What age were you when your MPN was diagnosed? - MPN Voice
What age were you when your MPN was diagnosed?
Please select all that apply:
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
Hi Maz, PV & ET
I have ET diagnosed at 17
How are you getting on
My son has ET (CALR+) diagnosed age 20 (only diagnosed 3 weeks ago)
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.
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!
@christiev, a few years ago you seem to have been in a similar situation as I am now. My son (19) is in the process of being accurately diagnosed. Preliminary diagnosis ET and Jak2+. He had a BMB only a few days ago and we are awaiting results. Naturally I'm terrified that this diagnosis will be changed to something more sinister since they also found BCR-ABL of .0038 (barely perceptible, but there). How did you cope with the constant barrage of lab results that can create fear on their own? It's been hard to convey the seriousness of what he's going through and still keep a positive tone for my son. How did you do it? How is he now? I'm hoping well and thriving.
TIA
hello!
I just replied to you but my reply suddenly disappeared! Apologies if this is a repeat!
Yes! My son is well and thriving! And I have survived it all too - the huge derailing fear that felt so overwhelming has dispersed and while his MF is never far from the front of my mind, it no longer dominates my headspace nearly to the same extent. The best thing that happened for me (and I think for my son too) was to become attached to really superb specialist team. Meanwhile, I continue to follow all the latest research and treatment developments - and there’s heaps of progress.
My son is doing post grad studies on the philosophy of cancer - one of the ways he has managed his diagnosis! He now seems to know more about the biology and chemistry of all sorts of cancers than I ever thought possible or indeed wise! But this has been his way of coping and he’s a happy young man! He experiences tiredness, headaches and the odd ‘hangover’ feeling unrelated to alcohol. But this has become a manageable part of his life. He is regularly checked and scanned and while things are progressing, it’s slow. I have accepted that it’s perfectly reasonable to have some positivity and no longer battle so hard and regularly with waves of crippling fear. I feel for you hugely. It’s an exhausting roller coaster. More than happy to chat any time.
Where are you based?
Thank you SO MUCH for your note! It means the world to me to hear tales from the other side.
I'm in Seattle and my son is in college in New York City. He has an amazing team and they seem to be perfectly suited to his age and situation (both medically and emotionally) I am enormously grateful for that. Right now we're in a waiting period for more information from his BMB. I'm anxious to have answers and at the same time dreading what they might be. The last thing the doc said was "you're going to be fine" but then in his after visit notes said he'll be testing for ALL and CML as well...which is much more concerning than anything he mentioned during the visit. It's those tidbits that make sleep difficult.
I'm so glad your son is doing well. My son is currently pursuing a philosophy degree. I wonder if he'll come across philosophy of cancer in his studies. Very interesting. I love that your son has embraced knowledge as a management tool. 19/20 is such a young age to be facing a chronic condition like this. However, as you mentioned, I do think research surrounding MPNs (especially those with genetic mutations) seems to be moving quickly.
Can I ask you how your son reacted to the news when he was diagnosed? Part of the sleeplessness and obsessive thinking is not just related to the "what ifs" that come with an MPN, but also how is he REALLY?
The roller coaster is real, and I believe that it's never far from front of mind, but I'm hopeful that I won't constantly be looking for signs of life every 5 minutes. I might write down your words, "it's perfectly reasonable to have some positivity and no longer batter so hard and regularly with waves of crippling fear" and put them up on sticky notes all over my house.
Again, I'm beyond thankful to you for taking the time to respond.
-Liz
Hi RickyD,
I saw that you were diagnosed with ET at 18, and you've been living with it for 30 years. I wanted to let you know that this inspires me - that you are living decades, and I trust you have a full life. Any advice?
Thanks for the inspiration!
Hi maz , I have p.v. Jak pos , 2012 ,I was diagnosed , violet x
ET with JAK2+
ET with JAK2+
ET with JAK2+
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
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.
Greetings. I saw you were recently diagnosed at the age of 37. I was also recently diagnosed at the age of 33. I hope your treatment is going well and you are feeling positive about many more decades.
Hi there, I am doing really well. I have been living with this for 11 years now, taking 1g Hydrea and asprin daily, with no ill effects and regular check ups with my haematologist every 4 months. I feel lucky that it does not bother me at all, physically or mentally. My advice is to try not to worry and live a healthy life as best you can. Best wishes to you 🙂
Thanks for the thoughtful and encouraging reply!
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 .
Greetings!
I saw that you were diagnosed with ET at 43, and you've been living with it for about 30 years. I wanted to let you know that this inspires me - that you are living with this for decades, and I trust you have a full life. Any advice? How is the HU treatment? I've recently switched from HU to interferon/Besremi, and wonder whether you've considered this change.
