What age were you when your MPN was diagnosed? - MPN Voice

MPN Voice

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What age were you when your MPN was diagnosed?

MazcdMazcdAdministrator905 Voters

Please select all that apply:

524 Replies

I have primary PRV as diagnosed at 46 - believed to have been misdiagnosed for at least 10 years prior; now transitioned to MF and many other complications.

I am JAK2 positive : Have been on Jakavi for 18 months.

1994 et jak2 + 29 years old

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Hi Maz, PV & ET

I have ET diagnosed at 17

christiev
christiev in reply to mac77

How are you getting on

My son has ET (CALR+) diagnosed age 20 (only diagnosed 3 weeks ago)

Rickyd
Rickyd in reply to christiev

I was diagnosed at 18 with ET (CALR+) I'm now 48 had a SCT 2 years ago and doing well.

The treatments have improved alot from then.

christiev
christiev in reply to Rickyd

Hello

Would love to hear more about your MPN journey! My son is CALR+ and was originally diagnosed with ET aged 20 but then re-diagnosed with PMF a few months later following a BMB. He's well, has no medication and just regular monitoring. It is supposed that in the future he will need a SCT and one of his sisters is a 100% match which is good to know. Great to hear that you are doing so well!

Hi maz , I have p.v. Jak pos , 2012 ,I was diagnosed , violet x

ET with JAK2+

ET with JAK2+

ET with JAK2+

I am with ET, JAK2+

im suffering from pv

ET JAK2+

ET JAK2+

I am with ET, JAK2+

Hi Maz, PV JAK2+

I was diagnosed with myleofibrosis/myleodisplasia at age 63.

I had PVR diagnosed in 1983, but since about 2010 it is MF.

Hello Mazcd, great poll but just to make you aware - I wasn't able to tick several boxes (age, gender, what mpn), so only did the age. Thanks Andrea

Ashto70
Ashto70 in reply to akonline

Same problem here. Only able to click one selection.

Hi I was 58 when diagnosed am female and have MF. The survey wouldn't accept both age/sex and I was unable to comment.

I was diagnosed last year with ET at the age of 37. I am JAK2 positive.

Prv jak2 2010 age 52

Hi Mazcd, I was diagnosed at age 53, am female, have ET Jak2 and Exon12 negative.

ET jak2+

I was first diagnosed when I was 43 with ET, I was medicated with HU for about 2 years then came off them ,just took 75 g aspirin daily. Had a yearly full blood count . Platelets starting rising 18 months ago . Had BMB. confirmed ET so am now on 12 capsules HU per week .i am now 71 .

I was 34, when diagnosed with ET although looking back at blood results when I was pregnant with my first son, when I was 24, my platelets were high.

Karolinka1
Karolinka1 in reply to Murphy1

Hey. I’m 28 and was just diagnosed with ET jak2 positive few months after I had my first baby. My platelets started to go up... I wonder if pregnancy could trigger something

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

E.T...JAK2+...

Something has gone wrong...I didn't answer that many times...I can tell it has happened for others...

Diagnosed with ET at 46.

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ET

Hi Maz. It won't let me tell you my age as well as sex. As soon as I say female it deletes my age! I was diagnosed with ET aged 44 and Post ET MF at 62.

Secondary Polycythaemia diagnosed at 51

PRV Jak2+ 2011 at age 54

Hi Maz.....I was diagnosed with ET Jak2+ at age 28 but reckon I had symptoms from age 19 following Glandular Fever. I'm female and now aged 54. On 75mg aspirin only.

Prv jak 2 positive diagnosed 47

Male, PV. Diagnosed at 43.

Thanks Maz.

Craig

Mazcd
MazcdAdministrator

sorry for the problem in only being able to select one option, I have now corrected this. Maz. And thanks also all of you for your response.

PRV JAK2 POSITIVE

PV and ET

I am female and was diagnosed with PV jak2 positive in November 2012 aged 67

Unclassified. Jack2 pos. Female . May 2012. Age 65

ET JAK2- diagnosed 2008 at age 47

ET JAK2 -

Hi maz

I have ET...diagnosed at 41, misdiagnosed ten yrs prior.

I have ET JAK2 +

Essential Thrombocythaemia / JAK2 neg - Diagnosed 2003 at the age of 33.

Meds: Peg IFN alpha 2a - 45mu per fortnight / Aspirin - 75mg per day.

ET Jak 2+

Pv jak2+

PRV Jak2+, No Official Meds.

