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MPN Voice
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Essential Thrombocythemia

Hello all,

I'm new to this site I have had Essential Thrombocythemia for 10 years and would like to talk to other people with this

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Hi Mandy74 I have had ET for just over 13 years I was diagnosed when I was 34. I recently found out I am Jak2 negative but CLR positive not sure what it all means but aside from fatigue I haven't had any issues. I am on Hydrea 2-3 per day and my platlets hover in the low 600's. feel free to ask me questions and I will help as much as I can. Do you have any specific concerns?

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What is jak2 and clr I'm still trying to learn even after 10 years

X

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Not entirely sure myself but they are classed as mutations in the cell (I think) Jak2 shows in about 50% of cases and CLR or it might be CLaR can't remember is in about 20% or there abouts. your Hem should know all about them if they don't I would advise getting another one 😊.

I would recommend mine he is super but I live in Sydney Australia and I think most people on this site are in the UK.

there is some info on the MPN website too so you may find that helpful

Kirsty 🌸

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Thank you kirsty

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Hi Kristy I am from New Zealand!! Would love to know how many members from NZ. No real support over here! Lyn

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Hi Linda

yes I know how you feel we don't have a decent MPN support network here in Oz either which is why I turned to the UK.

Will let you know if I come across anyone.

I think in Oz the Leukemia foundation deals with MPNs so may well be the same in NZ. That being said I haven't found any blogs and websites like MPN.

Best in Health

Kirsty

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Thanks Kristy, I was diagnosed last September with ET, CALR postive. While researching came across this forum. It has been great and really informative. My haematoligist is great, told me he gets all his guide - lines from the UK. I am only on aspirin at the mo. Not keen to go on any chemo med! !! Lyn

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Yes I was a bit nervous about it too but it has been fine and I have been on them for quite a few years.

I am hoping now that they have this ability to distinguish the cell mutations that they might come up with a more targeted treatment.

I believe that those of us who are CALR positive have a lower chance of further complications or the disease progressing to one of the other MPN's.

How old where you when you were diagnosed if you don't mind me asking?

K

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63. Dr said he wants to start HU when I am 65. That being the only reason to start. My platelets were sitting at 647 a few weeks ago. N

Highest they got were 950 when I was really stressed out, sort around the time of the diagnosis process.

.

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that's great mine hover around the 600's on HU :).

I got up to 1.2 million whilst they were trying to work out what was going on - that was a bit scary but again I didn't have any real symptoms except muscle fatigue and general fatigue.

Don't worry about the HU it isn't as scary as it sounds.

take care

Kirsty

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Thanks Kristy my elevated platelets were picked up on a random blood test in May last year and the rest is Hx. Thanks so much for the information about HU. You take care to Lyn x

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Hello Lindilo3 we have some similarities I'm Linda I started feeling unwell last May and was diagnosed with ET and Jak2 positive last Sept. I'm a bit older 66 and was told because of my age I'm in an at risk bracket so I was put on Hydroxy and asprin. Not much fun at times is it but overall not too bad, could be worse I keep telling myself.

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Hi Linda nice to hear from you. I haven't had any symptoms that I can tell from ET. Only high platelets which prompted investigation, in turn off to a haematoligist. My platelets are only just over normal so I am not keen to go on chemo drugs just yet. I will talk to my Dr in November at my next check up. Luv Lyn x

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Hi Mandy,

I have had ET for 17 years now, diagnosed in 1999 at the age of 19. I am on interferon treatment, and of course daily aspirin.

If I can help with anything, feel free to ask.

Best wishes.

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Thank you so much for answering back.

Have you had any side effects from the interferon?.

I have now got Rhumatoid and osteoarthritis which I'm really struggling with at the moment. The drs are trying to find weather it's the interferon that's caused it or not .Hope you don't mind me asking what is your platelets count now

Thank you

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Hi,

I only have the usual side effects, flu like simptoms and really excessive sweating, so far no arthritis. But I did notice that many people who have MPDs also have some form of arthritis, I don't know is it because we are more susceptible to autoimmune disorders or is it somehow connected to MPDs or maybe even interferon.