Thanks for the inspiration!
I am very lucky to be under the care of a good team and ‘I just keep taking the tablets’ x
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.
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.
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
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 -
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+
All the best Maggie
Male aged 50 PV .JAKpos
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.
Hi! That is the diagnosis I was given at the Mayo but also given PCV here in Denver. Do uoucc cx take any medication?
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
E.t
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.
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.
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.
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.
I have ET Jak2 positive
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
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.
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
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
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
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
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+
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
Polycythemia
ET, JAK2 negative
PRIMARY PCV-on asprin and blood letting
PMF
PMF
I have 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.
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?
Hi. Thk you for sharing.I wish you are well. My husband got diagnossd with ET since 12 & now my baby/toddler is being diagnosed (not yet completed). We hope to support our son in this battle/ journey.
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
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
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 - Diagnosed at 44
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
My son (19) is going through the diagnostic process right now. Such a challenge completing Freshman year 2000+ miles from home and managing the fear of unknown MPN at the same time. He is Jak2+ with a preliminary diagnosis of ET...extreme ET, but we keep our fingers crossed that this will be the final diagnosis.
Can I trouble you to share how you managed the stress of being a young adult and all that comes with that and the stress and fear of a chronic diagnosis? How long have you been dealing with it?
TIA
Polycythaemia
ET diagnosed at 52
Prv
Jak2 negative PRV
I have MF
Myelofibrosis
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
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.
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
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
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 65 years of age at diagnosis.
I was diagnosed in 7/17 with ET. I had a bone marrow biopsy and started Hydroxyurea that day. I am JAK 2+, CALR - .
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
ET With Exon 10 (Only 24 of us in the UK - Never found anyone with this - Exon 10 is next door to JAK2)
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
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
PV
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
ET
ET
ET
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
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.
I have ST Jak 2 pos
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.
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
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
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
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.
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+
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.
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)
Hi Nmom, how is he coping with it all, is he ok, and how about you? Maz
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.
Polycythemia Vera
Polycythemia Vera
PV
ET.
Et
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 at 60 🌈❤️
Polycythemia vera
I have ET, diagnosed at age 58.
PV
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.
Polycythemia Rubra Vera Jak2
ET. Diagnosed at 43.
Essential Thrombocythaemia
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.
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+
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.
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
PV Jak2 +. Diagnosed at 53, 18 years ago. On aspirin.
ET, Calr Type 1
Triple negative ET
CALR+ Have been on Hydroxyurea 1000mg a day for 2 yrs
I have PV JAK2+
I have Essential Thrombocytosis, diagnosed 9/2019 at age 68.
Post PV Myelofibrosis
CALR+ age 65, almost 3 yrs on hydrea and baby aspirin. Doing great now at 69!
ET and PV
ET
PV
ET
ET - although waiting on the final diagnosis after a BMB.
Diagnosed with ET at 61 but probably had it some years before as previously was healthy and hadn’t had a blood test for 7 years!
ET JAK2+
ET at 53
ET and RARS.
ET JAK2+, age 49, diagnosed April this year. I’ve likely had this for quite awhile and never diagnosed. New symptoms started last November with persistent joint pains, blood test showed high platelets just over 500 on 3 occasions. Referred and had the JAK2+ diagnosis. Lately experiencing a wonderful medley of interesting bodily sensations and pains and wondering ET related or not.
All that said, my approach has always been to listen to what my body tells me but don’t treat it too gently, which seems to work for ET.
Take aspirin daily, turmeric, Mediterranean diet.
ET - no markers. Will be having genetic testing when the world is less mad.Diagnosed at 17.
Polycythemia Vera
I was diagnosed with PV this year (2021) at 36.
polycythaemia vera
MF3 when i diagnosed, actually i had splenomegaly several years(5-6 years) already.
I have ET since the age of 51 nine years ago
PV Jak2 positive
ET JAK2
62, ET, Female
Pv, diagnosed aged 50.
I have PV and Jak2 positive
Polycythemia vera
ET at age 72, Male.Thanks for all you do, Maz!
ET
ET
PV jak2 + . Many symptoms for several years before I was diagnosed. Took a couple of years or more after diagnosis for HU to have an effect and have a reasonable quality of life. A year ago symptoms became worse again but blood results satisfactory. Learning to live with it.
ET, Jak2 positive
I was 39 but I had no symptoms for many years except for an enlarged spleen. I have myelofibrosis.
ET male 38 years old - so far no symptoms. CALR type 1
Post PV Myelofibrosis
I have ET (MPL mutation), diagnosed 2018 at age 40. Female.
