Suggestions:

Dr David Servan-Schreiber’s book Anticancer: a New Way of Life, 2nd edition (2011). Chapters 9 and 10 focus on the mind and ‘defusing fear’. Look inside this book on Amazon. You can read pages 1-21, which give a good introduction to the author and the book. You can only read half-way down on p. 21 which, unfortunately, leaves you ending on not such a good note. The end of the page (and chapter) reads ‘All by itself, my mind had found the path to some relief…that night I went to sleep, and the next day I was able to go to work and take the necessary steps to begin to face the disease, and to face my life.’- it really is a positive book.

Chris Woollams’s, The Rainbow Diet (2008) -I think the title misleading, it’s more about lifestyle; and Conventional Cancer Cures – What’s the Alternative (2005) – which led us to the idea of integrated medicine (see my history below). Chris Woollams has a 1st in biochemistry (Cambridge), but took an entirely different career path. He used his scientific knowledge to research cancer worldwide when his adult daughter was diagnosed with cancer. He founded the charity CancerActive to make research accessible and produces a regular magazine (Icon) with articles about all kinds of cancer research. You can see all the back copies of Icon and buy the books on the website www.canceractive.com.

Professor Robert Thomas, Lifestyle and Cancer: the Facts (2011 edition) Again you can read 23 pages plus contents list etc. on Amazon.

Sang Whang, Reverse Aging (1990), again look inside on Amazon. Because cancer thrives in acidic conditions this might also be of interest. There is lots about acid/alkaline internal balance in the Icon magazine.

My history:

Nov. 2001 – diagnosis of Non Hodgkins Lymphoma (Stage 4); age 59 and on sick leave for “depression due to work-related stress”. Treatment – chlorambucil taken orally (standard at that time). Made a list of things to do during recovery! Helped me to think positively.

2003 – relapse, chlorambucil repeated, further relapse after 6 months.

2004/5 – RCOP (retuximab + 3 other drugs) intravenously over 6 /7 months.

2004 – notice in parish magazine about talk by Chris Woollams, our introduction to the importance of lifestyle in relation to cancer and the possibility of action in addition to conventional medicine. For both my husband and me, this was empowering and the beginning of seriously taking control.

2005 – discovered an Integrated Medical Clinic (Winchester & London) run by a medically qualified doctor, who had spent a number of years in the Far East. Went for an assessment and have had appointments 3-monthly since; my haematology consultant is fully aware and has no objections. The integrated practitioner is able to monitor the health of my major organs and blood (using specialised equipment not generally used by NHS) and prescribes targeted plant-based support for them,for my immune system and to aid recovery after conventionaltreatment. This is rather expensive for us now we are both retired but we have chosen to sacrifice many other things. This may not be an option for everybody, but much can still be done through diet and lifestyle. We read The China Study as soon as it was published.

2009 – suffered a TIA (minor stroke), fully recovered. Started reading about combating heart disease and tweaked our diet.

mid-2010 – NHL relapse. Treated with fludarabin and cyclocosphamide. Unsuccessful. Deletion found which precluded use of certain drugs eg. Bendamustine, and diagnosis changed to CLL. Hospitalisation with infection.

2011 – 2 further hospitalisations with infections. When recovered treated with Campath, the only option available because of deletion. Warned that not everybody could tolerate this. Had full treatment with only side effects (quickly treated) in first week. Good results. Expected remission 1-2 years. Repeat of Capath possible only one more time, with anticipated shorter remission. Referred for stem cell transplant consideration. Age against me (then 69) because of much increased risk, not least of not surviving the gruelling procedure. One potential donor found, but not a perfect match. Consultant prepared to go ahead, but after long thought I declined. My husband and I both felt it to be the right decision,

2012 – Now 70 and one year after finishing campath treatment,I am in better health than I’ve been for some years. I can’t prove it, and of course we all react differently, but I am convinced that this integrated and lifestyle approach has contributed significantly to my tolerating my conventional treatment well and to my current well-being. I am active, take modest exercise and have a good quality of life with a number of projects on the go. Because I have felt in control, I have been able to accept CLL as part of my life. It is no longer uppermost in my mind and my main concern is to take things as they come and to get the most out of life.

Adam, remember, you can’t do everything at once but just take one step at a time. Also make the most of small pleasures and look for the positives in every day.

Good Luck!

Ann



Replied On: Sep 30, 2012 11:55pm


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Zeno,
Appreciate your points.
If you look at the big picture: veganism is definitely a threat to the food industry. In all the right ways, The China Study is definitely a politically loaded book; it advocates a way of eating based on research that is not influenced by a food industry, that is quite frankly (in more ways than one) poisoning us. If you know of a food that is more nutritious than organic, milled flaxseeds, I'd like to know [I have a tablespoon on my porridge everyday].
I'm fortunate enough to be Watch and Wait. Because I've got four of my five key blood counts going in the right direction, I'm letting my diet take the credit (why not?).
I believe that in 10/20 years, there will be methods of treatment; ways of eating, that will make today's norms seem ridiculous.
I'm not a doctor/nutritionist, but I'm well enough versed in the ways of the world, to suggest to you that many professionals (including nutritionists and those in the medical profession) are just too conservative in their outlook, to see the woods from the trees (in america they're just bought).
I'm glad the government of Finland is seemingly independent of the food industry - because ours is definitely not.



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