Hi - I am 47, and have been diagnosed with ET. Unbeknownst to me, my platelet count has been rising for the last 4 years, and this last January was in the low 500's and then 10 days later, went into the low 600's. A bone marrow biopsy - results confirmed not AML or CML. I also tested positive for JAK2 V617F - though I'm not sure what that really means. I have been put on two baby aspirin a day.. and told to just watch and wait... there's nothing I can do besides take this baby aspirin to help prevent stroke or heart attack. It feels weird to be told you are at increased risk for those, and also told no more intense working out/exercise. I'm a mom of 3, (12, 14, & 16) and up until this, very active. I have numbness most days in my fingers, arms, jawline and lower legs - but I am told I'm at low risk b/c of my age. *Something my husband and I are second guessing, is 3 years ago, I had what my husband thought was a stroke, I had a weird pain in the top of my head, then slurred speech, and was nauseated. A trip to the ER and a CAT SCAN- said no stroke.. but we are wondering now it was a small one and if it is related.
It seems like there is so much conflicting info out there.. MPN's are a disorder or they are a hematologic malignancy / blood cancer? I have found the MPN research foundation website, and this one, to be very credible / helpful. Yet at the same time I have my Dr.'s saying ET is easy to manage.. not really a big deal?? I'm confused and don't know who to / what to believe.
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ET was formerly known as a blood disorder - but in 2008 (WHO), the World Health Organisation reclassified ET as a blood cancer/Myloproliferative Neoplasm. Additionally, it is a very rare blood cancer - so it’s quite alarming why your ‘Kaiser Dr’ would say it’s very common!
The good news is, although not curable it is treatable. There are people on this forum who have had ET for well over twenty years.
I agree, there is a lot of conflicting information out there. MPN Voice in the UK and Patient Power MPN in the USA are excellent sites. I would suggest that you educate yourself as much as possible from these reputable sources and likewise, be your own advocate.
You are right to question the episode that caused you to have slurred speech and a trip to the ER. It may well have been nothing - but equally it could have been a transient ischemic attack. I would discuss this with your haematologist.
Hello Mary! Thank you so much for the resources. I am so appreciative. I'm sure I'm not alone in that I want to prevent stroke / heart attack and I almost feel like the treatment plan is really --not aggressive. I almost feel like, when or if you have a stroke or heart attack, then they take you more seriously. Perhaps it's common to have good success for years with just aspirin? I'm curious when others have sought additional treatments.. and if the numbess is also common. I also have on a very frequent basis.. non productive flu like symptoms.. meaning daily I can feel achy and not well.. but I never get a fever and seem to be able to get through it with caffeine and advil.. which I'm told I shouldn't take. My doctor seems to have no idea on what types of exercise I can do.. just says low impact.. really hoping I can find a specialist in my area. Thanks Mary! Are you in the UK?
Hi. Welcome to the forum. I’d second everything Mary has said . Your local doctor may be confusing ET with - who knows what. There are prevalence figures for the various MPNs on the mpnresearchfoundation website and on the Mayo clinic website. They are rare.
I had a pulmonary embolism two years before my MPN diagnosis ( myelofibrosis) - no cause found then, but now seen as likely to have been due to clotting as the result of the MPN.
I hope you have a good haematolgist who knows about MPNs and that you can check things out with him/her as you need to.
I did ( and do) find it very helpful to share stuff on this forum. MPNs are a chronic form of cancer, and very variable. Finding out what other people are experiencing is useful to me , and helps me explain things to my family and friends. Especially the otherwise inexplicable fatigue. There is a lot of research activity going on right now, and new drugs are being trialled.
Thank you so much for taking the time to share your perspective.. it really does help. I am probably more sensitive as I keep being told.. it's not "really a cancer" .. it may be called that.. but what I have is a benign cancer ... not a malignant cancer.. (even though I have read on the MPN research foundation page, that ET is a "hemotologic malignacy"???). ..