PRV 2014 aged 43

ET, JAK2+

Hi Maz

ET, JAK2. Hope you're enjoying the fine weather! :) All the best Maggie

Male aged 50 PV .JAKpos

Mazcd
MazcdAdministrator

Hi Magg, yes enjoying the sun today, thank you, just hope all the thunder storms have finished now. Maz x

I have MPN unspecified. JAK2 positive. Diagnosed at 40.

ET. JAK negative. On Hydrea and Aspirin. Aged 47 when diagnosed.

I have PV ,diagnosed four years ago at 70 years,,take Hydroxy,& other blood thinners

Maz,this might be my 3rd reply,I have P V. Diagnosed 4 years ago aged 70 .Take Hydroxy and other blood thinners.

I have ET and JAK 2 positive. Although I pointed out my accelerating platelet count to primary doctor it had been going up for at least 8 years. When it hit almost 1 million my doctor agreed to send me to a hematologist it was immediately approved. Then bone marrow biopsy to rule out MF which was negative.

PMF diagnosed at age 51

Pv xx

Hi I have pv diagnosed at age 53 2013

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E.t

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E.t. jak 2 neg .

I must be the oldest kid on the block! How dreadful for all you young people to have to suffer these ghastly MPD's that most people have never heard of, including G P's.As we look fit as fiddles (except when brick wall hitting)Not too much understanding either.Thank you Maz for this site,enormous help to me and my husband who has so much stress dealing with it all

I have ET Jak2 +

I have ET

ET

ET JAK 2 positive

Hi Maz - I have PV, diagnosed at 39.

ET

PV diag 53

Kye

Hi Maz, I have ET (jak2 neg)

PRV

I have ET and PCV JAK2

I have ET.

I have ET diagnosed when 61 but I did not take any meds until I was 65 now 69 and feeling good, most days. Interesting data.

PV at 48 jak2 negative

Hi I have ET JAKE 2 positive diagnosed 4 yrs ago, now 69.

Hi Maz, have responded to the survey, this is the additional comment. I have ET, although diagnosed at 38 yrs - when pregnant - it was noted at the time, that at least one of my blood tests - prior to diagnosis - the raised platelet count had gone unnoticed. I believe I had it for a few years prior to diagnosis. I started on aspirin for about the first 8 years, have now been on HU for 10 years and am JAK2 positive.

PV

I have PV took a considerable time to be diagnosed doctors who had no knowledge of illness. Resulting in me having multiple silent strokes and very intensive treatment to get bloods to a safe level.

Our son was diagnosed with PMF aged 37. He is jak 2 negative

I have PV

That's PV JAK2 pos diagnosed aged 60

jak positive ET

ET

ET Jak2 negative

PV Jak2+ diagnosed at 47

PRV Diagnosed at 41 (just inside the upper category) but symptomatic for a year beforehand so developed it at the age of 40. Has anyone handled any toxic chemicals? that myight be a useful poll. I had an incident in my ealry 20's with inhaling some cellulose paint (Xylene, cellulose thinners, chrome compounds in the pigments)...i've often pondered on the environmental factors that may have influenced this. I do suspect i get sleep apnea events if i sleep in a certain position, make me feel awful in the morning and wakes me up with heart racing after getting adrenalin shot. Doctor's questionairre didn't warrant me going for sleep tests though i might raise it with my haemotologist.

Hello Maz! ET and Jak2-.

ET JAK2 negative

ET

Hi Maz, I was 61. when told I had, FM, found it hard then, and find it still hard now. But this site and the people on it, helps a lot, Thanks Everyone. Bernard.

I have PRV and currently being treated with aspirin and regular venesections.

Sorry, forgot to say that I was diagnosed at 49 although I think I had this years prior to the diagnosis in the summer of 2009. I am also Jak2 positive.

Hi Max , I have PV.

I was first diagnosed with MF 2 years ago. A month ago, I was, also, diagnosed with PV after another CT. I don't know much about either. Tomorrow I go for blood letting. I think thats what its called. I'm going to try to find out more then.

ET Jak 2 +.

Many than

Hi, I'm now 66 & was diagnosed in with Primary PV in 2004 when I was 56. My GP (at that time) reckoned I had the symptoms when we moved to the area in the year 2000. I had experienced mild symptoms of PV for some years prior to that but of course did not know. I have been on Hydroxycarbamide since late 2006 - very well looked after by Castle Hill hospital in Cottingham, just outside Hull.

Pv

Diagnosed with PRV at 71

I have e been diagnosed at age 46

I was diagnosed at 60 in 2010 with ET and JAK2 Positive after a blood clot in the brain. The condition had been silent for many years. The doctors believed I have had it since around 1988.

