Just been diagnosed : Hi everyone! Just... - MPN Voice

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Just been diagnosed

Deefen
Deefen

Hi everyone!

Just introducing myself. I’ve just been diagnosed with ET - high platelets turned up randomly in a yearly blood test. I’ve now tested positive for the JAK2 mutation. My GP had never had a patient with this disorder before - when she said to take aspirin she was a bit embarrassed when I said that I’d already put myself on low-dose aspirin a month ago due to my own research into the disorder.

I have no symptoms whatsoever. Im 62 and I’m very fit - work out every weekday and it’s worrying to see some of you say this leads to fatigue? I also follow a strictly ketogenic diet.

Just saw a haematologist today for the first time and he thinks that low dose aspirin will be all I’ll need for many years.

I fly to Europe next week so he’s also suggested I use compression stockings to ward off blood clots and to ensure I drink plenty of water and get up and move a lot - two looong flights - 13hrs & 8hrs!

Any advice or extra info would be very welcome - this whole thing has been a bit of a shock to me - I’m someone who’s always gone out of their way to stay healthy and fit and I’ve never taken any form of medication.

30 Replies
oldestnewest

Hello and Welcome!

Sorry to hear you’ve joined the ET club but being healthy and fit doesn’t have to change after diagnosis! Your platelets could have been high for the past year and if it didn’t effect you then, you don’t have to let it change your lifestyle now 😊

Not everyone suffers from fatigue, some people never have any symptoms. Especially if you are already living a healthy lifestyle.

How high are your platelets sitting? That’s good to hear that your hematologist is happy with you just being on aspirin!

I travelled long haul recently with very high platelets (I think they were around 1000 at the time) I wore the compression socks, stayed super hydrated before, during and after the flights. Move around as much as possible on the plane no matter how silly you may think it looks haha. My haem did also perscribe a blood thinning tablet but he said that was just extra precaution.

Enjoy your trip!!

Deefen
Deefen
in reply to CommonDaisy

Thank you so much for your very positive reply. My numbers are sitting around 700 at present.

Hi Deefen and welcome to the forum.

I have ET too and am aged 63; I am very healthy apart from this diagnosis. Even though you’re fit and healthy, it may come as a shock that you will be categorised as ‘high risk’ on two counts, aged over 60 and being Jak2+. Did your haematologist discuss any cytoreductive therapy?

When I was diagnosed my platelets were only 500, I thought I’d ‘get away’ with aspirin only, as I was healthy. The haematologist explained that I was ‘high risk’ because of age (60), and I needed to commence with cytoreductive therapy to prevent stroke etc. I am on low dose hydrea and I have no side effects, my platelets sit in the 300s.

Treatment is an individual choice, and there are some people who refrain. I think as long as you have ALL of the relevant up to date information from the MPN experts then you can make an informed choice.

Mary x

Deefen
Deefen
in reply to mhos61

Thanks Mary- good to have all knowledge re this as it’s all new to me, despite researching as much as I can. When I get back from Europe- going to talk to haematologist again and will bring this up.

Dee

Osidge
Osidge
in reply to Deefen

Hi Dee. As MPNs are rare, you might want to seek out an MPN specialist rather than a general haematologist.

Deefen
Deefen
in reply to Osidge

Good advice. Might be hard as only 200 people per year in the whole of Australia are diagnosed with ET though.

It’s a pretty exclusive club we belong to, ha ha. I’m like you and the other folks who’ve posted here - early 60s, active before diagnosis and still am. As Mary points out, as we're over 60 that apparently puts us in a high risk category and that’s why my haemo has me on hydroxy too. I’ve had no negative side effects either (currently taking one 500 pill per day, and hoping that brings platelets below 400). Like you I’d never taken any long term meds before and it’s still hard to get my head around the fact that I’m doing it now, but it’s been fine and should you have to take it at some point I’m sure you’ll join the vast majority who tolerate it very well. Re flights - I’ve taken flights of several hours each in the past month, and they were no problem. Lots of water - which will then make you have to go to the bathroom which will help you address the “move around often” advice too!

