I just found out that I have MPN. My platelet count is elevated at 1,235. Way too high! I will be having a bone marrow biopsy to identify what I have. Very scared to be completely honest. I have two beautiful little boys. I’m 34 and I hope that this isn’t a death sentence. I want to be around children for a very long time.
What’s the reality in this? Google is scary. I’d rather hear it from people who actually have it or know someone that has it. Thank you!
Hiya and sorry to hear about your diagnosis.
With elevated platelets its likely to be ET. Totally understand your concerns.
Firstly...dont google, or at least not yet, not until you have got your head around it.
Life expectancy for a well controlled MPN is pretty much normal.
Lot of us who have an MPN from a young age ( i was 42 when diagnosed) live good active lives. I dont feel generally that mine is different, in fact i think im fitter than most 49 year olds.
Of course im not saying it will be plain sailing, we can all have our challenges, but by no means is this a death sentence, nor does it mean you need to put your life on hold and hopefully not make massive changes to the way you currently live.
You may of course choose to make lifestyle changes which will help, you may already do it of course, but keeping hydrated, eating healthily, excercise..are all great things for managing your condition.
People on here all have great advice so keep posting with any issues, concerns you have.
all the best.
Paul
Hi Paul,
Thank you so much for your response. I am very grateful to have found this website. It has given me a lot of hope.
My doctor has not given me any advise on the things I need to change since my tests have not been done yet but I have been doing some small changes like improving my diet - significantly reducing sugar intake (ex: sugar with a side of coffee. LOL), chocolates, dessert, sugary drinks, etc. I have a sweet tooth so this is tough but if it will help make me better, I will do it.
Thank you again! I appreciate it a lot!
Good morning Margarita
Be positive and you will be fine
Although discovering the illness is scary I’ve found other than taking meds living a normal life is the norm.
I was diagnosed 9 years ago when I was 39 with platelets at 1800, it took a few years to get me on the correct meds and get my count under control but since then happy days.
I have the odd down day with fatigue from the meds but other than that I do everything I want.
I am very positive that I will lead a long and normal life.
I have found exercise makes you feel better as being fitter can only help your body
I believe that this illness could be a blessing in some way as not many people are looked after for the rest of their life by having a blood test regularly which could help diagnose any other illness early
My haematology team are great and I have all the confidence in them to resolve any issues I have
Be positive and you will be fine
I have two young boys and intend to be around for the gran kids
As I have heard before- if you are going to get cancer it’s a good one to get as it can be controlled
Stay safe and hope this helps
Hi Gunner,
Thank you for your response. I will be going through several tests next week - bone marrow biopsy, ultrasound, skin biopsy. It’s scary but I can’t wait to get them done so I would know what steps I need to do next.
It’s really odd how my body / energy quickly shifted. I worked out regularly in the past, sometimes even twice a day. And now, it’s just been too hard to get up and go. It also doesn’t help that the gyms are not open here in Los Angeles.
Anyway, I want to thank you again for your response as this has given me a lot of hope and optimism.
hello Margaritampn, and welcome to our forum. We all completely understand how you are feeling at the moment, it is very scary when you are first diagnosed and of course you are scared and worried about your life expectancy. In general, patients with ET, without severe clotting or bleeding complications have an excellent chance of living out a near-normal life span if properly monitored and treated as necessary. Many of us with ET have had it for years and still going strong, so try not to worry too much, easy to say I know.
I would advise that you read the information we have on our website mpnvoice.org.uk, this will answer many of your questions, you can also read about all the different treatment options. Before your next appointment with your haematologist start writing down all the things you want to know and take the list of questions with you so that you don't forget to ask something important, the main questions are:
which MPN do you have
what medication will be prescribed
how often will you be seen in clinic
We are all here for you, best wishes, Maz
Hi Margarita, good you found our forum. I have ET JAK 2 positive, I have had it for over six years, and to be truthful I am fitter now than I ever was before my diagnosis, always had something wrong think it had been going on for years, even going back to having my daughter prematurely think it was all starting then my health just deteriorated, she is now 39, now I keep fit, eat well, eat plenty of fruit and veg and live life to the full and drink at least 2 Litres of water a day a must if you go on any on the drug therapies, might just be Aspirin or watch and wait. My Platelets are all in the normal range after a bit of a blip earlier this year, docs think it could of been Covid but I bounced back.