Hi Maz I have ET diagnosed at 51 - now 53 - diagnosed following a portal vein thrombosis. Jak 2 + also. On hydroxcarbamide 500mg 3 x a week this is quite recent.

I have ET and was diagnosed aged 39.

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E T Jak2 +

Hi - I've got myleofibrosis & Polycythaemia Vera - diagnosed when I was 64

ET diagnosed 2 years ago. Jak 2 positive. Great support from local haematologist who understands my reluctance to go on chemo but says once platelets hit a million, then no argument. At present, apart from bad night sweats, v active.

Hi Maz

Pv & ET Jak2 positive

;0)

I have ET Jak2 positive

ElsieR
ElsieR in reply to ElsieR

Aged 74 when diagnosed but had symptoms 4 or 5 years before

ET. JAK 2 positive for MPN disorder. Mwalimu

I have ET, JAK2 positive, diagnosed in 2007 - aged 47 at time of diagnosis

I was diagnosed with ET 2 years ago but changed to a specialist clinic at another hospital a year ago when I was told it was more likely PV that I have which is what I'm being treated for. I am JAK2 positive.

Diagnosed ET Jak2- in 2010 aged 63

PV,JAK2+, interferon for 8 years now on Pegasys (6 weeks). Diagnosed at age 48/49 although as for many almost definitely had PV for at least 8/9 years prior

PV, jak2+ 38. Melanie

suska
suskaAdministrator

Hi Maz I was diagnosed Jak 2 positive aged 56. Thank you xx

I have Primary PV and am JAK2 negative. Venesections and aspirin.

ET

ET

I was diagnosed with ET in 2009 then MF in 2011 Jake 2 neg

Hi Maz, I have PV, Jak 2 negative. Kind regards Aime

Hi Maz, I was diagnosed when I was 55, now 57, did tick the age box. Kind regards Aime

I have ET, I am 45 and diagnosed in April 2013 on 75mg aspirin only.

ET

I was diagnosed with Essential Trombocytosis (ET) in 2009. I was 30 years old at that time. I am JAK2 positive and have been treated with interferon for 4 and a half years. Currently I am on an experimental temporary pause in the interferon treatment and am only treated with aspirin every day and bloodlettings once a month or so - but only if my hematocrit value is above a certain number. I believe it is 48. My doctor believes in the theory that the right diagnosis is actually Polycythemia Vera (PV), when the hematocrit value i above that number, which is why I sometimes am diagnosed with ET and sometimes with PV.

Et

PV, and 40's

ET

Hi Maz, I was diagnosed with ET at the age of 42, (7 years ago) I had a very unusual bleed followed by a heat rash from mid-thighs upwards. I went to see my GP blood tests were taken and after a year of monitoring every 3 months I was officially diagnosed with ET JAK 2 positive. My platelets started at 670 and rose to 900 very unstable at this time. I am taking aspirin only. The platelets have now stabilised around 640, and I am only requiring yearly checks. Aprilcoo

Hi Maz I was 60 years old when diagnosed

ET

Hi Maz

I have ET JAK2 negative diagnosed 18 months ago at age 67.

Hi maz I have ET diagnosed 2007 aged 52

I have polycythaemia undetermined cause, JAK2, EXON12 & CALR negative. I understand it would be very unusual for me to have a true MPN. I'm being treated by venesection only.

I was diagnosed with ET in 1995 at age 34 but definitely had undiagnosed in 1986 (aged 25); just been diagnosed with the Cal-Retic gene.

polycthemia vera

I have Polycythaemia Vera with the Exon12 mutation. Diagnosed in 2013 and am treated with regular venesections.

ET JAK2+

I have E.T.jak2 positive

PV

Hi Maz, PV?ET jac2 pos and now seem to have an acquired Von Willibrand syndrome

I have ET

Polycythaemia is my dx 7 years ago

unclassified

Kim2795
Kim2795 in reply to Shelly1960

Me too

et

Et 2008, platelets 2000

Originally misdiagnosed with MDS in 1991. Correctly diagnosed with PMF in 2011. 23year history with minimum complications, excepts rollers coaster blood counts with blasts & of course ongoing fatigue.

primary myelofibrosis JAK2+

Hi, PV I am JAK2 positive

Hi Maz ,

I was Diagnosed in 2013 with

ET Jak2 positive ,after Tia & platelet count 900 , Pam x

Hi - have ET and was diagnosed when I was 38 - 19 years ago.

Jak2 positive PV, diagnosed aged 33.

PMF

Pv

ET jak2

#

PMF

PV

I have pc

Hi Maz , I was 51 when Dignosed with ET

Jak 2 Possitive , , love Pamela from Newcastle upon Tyne ,

ET

My daughter was diagnosed with ET CALR+ at 16

I was recently diagnosed with Primary Polycythemia Vera JAK2+ at the age of 53. My sister, who is 5 years younger (48) was diagnosed 2 months before me with the same diagnosis.

