9 months on ruxolitinib ,on the Majic trial ,I'm... - MPN Voice

MPN Voice

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9 months on ruxolitinib ,on the Majic trial ,I'm feeling so much better ,my hospital visit today confirmed ,my blood results are excellent ,


I decided to change my life by eating really healthily .2 years ago.I'm convinced now by working hand in hand with my hospital team .Iv turned my life around for the better,

I gave up eating processed ,tinned ,and packet food. Cheese and creamy dairy clogs up the system ,drinking healthily the energy levels are better .So why don't you try it?

You really have got nothing to lose ,and I promise so much to gain.even the aches and pains are so much relieved , keep twinkling .xxxx

7 Replies

Ay up Twinkly Im pleased you're doin well and it's good to read your truly positive posts which certainly inspire me for sure. . . However call me an old cynic 'YOU OLD CYNIC YOU'. . . but although Im not dissing your lifestyle results - and you make good sense, how do you know it works for sure if you haven't tried a healthly balanced diet incl dairy. red meat , alchfrol, etc whilst on the Rux - I agree that types of processed meals / foods don't help one's lifestyle whether you're on any treatment or not and personally Id rather starve to death than eat some of the meals some of my mates tuck into' kebabs, takeaways etc. . Anyway having said what I said in my opener Im sounding negative and I don't mean to, it's just I would really struggle to give up my monthly truckle of Lancashire Crumbly. the juicy medium rump, ze wine etc . . Always a pleasure to respond to you ma cherie xx

Morning J.R.Nice to hear from you ,listen ,,I'm no saint ,you don't get to my age without tasting the sweeter fruits of life . If you do and you haven't Well then you haven't lived

I travelled all over the planet when I was younger ,tasting all that life has to offer .especially in Russia ,vodka flows like water, but when your body says enough ,,,,you better listen ,,time to heal yourself.pills and potions are part of that healing ,but a spring clean is the best remedy I'm convinced ,what's to lose ,try it for a week or two ,,who knows you could some to notice the improvement ,become that JEDI WARRIOR ...xxx

A wise head on mature shoulders say I. . You're right it cuts both ways - you can't really knock it if you aint tried it. . I reckon I would benefit from a detox, , Take care x

Wonderful discussion, you two! I am so pleased for you, Twinkly, that you are feeling so much better. I eat very little processed food but have not cut out the dairy. I eat yoghurt and cheese but am a black coffee person - only one cup of that per day too as I prefer fruit infusions and hate tea. I drink water mostly and very rarely drink alcohol. My blood results have improved greatly on Rux but as I've mentioned before the symptoms (itching, sweating and fatigue) have started to come back. I have increased the dose as of last week so hoping I can get more symptom relief without tanking the blood results. What dose of Rux are you on? I'm sure JR is listening to all this with great interest but as I have actually had a doctor tell me to go and make the most of the time I have left I am loathe to start giving up the little pleasures in life! My fav truckle is Snowdonia Green Thunder! Difficult to track down in Scotland so I can't OD on that either!! keep well, my friends.

Twinkly in reply to beetle

Hi beetle. Iv been lucky as I haven't had the itching but I reckon anti histamine would help ....I take 2 ruxolitinib in the morning then blood thinning and a pantoprazle , for my hiatus hernia ,then tea time I take 3 ruxolitinib , sometimes I take a vitamin C high strength ,to boost my immune system ..if I get tired I take acacia honey ,it's nice in juice or lemon and hot water,it gives me energy when I flag in the afternoons.the good thingis I haven't had a cold for over a year ,.xx


Hey Twinkly and mad Jedi!

So lovely to meet you last weekend Twinkly - this lady is indeed twinkly by the way and absolutely lovely.

I endorse everything said about diet and lifestyle.

I haven't given up meat or fish, but I do make sure that everything I eat is organic ( I know, expensive and not easy to find) but would you put crappy petrol in your car?

No. I no longer eat anything processed, tinned, manufactured either and seldom suffer from fatigue ( fingers crossed). Plenty of walking, plenty of water. Time to look after yourselves.


Ps I'm not a saint either but no alcohol, no dairy produce, no caffeine ( or decaff which is just as bad if not worse)

Try it for at least 6 weeks.

If nothing else you'll lose a pound or two.....

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