Thanks Wiley! Great talking to everyone who has this crazy ‘thing’ - makes me feel not so alone!

And good to hear that the hydroxy meds aren’t giving you grief!

Hi Deefen

Welcome to the Exclusive club, unfortunately not by choice.

I was diagnosed in 2008 with ET JAK 2,Negative and now CAL R positive and post ET Myelofibrosis.

My main advice, understand as much as you can about your new condition, ask as many questions as you need, you will always get good sound advice on this forum and through MPN Voice website.

It’s great to hear that you feel fit and well, and long may it continue.

All the best

Paul

Deefen
Deefen
in reply to SP-2008

Thanks Paul!

nature.com/articles/s41408-...

The above may be of use to you. You will have to scroll to the top of this article.

Deefen
Deefen
in reply to mhos61

Thanks! That was a very informative read.

Sorry to hear of your diagnosis, but it shouldn't change your life too much. Like you, I was first diagnosed through a standard blood test. At first my haematologist prescribed only low-dose aspirin (twice a day due to the proliferation of platelets vs the half life of aspirin). This was based on his feelings that although I was officially high risk due to chronological age and JAK2 status, in his opinion, I was "physically" younger - low blood pressure, good body weight, physically active, no diabetes, etc. Then, about 18 months ago, new recommendations came out which basically said that if you were older than 60 and JAK2, you were high risk regardless. I began on hydroxyurea - we've been playing around with the dose to keep things in balance. I have had no serious side effects with the exception of occasional fatigue which doesn't stop me from walking/hiking trips, yoga, light workouts, etc. My haem also suggested compression stockings for long air travel (and jokingly said he prescribed traveling first class - alas the budget doesn't allow for that). Good luck on your travels. Don't let the diagnosis worry you too much

Hi, I was diagnosed the same age as you with ET from a random blood test!! Just started on aspirin to help prevent blood clotting. I am now 66 and still continuing on aspirin. Just received my 6monthly blood results platelets 701. I see my heamo specialist in 2 weeks for my yearly check up. I still feel great. Working almost full time and no symptoms of ET. Just keep postive, eat well and exercise which seems to be the best thing we can do for this crazy disease! Best wishes Lyn NZ

Deefen
Deefen
in reply to Lindiloo3

Thanks Lyn - that’s very reassuring to know. I’m definitely going to keep up my gym routine and continue to eat a keto diet.

Please keep in touch with me!

Dee

Lindiloo3
Lindiloo3
in reply to Deefen

Hey Dee I am very interested in this Keto diet? it is all the rage here in the Hutt valley/Wellington and at work (hospital) My daughter has just started on it. I wondered how it would go with our blood disorder!! Very keen to lose a few Kgs!

Lyn

Deefen
Deefen
in reply to Lindiloo3

Hi Lyn,

I’ve lost 11kg since Feb on keto - now at my desired weight. Keto can only help with our condition as it’s very anti-inflammatory. Keto is also used as an adjunct in more serious cancer as it’s believed to starve tumours of fuel as your body ends up running on ketones for energy, not glucose. Ironically, I was feeling amazing after 8mths on keto before this diagnosis 😒 Can’t blame keto as my blood test results show a gradual rise in platelets over about 4yrs.

Watch the free doco ‘The Magic Pill’ for more info on keto (it’s on Netflix) and read books like ‘Keto Clarity’. I can recommend more too if you get serious about trying it.

Lindiloo3
Lindiloo3
in reply to Deefen

Hi Dee, thats so good! Thanks so much for the info. Will definitely look into my options. Lyn

Hi Deefen, just curious where you live , I’m almost exactly same situation, fluxuate in the 600s only been on aspirin 59 years old and my oncologist says no need for other meds at this time. I’m in Florida

Deefen
Deefen
in reply to Chuck309

I’m in Australia, Chuck,

Welcome, let’s hope you remain symptom free. Keep fit. I’m the same age as you. I’ve travelled long flights. Don’t worry about them. follow the advise you’ve been given and you will be fine. For piece of mind, may I suggest extra leg room seats. It will allow you more room to stretch and inturn ease your mind. Enjoy Europe we have some stunning sights.