Myelofibrosis

PV diagnosed in2008 at 39 years old. Heart attack in 2004 which specialist now thinks was begining of PV but then heart meds kept blood counts down for a few more years. Went straight onto hydrox after jak 2 pos confirmed PV.

Myelofibrosis

Ooh i'm terribly sorry I completely missed that I need to add my diagnosis, I have Idiopathic Polycythaemia. (Polycythaemia of an unknown aeteology)

Pv jak2+

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I was diagnosed at age 35 with ET

Polycythaemia - undetermined cause - secondary causes ruled out - treated by venesection every 3 - 4 months

PRV and diagnosed at 52 ~ but I had a stroke at 50 and it was confirmed only last month that PRV was the cause. I've been having PV symptoms since I was in my mid 40's.

PV and ET

Diagnosed with PMF at 44.

ET, Jak 2 at aged 31 yrs

PV JAK2 negative, diagnosed 2 years ago while looking for something else.

PV JAK2

Diagnosed in 1999, ET, JAK2 negative

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Polycythemia

ET, JAK2 negative

PRIMARY PCV-on asprin and blood letting

PMF

PMF

I have PV

pv

Hi Mz, I am with ET JAK 2+ diagnosed at age 62 and now on Peg Interferon Alpha 2 for a year. I take 135mc every three weeks.

ET

PV Jak2- age 48

I am new here. I was diagnosed a few months ago ET Jak2 positive. I am blessed to have no symptoms and my platelet count is still not critical. I am being managed by a hematologist with TX oncology. Looking forward to learning more and becoming secure in my knowledge about my disease.

ET, CALR

Primary Myelofibrosis, low risk.

47

ET, Jak 2 positive.

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Here is my 47 history with battling PV and Spherocytosis:

Roughly in 1968-9 my dad age 37 and born 1931 in Chicago had visited the VA hospital and diagnosed with both PV and Spherocytosis. He was hospitalized at the VA to undergo a splenectomy. I do remember my Mom taking my sister born in 1959, brother-1961 and I-1963 to the VA to visit our Dad. I was later told that the VA doctors had requested his children and other direct relatives including his Mom-1890's in Poland, his brother born 1917 in DE, his sister born 1924 in Chicago also go undergo blood tests for PV. His father born in Poland died in 1950's around 55-60 years old. My VA lab results and exam showed I also had PV and Spherocytosis so I was hospitalized at the University of Illinois near the VA. My poor Mom had both my Dad and I in different hospitals undergoing splenectomies for PV and Spherocytosis and two kids age 10 or less at home. I have clear memories of my stay at U of I including the name of my surgeon.

Once my Dad and I were released he visited the VA for regularly scheduled phlebotomies. He later also had a peptic ulcer and hospitalized again to remove 2/3 of his stomach. He died in 1977 from arterioschlerosis. He was a smoker. My Mom passed away with similar issues in 1987. She too was a smoker.

After my surgery I visited a specialist at the U of I for a few years and went on to enjoy my life with no PV issues. At the age of 29 I was diagnosed in Denver with my first PE in 1992. It was contributed to driving from Chicago to Colorado border in a day. I was prescribed Coumadin for a few months. In 1993 I was diagnosed with my second PE. Prescribed Coumadin continuously. In 1997 I underwent my third PE so I was required to have continuous visits to my hematologist throughout the year after being prescribed phlebotomies regularly. After a couple years my lab tests showed my body fought harder to keep my red blood cells at the same level. My Hematologist stopped phlebotomies and prescribed Hydroxyurea. After a couple more years I was not feeling well and Anegrelide was added to my drug routine. In the latter part of 1997 I was also required to visit a Pulmonologist because of breathing issues. Then I was also diagnosed with Asthma, Sleep Apnea and most recently (approximately, 6 years) PAH. In 2000 I was diagnosed with my fourth PE. My Internist disagreed with my Hematologist whether or not my lung scan reflected a new clot or scarring from my previous PEs. I was admitted in hospital by my Hematologist and treated for a PE. In the last few years after being diagnosed for PAH by a Cardiologist who was recommended by my Pulmonologist he determined my best RX step forward, Revatio and Sildenafil. I was referred to visit Dr. Stuart Rich since my first Cardiologist felt it would be best for him to be my doctor. Since then I regularly visit Dr. Rich. His new location is Northwestern Hospital, Chicago.

I hope my 47 year history of PV helps someone. Has anyone else been diagnosed with PV for this long?