At my last checkup platelets were 648 and I am on 6 miu interferon 3 times a week. Here in Croatia pegylated interferon is not prescribed for MPDs, so I don't know if it would control the platelets better.

Are you on regular or pegylated interferon? And what is your platelet count?

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Hi

I am on 180 every 3 weeks when I was first diagnosed my plathletes were 1400 then went up to 1900 and I was put on 275 everyweek now my platelets are 489

Mandy x

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Sorry pegulated x

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Thank you

Have you developed any arthritis since you've been on interferon cause I have osteoarthritis and rheumatoid now and I'm on steroids the pain is horrific

X

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I just want to thank you all for your replies I feel it's a godsend finding this site . My family are amazing but it is so lifting to be able to speak to people who really know what your going through and to hear their experiences. So thank you all so much I think I have a million questions but I will spread them out i won't bombard you all at once and if anyone has questions for me please ask away

Mandy x

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Hello Mandy, welcome to our forum, I am sure you will find it friendly and informative, any questions you have please just ask. Best wishes, Maz

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I've been told I have crf (cancer related fatigue) which I really struggle with especially at work which causes me to have a lot of dizzy spells and extreme tiredness which is caused by the ET does anyone else have this

Mandy x

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All the time Mandy, it's normal, I just try and rest when I can but that's not easy. Exercise and fluid intake helps a lot.

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Hi, I was diagnosed with ET 5 or so years ago, I have been on Hydroxycarbamide for 3 years. My platelets went over 1000 at one time but were steady around 370 for a while, then they started to climb again, the hu was increased and they have started to come down again. I don't have many symptoms/side effects, a bit of "brain fog", tiredness, sometimes a painful spleen. At the moment I have a sore, messy toe which isn't healing and this has set peripheral neuropathy off in my foot, which is very painful - however I know things could be a lot worse.

Best wishes

Lizzie

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Hi

Yes I agree even though I'm in a lot of pain right now I always look at it could be worse.

What I am trying to get control of is I could be fine then I'll just suddenly burst out crying and don't know why

Mandy x

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Sometimes you just have to get the tears out of your system!! XX

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Hi

You are soo right . I find the more I try and stop them the worse it is god I'm so glad I've found you lovely people

Xxx

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Hi Mandy I was diagnosed 15 years ago now after two Tia's. I was on Hu for most of this time until it no longer controlled my pesky platelets. I am now on Interferon at 3mu 3 times a week. Visited my hem yesterday and again my counts are better than they have been. My platelets were 405 which whilst still above the magic number are acceptable to both my hem and myself. I am Jak2 negative and yesterday they also did the other test but not sure it will make any difference. I am grateful for Interferon not always an easy drug but in my case the Hu wasn't any fun either!

Please ask away people on here are fantastic and always eager to help.

Wishing you the best.

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Thank you so much I'm so glad I've found this site and everyone is so nice and for the first time in 10 years I don't feel alone don't get me wrong I have an amazing supportive family but having people to talk to who really know is so helpful.

So thank you so much x

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You are very welcome. I too have a wonderful family but you are so right all on here really do understand and that in itself I find comforting.

All the best x

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Hi Mandy, I have had ET for 30 years been on Hydroxy carbamide /urea for 20 of them .Forced me to retire early from a tough job , but today i keep well , sometimes fatigued but still find life fun .have long holidays on continental Europe with my caravan, hope I will be allowed to continue that. At age 71 its difficult to assign problems to Et or old age.

yours Town Crier

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Hi

It's so nice to hear how your doing as I worry so much because I have young children and all sorts of things run through my head and I don't want them thoughts

Thank you

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I had young children when I was diagnosed as I did not get married till quite late 37 . I am now eagerly awaiting my first Grandchild. Whilst the fatigue and bone pain can be a bit of a sod , life expectation is pretty well normal as long as the blood is monitored and corrective action is taken when it drifts away from normal.

all the best

Town Crier.