These are all things I get, and also I get that in scheme of other cancers.. maybe this is not on the same seriousness of other cancers... I'm told my life span is normal - but I'm 47 with 3 young kids, and I had been exercising intensely and would still like too but am told I should now do only low impact - and that I need to reduce my risk of stroke or heart attack.. (My mom had a massive heart attack 5 years ago.. and both my brother and my dad have had heart attacks.. I know the damage done from these.. it makes me apprehensive for sure)
I am truly on the path of trying to find an MPN specialist.. who can talk to me about my numbers (1/24 blood draw was 603K, up nearly a 100K from 10 days prior)... but still below the 1million point. I'm wondering when others have looked into other treatments to slow the platelet increase.. and when others have felt it is more serious. I have another blood draw tomorrow and am meeting with my doctor friday... hopefully I will get more clarity.
** to anyone reading and responding.. I thank God for you.. b/c it does help to have others in the same / similar situation, to talk to. I hope to be there for you in some way too. God bless!
Thank you Rachelthepotter. Sorry for the delayed response as I have been busy at work. I sure appreciate the referral on helpful websites and will follow up!
Many young people with ET do very well on aspirin alone. However, if you are symptomatic, cytoreductive therapy may be considered. It is important that you have quality of life too.
I have ET (Jak2+) and am on aspirin and a low dose of hydrea. My platelets were only 500 at diagnosis- but because of age I am considered ‘high risk’ - even though I am otherwise healthy. The haematologist explained clearly about the risk of thrombotic events, so I was happy to commence treatment.
Have you been referred to a haematologist at all? If not, I would suggest that you see an MPN Specialist. There are many experts in the USA.
Thanks Mary.. helpful to know you have the same thing.. I have Jak2v617f +
Since testing postive for the Jak2, they have me seeing a hematologist at Kaiser. He also says what I have is not cancer - it's a blood disorder he says.. and he is pretty much on the same mindset as the two family friends I have noted above. I'm not trying to elevate what I have and make it a bigger deal... however, I want to make a big enough deal that I do all I can to prevent the stroke or heart attack. Do you also have numbness in your hands/arms/face? My lower legs also feel numb at times... maybe all just symptomatic of this.
We are looking for specialists in MPN.. will keep you posted when I find one!
My work Dr didn’t know that ‘Essential Thrombocythemia’ was a blood cancer!
You have certain rights in the workplace if you have cancer - so it was important to prove this. I had to bring a copy of my haematologists letter in to work which read, ‘this is deemed a cancer of the bone marrow.’ On presenting this letter to my work doctor he said, ‘I’ve been educated today.’ It would seem that many Medics for whatever reason are misinformed, it doesn’t exactly fill you with confidence.
In answer to your question, I personally don’t suffer from numbness - but others do. We’re all different in regards to symptoms. I did suffer visual disturbance occasionally, fatigue and burning pain in my left foot on prolonged standing. I didn’t consider these symptoms too much of a burden - so I didn’t bother going to my GP. I just put it down to age! My high platelets were actually picked up on a random blood test.
Really pleased that you’re looking for an MPN Specialist. I hope you find one close to where you live.
I am so sorry to hear of your diagnosis, it can be very confusing to get the facts straight to start with! I agree with all that’s been said above.
I was diagnosed aged 39, 9 years ago. My kids were only 6 and 8 and I was diagnosed after feeling very unwell for months: pins and needles in my arms, chronic aches, migraines and completely exhausted most of the time. My blood tests showed high platelets (600s). Eventually I was referred to a local haematologist who tested me for everything. He also ran a test for what he described as an extremely rare blood cancer called ET, but he didn’t believe this was a likely diagnosis due to my age. The tests showed I was JAK2 positive and he diagnosed ET!! I was put in aspirin and changed my job and lifestyle to improve my QOL. My platelets have been checked regularly and been around 600-700, so above normal but not as high as some people experience.