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Diagnosed with PV around 5yrs of age.

I have ET and am Jak2 positive.

Diagnosed with PV, jak2+, 2012.

Diagnosed in 2014. ET, JAKt. But new specialist says I also have some low risk MF. Suspect ET began years ago because of TIA. KatieWalsh. On HU & Eliquis.

JAK2+ PRV

ET and JAK2+

I was 53 when diagnosed by had had symptoms for at least 10 years.

Polycaethaemia

Et JAK 2 positive

ET

Post ET MF

PV

PV

I was diagnosed close to my 64th birthday. I had symptoms for around 2 years prior. PV /early PM

JAK2 positive on Hydoxurea 500mg X 10 per week.

Male

ET aged 53 around October last year 2015

I was diagnosed with ET at 35, this changed to MF which I was diagnosed with at 46

PV   diagnosed recently at 78 years old .            realise now that many symptoms have been ignored unrecognised or  misdiagnosed by my GPs ,  

HEllo Maz I am nearly 78 and recently diagnosed PV at Heartlands Hospital Birmingham.  

ET

I was diagnosed at 48 with PV (but likely had it since I was 45)

polycythaemia rubra vera

ET

Initially ET now changed to MF

PV which progressed to myelofibros

I was diegnosed with ET 13years ago, now transformed to MF been on Rux about 3 months

ET & PV Jak2+

ET Calr+ 5 bp insertion

ET

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ET - Diagnosed at 44

PV

Nice poll, would have been interesting to split the 41-60 age group into 41-50 and 51-60, as this is where most have been disgnosed. In my opinion it is quite different to be diagnosed at 41 than at 60 years of age.

Diagnosed with ET at 19yrs old Female

Polycythaemia

ET

ET diagnosed at 52

Prv

Jak2 negative PRV

I have MF

Myelofibrosis

ET

Husband has pv jak2 positive diagnosed at 41years old

I'm between ET and PV somewhere apparently

I have PMF CALR - diagnosed when I was 43

Hi I have EAT

ET

I have PV

I have PV

Cmml, which is classified as mds/ mpn. Dx july 2016 65yo

I have recently been diagnosed with Chronic lymphocytic leukaemia and POLYCYTHAEMIA VERA JAK2 positive

I have ET PV and am JAK2 positive diagnosed at 36

ET and PV and am JAK2 positive was diagnosed at 36 and on interferon as had a stroke at 26 x

Prv

PV jak 2 positive

I have PV and diagnosed at 53.

PRV at age 46, JAK2 positive. Lived well with venesection ( mostly six weekly) for 27 yrs. Had itch and acne rosacea. Probable progression myelofibrosis two years ago- enlarged spleen, gout, low platelets and wcc drifting up. Not on any active treatment yet, except for the gout and acne rosacea. Suffer from fatigue and bruise easily.

ET

ET JAK2+

P. Vera

ET

Diagnosed PV JAK 2+ 2017 but in reviewing past CBC's have been misdiagnosed since at least 2009. Was told I had iron overload and to therapeutically donate blood to bring down my iron. Phlebotomy and aspirin, but my symptoms are not improving.

Mazcd
MazcdAdministrator in reply to DLaux

hi DLaux, it does seem that many of us had symptoms and signs well before we were diagnosed, I am sorry to hear that your symptoms are not improving, speak to your haematologist about this, ask if it may be worth trying some medication to help. Best wishes, Maz

Didgeridoo2
Didgeridoo2 in reply to Mazcd

Recently diagnosed with thrombocythaemia, & a month.later, myelofybrosis. Was very unwell last week, so phoned haemo. for advice. Was referred to consultant on phone, who I didn,t want to bother. Was given appt. for this morning, & was so dismayed to be told that the symptoms I have (& led to diagnosis) are not related to my condition. Can,t begin chemo. med. till corovirus ends which I understand. Dismayed because if symptoms I have are what took me to gp. originally, this doesn t make sense. I,ll never ask for advise again, & just get on with it, which I was doing anyway. Apologies for lengthy post as I ve cared for others all my adult life Hubby has dementia, & I accept this with no input from anyone, & I only wanted advise for dreadful headaches. Thank you for reading this. X

Mazcd
MazcdAdministrator in reply to Didgeridoo2

Hello Didgeridoo2, I am sorry to hear that you are having problems with symptoms, what exactly are they, is just the headaches or are you having other symptoms as well? It is a shame that you are now unable to start your medication, what have they suggested, is it Hydroxycarbamide? And are you taking aspirin? Best wishes, Maz

MF, diagnosised just 5 days ago. I have no idea what is coming next, but I will learn fast no doubt. I live in Weston super Mare.