Deefen
Deefen
in reply to Wyebird

I’ve splurged on business class this flight - and have told my husband that due to my condition, can only fly business class from here on 😉

Think he’ll believe me??

Wyebird
Wyebird
in reply to Deefen

Love it!! I told my husband I didn’t know how I was going to be so I was going around Spain on a train. I went with. Friend for 3 weeks we still laugh about it.

GOID FOR YOU!

Hello,

I am like yourself, diagnosed in 2016 at the age of 60 with ET JAK2+, platelets were a bit over 1000 at the time. I am fit, have always been healthy and the diagnosis came as a shock. I have suffered from background fatigue ever since I was a teenager. The fatigue could have thousands of causes but it has not stopped me. I know someone else who is about 77 years old with ET and she is doing relatively well, still active and not hampered by fatigue. So the ET condition may have many prognoses. Most people get something in old age, like diabetes or heart problems. Do not despair. Your healthy lifestyle may offer protection. They say there is no known cure for ET but I do not believe that. I am looking for a cure and I believe some sort of a change in lifestyle is needed. As for long haul flights, I flew from London to Brazil and back last November without any protection and I was fine.

Deefen
Deefen
in reply to Searcher56

Like my husband said to me - it’s a very long-term disease and who knows what cures or treatments medicine will come up with in the next decade or two?

Hi Deefen

Welcome to the group. Like yourself I was diagnosed with ET Jak2+ after being referred by my GP following a routine blood test which showed my platelets to be high.

That was over 14 years ago when I was 47 and since then I have frequently flown on long haul flights with no problems. Like others have said it is crucial to stay hydrated and exercise frequently while on the plane. I also use flight socks.

Until I was 60 I just took aspirin, but since reaching the magical age and being deemed high risk I am now on hydroxy and have started to suffer from the odd bout of fatigue at times. However, I still exercise and feel better for it. Carry on living your life to the full.

Good luck and best wishes

Ian

Deefen
Deefen
in reply to isimmy

Thanks for the advice Ian!

Greetings, ET, 60 with MPL mutation, the least common driver mutation. I am higher risk for progression to myelofibrosis than a clot. Diagnosed at 57, currently just aspirin. Fatigue is my biggest challenge, just have to plan to conserve energy.

I have learned a lot from my fellow ETers! Not sure if you know about vitamin k, but it can increase clotting and is abundant in healthy green stuff like kale and spinach. Something we have to be mindful of.

Never learned this from my specialist, but you will find learning all you can very important. They are learning more and more about the mutations and their prognostic significance, knowing all about your mutations is very important.

Take good care.

I am recently diagnosed ET jak2+ since March & also just turned 60 last week. I find it fascinating that you are on a ketogenic diet & feeling so good. I too have been on it since August and have been telling my husband that I haven’t felt this good in decades. No tiredness, no aches and pains & just feeling awesome. And for the first time since I was in my 40s I am sleeping well. I’m glad to see it isn’t just me.

Yes - it has amazing benefits! Many of my friends are still sceptical but we feel we’re walking proof it works. I’m the slimmest I’ve been since my 29’s with little effort and no hunger.

But now I’ve had this diagnosis, even more reason to seriously stick to it. I sleep like a baby, have lots of energy to work out every day and zero inflammation. At present we’re travelling in Europe so we’re off keto for a month - I can already see my stomach starting to bloat and my fingers are getting stiff.

Indigo - I brought up the leafy green veg/K2 link with my haematologist before I left and he said not to worry about it - mayby my platelet levels aren’t high enough yet? He did say to try to include fish oil, turmeric, garlic in my diet - which I do, plus supplement - as all of these have an anti-platelet effect. I’ve also added gingko and shittake mushroom do - esp shiitake mushroom - and it’s drkucious added to stir-fries anyway.

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