When I was told I had ET I freaked, thought my life was over, but how wrong was I, my Haematologist told me to come on this forum and I have never looked back, so much good advice has been given over the years, and its great to know that you are not alone no matter what type of MPN you have.
I know you are very afraid of your future and having young children, but believe me most people with an MPN go on to live a normal life span, plus you will be kept an eye on which is also a bonus.
So welcome and be reassured that we are all here for one another, we are a very rare bunch of people no matter what time of day it is to share your worries.
Once you know what type of MPN you have, get in touch with Maz and she can arrange a buddy for you to talk to who has the same as you.
Jean
Jean, I went back yo my old post and read this again. Brings me so much joy and hope. I had my BMB 7 days ago and tomorrow, I will be seeing my hematologist to discuss results. Pretty nervous but also very eager to learn the results so we can start treatment, if needed.
Hoping for good news. Thank you again.
Gunner says that if you to have cancer this is the best to have and also regular blood tests monitor your health. I’d like to add that I’ve experienced being referred to a consultant for an ailment ‘just to g by e on safe side’ because of my condition. Good luck
Hi,
Just wanted to say agree with all the other replies and it is a shock when you are diagnosed.
I think that it certainly helps to be positive and I try to keep that attitude. I lead a normal life and am over twice your age, diagnosed 6 years ago.
I also believe that some form of exercise helps. For instance with the last months rain I was very reluctant to take a longish daily walk and that did seem to affect how I felt, mentally I mean. I expect that your life is already pretty hectic at your age and at the moment you will feel naturally very apprehensive about things.
You have found this great helpful site and will hopefully begin to feel that you can carry on as before. Wishing you the very best.
Jenny
Hi I was diagnosed with ET at a similar age to you with platelets around 1500, I’m still alive and kicking at 69 so with the right treatment which you will get you should be ok, I’ve been on Hydroxy for over 20 years now and my platelets vary slightly from 250 to 350 I’m tested every 4 months wait on your BMB and try not to worry too much best wishes
Hello there! I am very happy to learn that you are still alive and living the life! Gives me so much hope! Had my bmb 7 days ago and will be speaking with my hematologist tomorrow about the results! Wish me luck! And thank you for this! Gives me life 
I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. I have lead a rich good life and continue to do so. Mot of this time, I managed just fine with nothing but a low-dose aspirin. There have been some challenges along the way, particularly in the last couple of years, but they have been manageable. You should look forward to raising your two children and see your grandchildren someday.
As others already said, most people with ET can expect to live a normal to near-normal lifespan. I would not recommend Googling yourself into a frenzy. Stick with a few reliable sources like the Voices of MPN, MPN Research Foundation and MPN Advocacy and Education International sites. You will have plenty of time to learn what you need to learn once you know exactly what that is.
At this point one of the best things you can do is to find a MPN Specialist near you. Most hematologists have little experience with MPNs and do not have the KSAs to provide optimal treatment. Here is a list mpnforum.com/list-hem./ .
Do please stay in touch and let us know how things go.
Hi Hunter! Thank you for your message. I has my Bmb 7 days ago, dermatologist (for eczema) 4 days ago and ultrasound 3 days ago. Tomorrow, I will be seeing my hematologist to discuss results. Scared but also just eager to learn about results so we can start treatment, if needed.
Wish me luck! Happy to learn that you are living an almost normal life. That is what I aspire for. I will keep you posted!
Lots of luck wished! 🍀🍀 Do please let us know what you find out.
Hi everyone,mine is 1,697 and down into 1,120.i was diagnose since 2011 and taking Hydroxy for 9 years but it makes my finger tips pin & needles my shoulder totally pain. and last month i was on peginterferon but not good to me.I was vomitted of yellowgreen color and the taste so really sour.
Just keep on praying.
Anybody here taking Roxolitinib?
I was just started this month.
Hoping & Praying the Lord will keep us safe.
I was diagnosed with ET over 20 years ago. My counts have been stable with me taking Hydrea 500 mg every other day plus low dose aspirin. Hopefully you will enjoy a long and lovely life with your family♥️
42 years old and recently diagnosed
life expectancy for under 60’s
MPN-U or MPN Unclassifiable
I am 22 years old male and I have polycythemia 