ET diagnosed around 1992, sMF January 2016. CALR+. Gout controlled by Allopurinol.

ET CALR+

39

MF (U) triple negative

Just been diagnosed with Essential thrombocythaemia

PV, JAK2+, diagnosed 2015 at age 36

E.T. Diagnosed last week Age 45

ET JACK2 Positive

I have Myelofribrosis (High Risk DIPSS+) which was diagnosed over a year ago but only recently started on Ruxolitinib as was hoping for stem cell transplant but that has been ruled out because of lung problems

Just diagnosed with primary MF a couple days ago. I'm female, 38 years old and JAK2+

I was diagnosed in 7/17 with ET. I had a bone marrow biopsy and started Hydroxyurea that day. I am JAK 2+, CALR - .

I was 65 years of age at diagnosis.

ET

ET

I have ET JAK 2- and am being investigated for CALR & MFL

ET JAK2+

ET

Et

ET Jak2+ aged 53

PV JAK 2 diagnosed 2016 but estimate started ET 2012. Age 62. Male. Only symptom a bit of itching. Two monthly Venesection and aspirin.

Pv

Hi Maz. I have ET diagnosed this year.

John

ET With Exon 10 (Only 24 of us in the UK - Never found anyone with this - Exon 10 is next door to JAK2)

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JAK2 positive Polycythemia vera. Diagnosed July 2016

ET

ET JAK2 + diagnosed at 55

Hi, Early days (only 3 weeks since diagnosis) but it would appear to be ET

Primary PV

aged 41

Essential Thrombocythemia

Essential Thrombicythemia JAK2+

Essential Thrombocythemia - JAK2+

Diagnosed September 2017 , 45 PV jak 2 negative

MF, JAK2 positive on Jackavi

Essential thrombocythaemia

44

E.T. Diagnosed at 60.

ET CalR

I have ET

Hello I have ET JACK 2 positive

Hi Maz ET x

Hi I have Et jak2 positive diagnosed age 45

JAK2 positive, ET...bone marrow biopsy shows progression to MF.

MyeloFibrosis

I have ET (triple negative) diagnosed at 36 (now I am 37), with 1.7000.000 platelets count, and no meeds prescribed by my doctor.

I have PV, JAK+, diagnosed at 45.

ET JAK2positive

JAK2 +

Polycythaemia vera

PV

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Jak 2+ ET diagnosed at 36

ET with JAK2 positive, diagnosed 2004

Ploycythaemia Vera for 28 years, progressed to post PV Myelofibrosis three and a half years ago

Diagnosed with PV in 1980, told misdiagnosis and all clear in 2006, then ET diagnosis in 2013, now MF diagnosis in 2017. Jac2 -ve in 2006 but +ve in 2017. It's been a journey!

ET Jak2 positive diagnosed 2016 age 70 female

Polycythemia Vera

Pv

PV

ET JAK2 positive with platelets around 600K - only on two baby aspirn. Have lower leg pains pretty constantly, more severe after power walks or standing for long periods. I also have regular night sweats making sleep a bit of a challenge. Also have dry eyes, itchy skin after showers, and increased exhaustion that I counter with iced tea or other caffeine. Thankful life is pretty blessed and working hard to have positive attitude about these new things to navigate. Feel a bit lonely managing it - but SO very thankful for this site that provides incredible support and keeps me enouraged!

Myelofibrosis

I have PV diagnosed at 49 JAK2 +

PMF

I have ET (jak2 positive)

PV diagnosed in February 2018. Taking hydroxycarbamide daily 500 mg, clopidogrel, statins, and sertraline for depression. Age is 58 JAK2 positive. did take alpurinol for a few weeks to clear backlog of toxins due to too many red blood cells

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ET

Hidden
Hidden

ET

ET

ET

PV

PV diagnosed last year aged 56

My son has Jak2 PV , diagnosed last year aged 14.

Et

Essential Thrombocythemia CALR ins5 type 2

Hi Mazcd, I was diagnosed with ET CALR ins5 (type 2), over 2 years ago at age 57, currently only taking Aspirin but may be starting Pegasys early next year. However, hoping that Ropeginterferon will be approved and available on the NHS by then. Although, I understand that the main indication with be PV, so not sure if Ropeg will be available off label for ET. Fingers crossed !

Essential thrombocythemia

JAK2

JAK2

PV, just diagnosed at age 58

ET Jak2+

PV with high platelets, but normal WBC.. JAK2+. Diagnosed age 57, but blood tests show high blood counts at least 3 years earlier.