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Hi Mandy,

I have PV and i guess a similar age to you, i am 45.

I was diagnosed 3 years ago but know that i have had symptoms for close to 10 years before that. My sister who is 50 has ET, and was diagnosed 13 years ago.

I am Jak2 positive, for PV around 95% of patients are, wheras 50% is the number for ET. If you are not Jak2 positive you could be CALR positive, they are two different gene mutations found in MPN's, although it is possible to have neither and still have an MPN, i suspect at somepoint they will find out what has caused these people to have MPN's too, the Jak2 mutation was only discovered around 2005 i think and the CALR in recent years.

My understanding of why these mutations cause us problems are that they can control creation of blood cells, platelets etc...when the gene is not mutated it essentially tells the bone marrow to stop and start production and even tells cells when to die - imagne a top being turned on and off, when you have the mutation its like the tap being stuck on on.

The fatigue you have mentioned affects the majority of MPN patients...as can dizzy spells, the biggest issue to manage is the fatigue though, i find excercise really does work wonders in helping with this.

Welcome to the site

Paul

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Paul you explained that beautifully as well as or better than my consultant, thank you I understand it a bit clearer myself now.

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Thank you so much Paul for your reply .

After I had my son 10 years ago they done a bone marrow test at the hospital I used to be under and the dr there said to me "I've taken a nice piece of bone marrow here and if we don't get an answer from this then we never will".

So I'm still waiting and hoping that they will eventually find the reason for me because they said sometimes they never find a reason .

Mandy x

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Hi Mandy, I have jak2 and et have been on hydrea from beginning. My plteletts were over 1000 now mid 3's I was taking 500mg daily now on 1000 as the count was hovering around 430. In feb 2016 I had a dissected corated artery, the 2 days later a blood clot 1.5mil from entering the brain now am on warfarin, which my hemo says he is taking me off in oct. thank God! This is a great site and I am sure you will find many people willing to share. I live in Redcliffe, queensland aus. good luck

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Thank you i wish you well

X

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Hi, I was diagnosed with et a week ago. I'm 54. Blood levels are steady at around 920. On aspirin. It's all new and worrying.

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Hi Conno61

I hope you are feeling OK. It is a whole world of new information to understand and can be a bit overwhelming. I am 47 and was diagnosed with ET 3 years ago. So far I have been on aspirin apart from when I needed surgery for something when I had HU to bring the platelets down. Unfortunately I have progressed to MF and I am awaiting test results prior to a discussion about treatment.

I know it can be very challenging dealing with this new disease, it can be entirely manageable . Do reach out on the site if you have questions.

Best of luck

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Thank you and I hope all goes well for you. I will follow you on here so I can see how your treatment goes. All the very best, Ian.

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Hi Mrs Average - my wife is age 46 and just diagnosed with RT however the doctor said she will progess o MF within 5,10 or 15 years. Have you learnt anymore about why they can predict this? It's a bit scary and there is a little information we can find.

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Hi sobrien

I have not heard anything about being able to predict progression to MF. It may be worth asking the consultant more about this. Perhaps the combination of genetic testing and BMB results is indicative?

I'd definitely ask so that you both have a better understanding. Wishing you much luck.

Katherine

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I want to let everyone know about a drug my hemotologist put me on. It's anegrelide and has got my platlets down to 495. He says I'm doing great. Dona

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Hello

I have ET JAK2 Neg. I was diagnosed January 2016. I'm on 2000mgs HU daily and I double up on HU at weekends, which has recently been dropped to every other weekend as my platelets are in normal range. I'm also on heart tablets and aspirin. I also have POTS.

Angela

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