ET-Jak2
I have Myelofibrosis, JAK2 positive. Diagnosed in April 2011 but high white blood cell count missed by GP two years earlier. Currently taking Ruxolitinib 20mg/day
Essential thrombocythemia Jak2 +
I have ET, aspirin only required
ET
JAK2+ ET (daughter- age 15 at diagnosis)
I have ET CAL R. Was 21 when diagnosed, now 58. Was on Interferon in late 30’s now on hydroxycarbamide & Clopidogrel. Been on hydroxy for over 18 years (can’t remember exact dates)
Jak 2+ ET Diagnosis 2013
Essential Thrombocythaemia jak2
Hi i was diagnosed at 43 with ET/MF which has now progressed to MF
Polycythaemia Vera
ET
I have Polycythaemia Vera, diagnosed in August 2016, aged 55. Felt 'not right' for a few months prior with various symptoms. Assumed it was down to age and maybe menopause. Found out when I was taken into hospital after having a funny turn at work
Diagnosed with ET 11 years ago, but told I have PV now 2 weeks ago.
ET and Jak2
ET diagnosed 2016 at age 55
Polycythemia Vera
Hi i was diagnosed with MF at 43 in 2007
PV diagnosed in Feb 2022
PV at age 36
I have Essential thrombocythemia
PV
Essential thrombocythemia calr +
I have ET JAK2+ and was diagnosed Nov 2018 aged 44 however it turned out the my platelets had been abnormal since 2009 but the MPN hadn't been picked up.
Hi Mazcd, Diagnosed PV at 60 years old, male.
Hi Maz,At 82 I was diagnosed with ET but following my Bnb my diagnosis was ET with fibrosis and then myelofibrosis.
59
ET
Diagnosed in 2021 at 63 with Polycythemia Vera and JAK 2 positive. Started HU- May 2021.
ET, CALR+ diagnosed when I was 55. Though the CALR+ was finally discovered a few years ago.
I have ET.
I have ET.
ET diagnosed 3 months ago at the same time as my husband
Hi Maz, JAK2+, diagnosed as ET in 2020. Now, it seems my initial ET is progressing to PV.
ET , diagnosed in 1996. Have been on increasing doses of Hydroxycarbamide and also take aspirin.
Aged 70 diagnosed ET CALR + Recent BMB shows MF stage 2 on Jakavi.
ET jak2 positive
ET. MPL mutation
PV JAK2+
PV
ET, Calr exon 9 mutation
I have PV jak2+ diagnosed 2017 at the age of 75
I was 78 when diagnosed in early 2022 with CALR positive ET
Primary Myelofibrosis intermediate 1 😎 Diagnosed 40yo, jak 2 positive 39yo, portal vein thrombosis 39yo
Polycythemia Vera- Jak2+ All three cell lines increased significantly, although RBC's started ^ first. Dx: 5/2022.
et
Essential Thrombocytosis- Jak2 positive
I have PV. JAK2+. I was diagnosed with it when I was 53.
Essential Thrombocythaemia
ET CALR. Diagnosed at 45
ET JAK2
PV diagnosed at 48
I have PV with JAK2. Diagnosed 2021 age 50.
thrombocythemia age 64
Initially diagnosed with ET and now PV. I was 39 when diagnosed. 43 now.
I have triple negative ET
PMF
CALR+ ET
ET JAK2 +
ET
ET diagnosis 65 years old . Started Hydroxyurea age 69. Now I am 73.
I have ET & PV which was diagnosed January 2022
Essential Thrombocythemia
PV -
Jak 2
PV
ET Jak2
primary mylefibrosis diagnosis I had just turned 24 when I was diagnosed after a blood clot liver failure and portal vein thrombosis took me to hospital iam now 38 this Thursday
I have ET-JAK2, diagnosed March 2022
ET JAK2 +
ET
I still do not know. Bmb in two days. Probably ET or pre-fibrotic myelofibrosis. Amidst through the roof right now.
Et jak2
polycythemia
Polycythemia Vera
Essential thrombocythemia
ET
ET JAK2
ET Jak2
I have Polycythemia vera now about 15 years now and taking hu.
CALR+ ET
unclear differential between ET and pre-fibrotic myelofibrosis. Jak2+
ET jak neg Carl positive
Essential Thrombocythaemia JAK2
E T
Essential Thrombocythemia Jak 2 at 62, following a TIA
I have PV.
ET. Since 50. Been working on kerosene heating boilers for the last 26 years and I think that the exposure to the kerosene fumes could have been a contributing factor. Would be useful to know if anyone else has been exposed to petrol type fumes.
