newly diagnosed ET jak 2+: HI this is my first... - MPN Voice

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newly diagnosed ET jak 2+

HI

this is my first post as I'm new to this forum

I am newly diagnosed with ET jak 2 + 3 weeks ago at the age of 52was told this is very rare at my age I live in Australia

its been a whirlwind and a great shock but just getting my head around the disease with all the great information I've found on the internet through these forums

my platelets were a 1000 when I had first blood test and are now still 700+

I'm taking 1000 mg hydroxyurea a day and an aspirin

How long do platelets take to get to normal levels?

I'm going overseas in 3 months on a long haul trip so very worried this will impact me going

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Hi. I was glad to find this friendly and helpful site when I was first diagnosed with an MPN nearly 3 years ago, and there are even more resources out there now. This is just a quick “welcome”, as I’m in the UK and its getting late for me, but I wanted to say I must have made at least one round trip to

NZ before I was diagnosed, with no treatment , and it went fine. Just the usual advice to drink lots of water on flights and keep moving.

Rachel

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thank you Rachel

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Hi Kazza and welcome to the forum.

Just to say, one of our forum members (Steve from Sydney) has set up an MPN forum in Australia. The link below should direct you. You are still welcome here of course, just thought I’d mention it.

Everyone responds differently to medication. I have ET Jak2+ and was put on hydrea at diagnosis. My platelets were only 500 but they reduced to 288 within a couple of months. Presumably you’re on aspirin too? Hopefully, your platelets will have reduced even more by the time you’re due to travel. As Rachel has already mentioned stay well hydrated, wear flight socks and move around the plane. Even when you’re sitting rotate your feet from time to time, all good for the circulation. Plenty of forum members have done long haul.

Mary

healthunlocked.com/api/redi...

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thank you I've joined the Aussie one too today

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Hi and welcome to our group. I’m in the U.S. and it’s late here now so I’ll just quickly say to wear compression socks, as high as you can, walk as much as possible on the flight, do the foot & leg exercises while seated, as already mentioned, stay hydrated, avoid liquor, caffeine & salt. Most importantly, have a great time!! Hope to see you on here again. Katie

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hello Kazzaa and welcome to our forum. MPNs are very rare and it used to be thought that it was something people acquired in later life, but people of all ages are being diagnosed all the time now. Glad to hear that your platelets are reducing, reduction of platelets is very individual so there is no specific time scale as to when they should reduce and by how many, and they will fluctuate, this is quite normal so don't panic if they do go up sometimes, your haematologist will keep checking the levels and may make adjustments to your medication.

It is a lot to take in when you are first diagnosed, I would suggest you read as much as you can on our website mpnvoice.org.uk and also visit the new Australian website set up by Steve one of our forums members MPN Mate mpn-mate.com/.

Kind regards, Maz

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Thankyou all for your reassurance

I'm reading more and more each day, so not getting as freaked out as I was at the beginning

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Try not to worry too much . People live a normal life with ET, PV and MF.

Ask about travelling you may need a blood thinner injection for long haul.

Have you had a pint of blood off .

I've read up on other people travelling with ET.

My husband has PV he's just took aspirin and hydroxy we've always gone on holiday.

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I was diagnosed with ET over 30 years ago. For most of that time I managed on aspirin-only and never had any thrombosis. Even when my ET progressed to PV, I still had few symptoms. My biggest direct PV symptom was Stage 1 hypertension due to blood hyperviscosity. That is under control now with tx and typically run around 115/75. Be assured that as scary as it is when you first find out, the ET can be managed and you can carry on with a good quality of life. I have flown all over the country and travelled all over the world with an MPN and never had any issues because of it. Do take time to learn more about what all this means. Since you are JAK2 positive, you might find, as I did, that the secondary symptoms related to inflammation are actually more bothersome. here are a some information and resources I found helpful.

JAK2 = Janus Kinase 2 gene. The JAK2 gene is comprised of a set of alleles. When some of these alleles become mutated, then you are JAK2+ - typically results in either ET or PV. The percentage of the alleles that are mutated = JAK2 Mutant Allele Burden. Speaking broadly, people with a JAK2 burden less than 50% will have a milder course of the MPN. There are a number of factors why this is so. JAK2 signaling drives hematopoiesis (thrombocytosis, leukocytosis, erythrocytosis). It is also thought to trigger thrombosis. Emerging research is focusing on the role JAK2 signaling play in increasing the production of inflammatory cytokines. The cytokines appear to be responsible for many of the secondary symptoms we all experience.

Here is one reference about the JAK2 Mutant Allele burden. bloodjournal.org/content/13...

Here is a reference to the role of inflammatory cytokines in MPNs ncbi.nlm.nih.gov/pmc/articl... .

There is a lot more out there on these topics. Takes a bit of effort to find the information - but knowledge is power and worth the effort. Hope this helps.

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I was 53 when diagnosed

On aspirin for 7 years

Was put on HU when I was 63z

No thrombotic events or symptoms

Platelets were 550 but due to age had to go on HU

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Hi and welcome. I was 36 when diagnosed and am 56 now. Best thing to do is to see an MPN expert. Have fun on your trip!

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Hi Kazaa - I’m in Australia too and was diagnosed last year - I’m 62. So far just taking aspirin.

Re your trip - I travel a lot! make sure you mention your MPN when you arrange travel insurance - I organised mine through Medibank Private and they were OK with it after asking a few questions - I had to pay about $120 more for coverage though. And wear compression socks on the plane.

Dee

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I almost forgot

I must notify my insurance company

Thankyou for reminding me

Karen

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Hello. I was diagnosed at 52 as well, now I’m 63, also on hydroxy and aspirin. I flew to Israel from the states last summer for 2 weeks. The only symptoms I experienced that concerned me were frequent nose bleeds on the flight and during the trip. My boyfriend and I both got top of the line travel insurance, but thankfully, we didn’t have to use it. Like the others advised, stay hydrated, walk around the plane when possible, and enjoy your trip.

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Hi Kazzaa

I was diagnosed with MPNU 3 months ago JAK2+ and I totally understand the feeling. I am taking 2 aspirin for now blood platelets last blood test was 599. Had bone marrow biopsy and confirmed the findings. Just had another blood test (don’t know the results yet) and will have another one before seeing my specialist again early August.

But I was so glad to find this forum and as what Mary said there is also one in Australia just recently set up...

I’m from Australia too by the way...

I am so thankful to learn from others through this forum... everyone is friendly and encouraging...

welcome!!!

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