63

I have been diagnosed at 35.

ET

Polycythemia. Vera

Diagnosed with polycythemia vera 9 years ago.

I have MF in the proliferative phase.

Hi I have et mf

ET, JAK2-, Waiting on 2 more genetic tests, and bone marrow. Diagnosed in my 20s.

Hi Maz

My haematologist says i have ET at age 43. (last may) but because my bmb didnt work we are waiting to repeat it this year. So for the time being we are still documenting it as persistant thrombocytosis. (Platelets have been elevated for several years now).

Hope this helps

Mazcd
MazcdAdministrator in reply to ELIZBEN

Hi Elizben, thank you it does. Let us know the result of your next BMB. Best wishes, Maz

ET

ET JAK2+ diagnosed after 9 years of elevated platelets and fatigue, bone pains and many others confusing symptoms that GP didn't link. Chest pains and breathlessness, blurred vision & difficulty with thinking last 3 years especially.

On baby aspirin since November and feel half human again! So relieved to discover I'm not mad and not just suffering from stress or having imagined pains as I was lead to believe.

PV

I have ST Jak 2 pos

PV

Good afternoon.

I am ST.

wotan10
wotan10 in reply to wotan10

Should read ET.

Female 62.

diagnosed in 1994 and will be 53 this i fainted after having bath went to gp took bloods and sent to hospital after bmb was diagnosed with ET three clots later on hydroxyurea

best wishes

Nicki xxxxxxxxxxxx

I have PV diagnosed about 4 years ago age 48.

56

pmf

was diagnosed in 1994 was at wgh today dr Teh had jeans's replacement in with i got his Registrar but confused i was told by the much missed dr f et was cancer of the blood but jean did a letter for my pip and said it is cancer of bone marrow does not take much to confuse me i think i was in my late 20s

yours always Scottish terrier hope your doing okay

Mazcd
MazcdAdministrator in reply to Scottishterrier

hello my little Scottish Terrier, I am ok thank you my lovely, hope all ok with you all. This might help to explain: When a person is diagnosed with myeloproliferative neoplasm (MPN) something has gone wrong with their blood cell production. The bone marrow begins to produce either too many blood cells, or sometimes too few. There are three common types of MPNs, but there are other types as well.

MPNs are classed by the World Health Organization as a blood cancers because the bone marrow is producing blood cells in an uncontrolled way.

Maz x

cheers maz i was diagnosed as producing to many platelets hence the three blood clots i have always target the liver though but think i am lucky i could have had it lungs brain or heart as i scottish saying whats for you will no go by you best wishes

scottish terrier

I was diagnosed with Essential Thrombocythemia when I was 29. I'm currently 34.

ET CAL-R

Diagnosed with ET JAK2+ age 44 but haematologist said I'd had unexplained high platelets for the previous 9 years

PV, with the JAK2 mutation

ET - just diagnosed today! Also JAK2 +.

ET JAK

PV diagnosed at age 38

ET and PV

ET Jak2

ET

ET jak2

Polycythaemia Vera

ET Triple Negative

ET Triple Negative

ET Triple Negative

Essential Thrombocythemia

Male

PRV

Prefibrotic Myelofibrosis

I have primary mf jak 2 postive chronic liver disease portal vein thrombosis diagnosed at 24 after a csection

MF

PV diagnosed yesterday @ age 66.

ET Jak2 neg

PV

ET

Diagnosed 3 months ago with ET CALR

ET

MPN Unclassified, JAK2 V617 Positive

MPNU

I have JAK2 ET, I was diagnosed last year aged 36, but I have had high platelets since my first blood test in 2008 so who knows how long I have had it for.

I have ET with a splenic hemangioma. Diagnosis August 2019 with platelet count of 740. My platelets had been High for 10 years but GP hadn't told me or acted upon it until I complained of symptoms. Looking forward to gaining support and knowledge from this site.

56

I have Polystyrene Ruba Vera

I have PRV JAK 2 diagnosed aged 58.

I have ET and I’m JAK2+ I received my official diagnosis last month aged 37

Myelofibrosis

ET

PV JAK2+

PV JAK2+

Just turned 49.

Hidden
Hidden

CMML

PV

PV jak2 pos but have DNMT3A mutation (my husband)

Myelofibrosis

Diagnosed with PRV and ET - wth Jak2 mutation when I was 64 years old ( almost 4 years ago) but my consult said that blood tests requested by my GP had shown I had problems before this but GP didn't follow up the results.

PV , JAK 2 Positive diagnosed at 49

ET, diagnosed a few months before my 60th birthday.