Chronic myeloproliferative disease- between ET Jak2 & prefibrotic Myelofibrosis- on HU since June 2023 - platelets 900-616
ET
I was diagnosed 6 weeks ago at 52 with Et jak2 .on Hu for 3 weeks.Symptoms diagnosed as arthritis at 34
I had high platelet counts when I turned 66yo, but physician brushed it off. When I had my shoulder replaced at 68, platelets were 550. No one concerned but me. My GP retired and I voiced my concerns to new GP. Referral immediately to hematologist /oncologist who confirmed ET JAK 2+ right away. HU started immediately.
ET triple negative, age 37
Polycythaemia vera (2015)
Aspirin/venesections.(Peg INF ceased after paraesthesia +)
Starting Ruxolitinib
ET JAK 2+
polycythemia
ET CALR+ 65yrs old
ET calr
ET (MPL mutation), diagnosed at 41
ET Jaks 2, diagnosed 2 years ago aged 65
ET Jak2+
ET Jak2+
Et Jak2
Essential Thrombocythemia Jak2
PV
Hi Maz, I have prefibrotic MF which presents as ET
Essential Thrombocythemia
ET --> PV
Essential Thrombocythemia
PV
I was 73, and I have ET. Probably had this since 2009 according to my BMB.
I have PV, diagnosed 4 months ago. Previous to this for a few years my platlets were raised, then I had a DVT ,PE and cerebral thrombosis. I only got my diagnosis 8 years later after I complained of aching bones and fatigue and blood tests showed JAK2 positive.
polycythemia vera (diagnosed 4 months ago)
Diagnosed at 43 last April. Likely had it awhile if I follow the symptoms of chronic migraines, deteriorated vision, bruising easy, itchy skin, etc.
60 years old when I was diagnosed, I have PV - male. Thank you
Diagnosed with PV last month. Negative JAK2. Bloods have been abnormal for a couple of years. Already on blood thinners for atrial fibrillation. Also got another rare disease Microscopic Polyangiitis - thankfully seems to be in remission at the moment.
66 diagnosed with MPNU ….. unspecified but likely myelofibrosis
Became myelofibrosis quite soon after at the age of 67
Primary Myelofibrosis
ET Jak2+
hi I was 26 when diagnosed with ET Jak2 pos
Hi, diagnosed August 2023 with Molecular Negative PV.
PV diagnosed 2024 48yrs old
ET now PV
myelofibrosis
ET JAK2+ @ 73yrs
MPN-U
I have ET JAK2 +
ET. DX 2022. 76 years old. Taking Hydrea
PV - Dx at 72
PV with high platelet count. D: Jan 2022 A: 49
P V +ET jak2 positive
PV and ET jak2 positive
I have ET CALR diagnosed June 2023 at 26 years old and treated with aspirin and weekly interferon. I unfortunately suffer with terrible symptoms daily and have not had a BMB yet. I’m terrified of a bmb but is it worth requesting one?
hello Farmgirl 96, I am so sorry that you are suffering terrible symptoms, it might be worth speaking with your haematologist and clinical nurse specialist about these symptoms, as they may be able to help you. With regards a BMB, this is again, something to discuss with your haematologist, as it is not always necessary to have a BMB to diagnose MPNs, as they can be detected by the blood tests. BMBs are carried out if the blood tests are inconclusive, especially if none of the mutations are present, which are JAKII; CALR; MPL and they are also done if there are changes in blood counts, so that the haematologist can see what changes are occurring in the bone marrow and also to get a baseline for the future to track any changes in the bone marrow.
I don't know if you know about the Young Patient Network we have for people with MPNs, aged 40 and under, it is a very active and supportive group who have their own private Facebook group, they have members across the world and offer support and advice to each other facebook.com/groups/mpnvoic...
Our series of blogs for young people with MPNs might also be of interest to you, mpnvoice.org.uk/about-us/yo...
Best wishes, Maz
Hi - I was diagnosed 28 April 2024 with ET Jak2 positive at age 65
Prefibrotic meylofibrosis
PV diagnosed at 53 (Jak2 v617). Possibly originally ET (2 years of isolated raised platelets, then 5 of raised HCT (+ sometimes RBC)). Hb high normal throughout, ferritin frequently below normal range.
Myelofibrosis
Female, finally diagnosed the day before yesterday aged 63 with PV. Negative for both types of JAK-2 mutation, but ticked all the symptom boxes, plus high haematocrit and haemoglobin (even after venesections) and once they had done the bone marrow testing there was no doubt about it.
Polycythaemia Vera
et jak2
ET JAK2+
ET 16yrs ago sorry Mazcd I hope my reply is correct, been away from the site for a few years and lost with how much change is happening.
Hi lavender007, yes it is thank you. Hope you are keeping well. Maz
Et jak2
At 71 I was diagn with PV Now on Rux 2 x 20.
ET JAK2+
Myelofibrosis
Myelofibrosis
ET ( triple negative)
ET Jak2
ET.CALR.
polycythemia vera at 47