New to MPN

[Alicejj]

I am a 17 year old girl and have recently been diagnosed with MPN ET. It was abit of a shock to me at first but now I am just trying to stay positive. My parents gave me this link to read through any of these comments if I wanted to know more about the condition. I was just wondering did anyone make any changes to their diet?

[Sanga]

Hi

I’m sorry you have been diagnosed so young.

I completely changed my diet to an anti inflammatory one that many people who have cancer eat. I don’t have any meat and especially red meat. I have lots of grains and pulses and fish. I drink lots of water and exercise.

Sanga

[Alicejj in reply to Sanga]

Thankyou for that!

Did you find that the condition changed the way you lived your daily life?

Alice

[Sanga in reply to Alicejj]

It did initially as I had to think and understand about what I could and couldn’t do. Risks etc.

However once I understood it I have found it has only improved it. I live normally so long as I take care and make sure I eat well and exercise and drink water.

[Applesnpears]

Hi, have you found your way to the MPN website yet?

mpnvoice.org.uk/

Lots of information and advice.

Lots of support here on the Forum when you need it.

[souplover]

I'm also sorry to hear of someone so young with any illness! But I'm understanding that as long as you are monitored and treated, you can live pretty well with ET.

My understanding is that in general MPNs are not caused by lifestyle factors, but certainly living a healthy lifestyle, in terms of sleep, diet, and exercise, will help you.

My hematologist tested me for a number of inflammatory conditions and found that I'm gluten sensitive, so I try to avoid gluten. That's the only real difference in my diet. But I've always eaten very healthy.

I'm betting that you will become much more health conscious than your friends. And as a result, you will live a long and healthy life, but might need to be realistic about some fatigue and other issues.

[grgracey in reply to souplover]

Yes so true I eat healthily but I have this cancer. Maybe its not the diet its our genes that has defects or our system. Sorry at age 17 so young me I was 32 years old then when I have this cancer. Too bad I didn't enjoy life much because of the symptoms. But be strong you are still very young person. You can make it.

[christiev]

Hello Alice. My son was diagnosed with MF CALR1+ at aged 19. He’s 23 now and remains very well and takes no medication. I was very determined that he should alter his diet (which was pretty good in any case) and do everything he could to ensure good general health. But he was less interested and has carried on life as a uni student in pretty much the same way as any other student, although perhaps with more broccoli and water!! He’s decided that he has very reasonable general health, does lots of exercise, eats well on the whole ( loves his veg and adores olive oil) and didn’t want a constant reminder that he’s got an illness. He, and the rest of us, are confident that the future is very positive for people with MPNs.

So of course look after yourself, but don’t obsess ( these diagnoses can play with your mind!), stay happy and relaxed - you’ve got every chance of great and long life.

[Lena70 in reply to christiev]

This comment made my day. Hooray for broccoli and water and enjoying life!

[neela2020]

Your words are so full of positivity. May your son be blessed with happiness and energy .

[Hmmm79]

Hi Alice, that's such a shame and I hope you're ok; it shouldn't make any difference to your lifestyle. I was diagnosed at 28 and it didn't stop me doing everything my friends did. I didn't change my diet either, although of course it would be of benefit to eat as healthily as possible x

[tracey13]

My husband has post PV MF he's calorie counting keeping his sugars low his mood is much better and his blood results are better so a healthy diet is good all round.

He has had his mpn for 7 years now still works full time and lives a normal life .

Tracey

[Aime]

Welcome to this forum. You will get loads of support and make lots of new friends. Eat healthy (with treats of course), keep hydrated and rest if you’re tired. Visit the website as suggested above. The more knowledge you have, the more you will feel in control. Most of all, keep in touch and share any concerns and questions you have. This forum and website is monitored by Maz and her team so information is trustworthy.

Maz and her team organise information days up and down the UK so if you can attend one, it is so worthwhile. Maz can also fix you up with a personal buddy who you can contact if you need to. Details are on the website.

Kindest regards Aime x😻😻

[Ebot]

Hello Alice.

Welcome to our exclusive group!

You should definitely check out the MPN Voice website which has loads of useful, sensible - and most importantly - up to date information.

(In case you don’t know, MPN Voice is the patient charity set up by the MPN team at Guy’s Hospital in London - they are global experts in this disease. MPN Voice moderates this Forum.)

The main thing I want to say is, that one of MPN Voice’s next big projects is creating resources aimed specifically at younger patients. So watch this space! I’m also sure that if you get in touch with Maz (the moderator of this Forum and a lynchpin at MPN Voice) she will be able to put you in touch with other younger people with MPNs. My guess is, it would be enormously helpful to chat to others in a similar situation to yourself and at a similar life stage.

With regards to staying healthy the usual advice applies. Drink lots of water every day. 2 to 3 litres. Staying hydrated is key. Eat a balanced, healthy diet - more fresh veg and fruit, less carbs, cut out the junk food etc etc. Boring but true! And exercise. And then get on with your life! I’m also guessing that you’ve got lots of exciting - and challenging (!) - stuff on your plate right now. And your whole brilliant life ahead! So grab it with both hands!