ET

Polycythaemia Vera

I am replying for my son. He has ET Jak2+ and was diagnosed at age 17 (Dec 2019). Right now just on low dose aspirin daily. They have just given him the okay to add curcumin (turmeric)

Mazcd
MazcdAdministrator in reply to Nmom

Hi Nmom, how is he coping with it all, is he ok, and how about you? Maz

Nmom
Nmom in reply to Mazcd

He is doing much better than I. Our doctor is still doing monthly blood testing, but he only needs to go in for an in person visit every 3 months now. He hates needles so this is (in his opinion) the worst!! I’m trying not to watch him too intently, panic too frequently, worry too much.... I hate this being our ‘new normal’. I’m praying for a cure! Thank you for asking!

Prefibrotic myelofibrosis

ET

I was diagnosed with pre-fibrotic myelofibrosis in 2014 because of elevated platelets.

Mazcd
MazcdAdministrator in reply to Cindy12

Hi Cindy, how are you? maz

Polycythemia Vera

Polycythemia Vera

PV

ET.

Et

Pv

Hi Maz, I have ET JAK2 Pos

Essential thrombocythemia

Essential thrombocythemia jak2

ET JAK2

ET

ET Jak2+

ET with Jak2

Essential thrombocythaemia

Myelofibrosis

I can't remember if I've already voted on this. Diagnosed PV JAK 2+ aged 49.

ET and PV

ET (CALR+)

Diagnosis in Feb. 2020 of thrombocythaemia, & amonth later, myelofribrosis. ....?aged 69

ET

ET jak 2 positive

ET

ET

Male was diagnosed at 45 started with ET jack2 positive now prv Jack 2 positive. Found out I had slightly high bloods and inlarged spleen at 36 watch and wait.

ET

I was dx with ET JAK2+ at 37yo; I’m now 40yo and currently awaiting confirmation of secondary MF diagnosis.

I have ET, female.

ET

ET at 60 🌈❤️

ET

PV

Polycythemia vera

I have ET, diagnosed at age 58.

ET

PV

ET

ET JAK 2 positive. Just turned 77 in March 2020.

I have either PV or Pre-fibrotic myelofibrosis. JAK2+ diagnosed in Jan 2015 aged 48

I have ET diagnosed at 57. I am now 58. I have alot to learn

36 with Essential Thrombocythemia... Started seeing a hemotologist at 35 after having my first CBC.. It showed high platelets

PV

PV. Diagnosed at age 65. Female age 74 now.

ET diagnosed 2 days ago

Mood2020
Mood2020 in reply to Mood2020

I’m 35

Polycythemia Rubra Vera Jak2

ET. Diagnosed at 43.

Essential Thrombocythaemia

ET

ET + JAK2+

I have ET jak2 diagnosed at 53, but had abnormal blood test 2015 which the G.P. didn't act on when raised by hospital. I was feeling ill since before 2012.

Mazcd
MazcdAdministrator in reply to Yorkstyke

Hi Yorkstyke, how are you feeling now, hope all is ok with you. Best wishes, Maz

ET

PV Jakii

I have PV diagnosed at the age of 52 and am Jak2 positive

ET triple negative

PRV

I am JAK2 positive : Have been on Hydroxyurea 3 years,diagnoste at 72 years of age.

ET

ET

Hello there, I was diagnosed 12 months ago with ET.

ET

"Suspected" ET at 45 - confirmed ET at 51, Jak2+

Jody00
Jody00 in reply to Solyesh

Hi 41 years old ET jak2 positive

ET JAK2+

Myelofibrosis

ET 21 year old

PV with confusing 2 JAK2+ and 2 JAK2- diagnosed aged 14.

hi im 63, pv diagnosed 2 yrs ago

I was diagnosed 16 years ago with polycythanemia ruby Vera primary

ET, Jak2, Male, 36 when diagnosed

Mpl positive et male 75 yrs old

ET JAK2 positive

Hi I have mds/mpn-u with no genetic mutations found. Diagnosed 3 days ago. Taking aspirin only with regular blood monitoring. I'm 44.

Primary myelofibrosis

I have ME

My diagnosis is ME.

Mazcd
MazcdAdministrator in reply to Faith33

Hi Faith33, I thought your diagnosis was ET? Maz

I was 63 years old when first diagnosed.

PV

Thrombocytosis and also MDS - refractory anaemia with ring sideroblasts. Diagnosed two years ago and taking aspirin. triple negative.

Essential thrombocythemia

ET JAK2 - female diagnosed at 61, high platelets from 55 onwards.

ET Jak2+

Wife with ET Jak2

I have ET and jak2 positive I had mine since the age of 29 but was mis diagnosed until I was 40