I had my 8 weeks check up at the oncology unit at hospital yesterday ,,my results were excellent my blood tests surprised the specialist doctor ..I have had my blood problem diagnosed 6 years ago .The magic trial was suggested to me as I became unstable and needed venesection every 4 weeks ,.i volunteered to take ruxulitnib every day ,with clopiterol blood thinning ,. I had surgery for a replacement knee last December .Of course we all worried I might bleed after ,but I didn't . I have had my ups and downs with side effects ,,night sweats and tummy problems ,as each one came I tried to over come it ,by changing my diet intake .i drink filtered water and juice .i live on a vegetarian ,,diet almost now .eat only fresh growing fruit and lots of different veg every day .its got a new tital now !!! The clean diet ,for me it seems sensible .i want to live a long healthy life ,so I walk my dogs and rest when I need to ...I amaze my doctors every visit ,maybe if you read the book I read ..the PH Miracle diet ,,It can help you out there as well as it has me ......love as ever Twinkly ....xx❤️😘❤️
Help yourself .eat to be well ...: I had my... - MPN Voice
Help yourself .eat to be well ...
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Eat yourself well. Hi Twinkly. How wonderful that things are going so well for you. Am interested in the PH Miracle diet book. How do you feel it's helped you. Sounds sensible to me. Where did you find it? Keep staying well and well done you. Mary
The book is really easy to get on line ,it's old now so not expensive .to buy . It helps reading reports of others who needed the inspiration to get started ,. But you need to detox first on just home made soups and water from filtered jug . clear your insides of all that junk you have in the linings ...over the years ,then stop buying packets and tins ,,buy fresh and eat healthy at home ,buy fruit and salad and green veg ...if it grows and you recognise it ,that's fine ....lots of luck ........ Twinkly xx❤️😘😍❤️
Wow so so glad the hear that Twinkly
Your a inspiration to us all , x
I also would love that Book 📖
Xmas gift I think 😜
You keep doing what your doing I’m going to follow you closely xx
Love Pam x
Hi everyone. Don't know if this is any help to you, if you don't mind good quality second hand books, there is a site World of Books where you can obtain Ph diet books around £2.80. Thank you everyone for your posts, I have learnt so much from the information that you share, somehow having an alien in my body is no longer scary. Xx Jan
Always love to read your posts Twinkly and glad you are doing well xxx
Disappointed not to see the usual picture of you and your lovely dogs Twinkly! Glad you are well. Karen xx
Hi Twinkly, so glad to see you are doing so well. A word of caution though. If you are referring to The PH Miracle Diet by Robert Young he is apparently currently in prison in the US on multiple count of fraud. He is understood to have no medical background/ qualifications at all. I know there are other books extolling the virtues of PH with regard to health so maybe you are recommending something else? As you appear to be benefiting maybe you could confirm which book you are recommending?
Best wishes. Jan. xx
Hi Jan, you are correct I think he is in prison for around 3 years.
I think some of these diet/lifestyles suit some people and if they work for you then fine. But just remember the people that write these books and give advice make millions of pounds off us poor souls who will try anything to make ourselves feel better.
I would not profess to tell anyone what they should or should not eat, I think we all need to make up our own minds about what suits us. I'm sure many of us know someone in their 90's. If you ask them what they have eaten for the last 90 years the answer will be everything! Meat, dairy, bread etc.
I eat a healthy well balanced diet which includes meat, chocolate, an occasional glass of wine and I feel great!
Sorry, rant over! Happy weekend everyone.
Judy x
I read lots of books when I was diagnosed 6 years ago .But I took on the whole picture of life changing advice ,,of course I know of the prison sentence of Robert Young ...But I'm not advocating a CURE......I'm only telling you how my own results have improved by eating and drinking healthy growing fruit and veg ...Also of course by following this pattern of. Gentle exercise 20 minutes walking outside every day ..and smaller meals of high energy foods . No tinned food or fizzy drinks ,full of cancer feeding sugar and shelf life chemicals ...this site to me is a life sharing experience forum .we exchange our own ways of coping with an in curable ,debilitating Illness ..I put forward suggestions .....that's my way of trying to help ... Love as ever. twinkly ..❤️😘❤️
Please, Twinkly, what I said was in no way meant to be a criticism of what you said. It was just shared as a word of caution. I too follow a mostly fresh food diet and short walks to improve my health. We all know that at the moment there is no cure for what we have other than maybe a stem cell transplant and as we have noted from the experiences of people on this forum and others that this route is a potential minefield! It makes sense to adopt as healthy a lifestyle as possible while fighting an MPN. I was simply concerned that others were appearing to wish to buy Robert Youngs book and I just wanted to share that he was exposed as a charleton.
You are well known for contributing upbeat posts on here and giving us all encouragement. Please don't feel I was being hostile in any way but as you say, this is a place for sharing. We all love you - and your dogs!! Best wishes, Jan
Hi Twinkly. Glad you're feeling so well. I can hear it in your post!! Just wondering though...are you careful that you're eating enough protein and getting all the other important nutrients? Katie
I feel compelled to add a word or two. For many, many years I was a strict vegetarian until a doctor noticed my fragile nails and asked if I avoided meat products. His advice was to eat fish and chicken at the very least. Now my point is this, I ate well I exercised every day by walking 4 miles before breakfast. I rescued swans as a hobby and was really active and yet I still ended up with PV now MF.
I think it is luck of the draw and my diet now is an all round one including lovely cakes and chocolate when the occasion demands it. (Usually to cheer me up or when I am with friends for coffee. Something a carrot just can't do) Masses of veggies and delicious fruit along with enough meat/fish/chicken to give me the protein we all need. Now I don't know if I am right but so far I am doing OK. So I think it is a question of finding what suits us as individuals. It's good to share ideas and opinions because that is where we get our knowledge from. Maybe MPN voice ought to publish a book with all our personal experiences where food is concerned. Could be interesting reading don't you think?
Happy eating everyone!