Wishing you well.

[Mazcd Partner MPNVoice]

Hello Alice, welcome to our forum, I hope that it helps you. As suggested, have a read of the information on our website mpnvoice.org.uk. If you would like to have a buddy for one-to-one support you can email me at [e-mail] a buddy is someone who can offer support and advice to you from the perspective of someone who understands what it is like to live with ET, and we do have buddies who, like you, were diagnosed when they were very young. Best wishes, Maz

[Jlah]

Hi Alice. You sound like you have a good perspective already. I don’t follow an anti-inflammatory diet as I lack the discipline! but have tried to be more sensible. I don’t eat fast food, drink 2 litres of water a day (hot drinks on top) and try to eat more fish and veg. I’m not sure how your diagnosis came about but many people have ET and live long and healthy lives. My Nan had it and lived to the grand age of 97. My mum had it and is 75 and has far more energy than me. Best wishes and enjoy life. Jacquie x

[Aneliv9 in reply to Jlah]

For how many years your mam and grandma had ET?

[Wyebird]

Oh bless you. To be so young to have an MPn . We all respond differently . As for me no. I’ve tried various supplements but apart from eating healthily which is extremely important no. I do think my magnesium supplements have been useful my recent blood test showed I have a decent level which I feel wouldn’t be the case without them. Exercise is extremely important. So tell your parents you can’t do household chores you are exercising instead lol.

Are you in the Uk?

[Raphael_UK]

Sorry to have to welcome you to our “club” my advice is to eat healthy, if you stay healthy keep fit, this illness doesn’t not have to impact in your normal life.

[azaelea]

Sorry to hear you've been diagnosed with ET at such an early age but as you will see from this forum, you will carry on living a normal life just following the guidelines outlined above. Welcome to our lovely helpful group and keep in touch. Fran xx

[hunter5582]

Welcome to the club, though I doubt you really wanted to join this one. You are doubtless one of the youngest members to our group. I hope you do find a strong support group both here and outside this forum. I worked for 31 years with adolescents facing a variety of very serious life challenges. Those who face their difficulties directly, but do not lose sight of all the other more positive aspects of life are the ones who succeed best. The same is true for all of us regardless of age.

I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. Still alive and kicking!. Despite some challenges as I have aged, I have had a rich life with relatively few problems managing the MPN.

There is a lot to take in and learn about having ET. The good news is that progress is being made on treatment. I expect you will have the chance to see tremendous improvements in the treatment options, perhaps even a cure in your lifetime.

Please do stay in touch in this forum. We are stronger together.

[Anag]

Hi Alice!

Welcome to our group!

Yes! An antiinflammatory diet is sooo important. Getting rid of all chemicals and preservatives also. Real sneaks are body creams, shampoos, body Cremes, perfume, detergents, soaps. Also heavy metals, metal tooth fillings, cheap oils like sunflower seed, canola, rape seed, and GMO soy, cow milk, pork, deep fried foods, anything that comes packaged in plastic. The list is huge because our world is toxic. If you try to change too much, you’ll go nuts, so step at a time. It took me 2 years. I’m so much healthier, got rid of intolerances, allergies and some other anti immune ailments through these changes as did my 16 yr old daughter and husband.

ET is definitely not the end of the world and I now live really attached to the world and happier than before. I’m so much more aware of what is really important in life and that’s the people in my life and living every day fully and consciously. 😁

Let us know how you’re coming along and write any time you need info or just someone to hear you out.

You’ve found yourself a large and loving family to add to yours! Anag

[Threelions]

Not much more I can add as so much brilliant stuff already been said.

Welcome to the group though👍

[Alicejj]

Thankyou to all of you who replied, I appreciate it a lot! It has really helped me understand more about the condition and what I can do to help myself

[Nmom]

My son was just diagnosed in November 2019. He is 17. I have had a harder time with the diagnosis than he has. He will go to college in September. He only takes a daily aspirin. He picked out a medical bracelet to wear in case he is ever in a situation where he can’t tell someone he is ‘special’. I’m trying to get him to eat better, but it’s a slow battle. He gets tired and has learned that an occasion nap can be really good. They told him not to SCUBA dive and that was a huge disappointment, but other than that...he’s been okay. We are in Seattle WA.

[Misty-3]

Hi Alicejj

My friend was diagnosed with PV when he was 18 years old. He is now 32 years old full of energy and happiness and working full time. He doesn’t follow any strict diet but eat just regularly. He has venesection monthly but it doesn’t bother him any bit. No meds for him. And I didn’t even recognise that he also has MPN until I started talking about my MPNU.

I’m a lot older than him or you. Am taking aspirin for now and I try my best to eat healthy and try not worry or get stressed. I tried strict diet but felt miserable. Just like what most said it’s different for each one. But reasonable diet and keeping a positive state of mind helps a lot. And a lot of prayers too (works for me and my friend!). Keep happy!