Over the past 10 years I’ve experienced periodic acute chest pain. Various GPs have dismissed it as eosiphogeal (sp?) spasm or GERD, based on my description retrospectively. It occurred at random times, day or night, at work or home. Then 2 years ago we were driving along the motorway and the pain come on. So we went to hospital to get it checked out, the first time I’d been checked whilst I had the pain. I had high platelets, extremely high WBC, and a DDIMER score through the roof. They treated me for suspected pulmonary embolism. However, a scan of my lungs the next day cast a question mark on this as no clot was visible. After that I had MRI scans to check my heart was ok, which it was. After all the tests and checks, my haematologist offered cytoreductive treatment as she could not completely rule out that a clot had occurred. Her other theory was that my platelets, due to their defective nature, could be irritating the lining of the blood vessels, causing chest pain... so I went on Pegasys and it’s been great. No pains and a normal set of blood counts ever since!
Sorry for the long winded email, but I guess what I’m trying to share is the need to get symptoms checked out... but by a specialist haematologist who really knows about your ET. (Every other doctor I have seen is woefully misinformed). I travel into London every couple of months to see the amazing team at Guys hospital. They are experts in the world of MPNs and since being in their care I’ve stopped worrying about my ET. Because I trust them 100%.
I wish you well, and do please use this forum whenever you have a query. The lovely folk on here are usually able to offer up great advice, thoughts and ideas!
Loubilou.. you are describing me! i have the same.. the same!! The heart / chest pains are so random and I am embarassed that I when I finally share with my doctor.. he dismisses them and I feel like a hypochondriac.. however.. to read your story.. I feel like I could have written it. THANK YOU.. I will mention the choices you have made to my current hematologist and will see what happens..Sure thankful for this site!
I was fascinated by your account of chest pain coming on out f the blue. I’ve had exactly the same thing hapoen to me when I was driving almost a year ago. Really severe chest oain. I was alone in the car, driving through Londn on. Friday afternoon having just been given my first supply of Rux and was feeling stressed and stuck in traffic. The pain came on and built up rapidly to a level I couodn’t ignore. I managed to get off the main road and made myself call an ambukance: major fear of seen as a hypochondriac.
Was taken to A and E, no heart attack found.
The pains happened ( but at a much lower level ) a couple of times after that, but now I’ve been on Rux for nearly a year they haven’t cme back. I’m so glad: I was put off driving on my own for a time.
Wow .. great info! Sorry I somehow missed your response and am just now responding. Really appreciate your input.. and will continue to look for a specialist here!
Hi. Yes information can be very hard to get, especially with drs who aren’t familiar. This is a great place to ask questions. My son was diagnosed when he was 11. After having a stroke. His MRI showed evidence of several TIA’s and a platelet count of 1600. The good news is he’s almost 18, and has had no permanent impact from the strokes. He takes aspirin and hydroxy everyday. The later makes him feel pretty sick. But otherwise he leads a very active life. Playing footy, basketball etc. so I would question the recommendation about limiting your exercise.
We are based in Australia, so are hoping to get access to Ruxolitnib soon, which would replace the need for hydroxy. Our Haematologist often says that many patients are only treated with aspirin, but given my sons history we have to take extra measures by taking hydroxy.
Good luck, concentrate on keeping a healthy lifestyle and I’m sure you be fine xx
I was also 47 when I first was diagnosed with ET , my platelets were 900plus. I am now 73 (today) and am still going strong. I started on interferon injections for about 8 years, then aspirin alone for another 4 years and since 2006 I have been on hydroxycarmide and am still on it. I have been told that their is no reason not to expect a normal lifespan. I have other health problems but don’t think it is linked to ET. I live in the UK and travel to USA to visit family and have never had a problem with travel insurance thank goodness. Good luck and I am sure you will come to terms with ET. X
Hi. Welcome. Various things you’ve said are ringing slight alarm bells!
As others have commented it’s slightly worrying that your Doc claims he sees ET in pregnant women ‘all the time’. That would indeed be bizarre for a rare chronic disease and especially one that tends to be diagnosed in older patients.
Secondly, not sure what this ‘low impact’ exercise advice is all about. Maybe some confused thinking about the risk of bleeding. Certainly I’ve read advice about avoiding contact sports due to a risk of bruising and wounding. But there are plenty of people here who exercise rigorously. Indeed exercise is encouraged. And if you are already fit, you don’t want to lose that.
And third, two baby aspirin daily seems a lot. The advice I got from Guys was less is more.
May be worth checking out the MPN Voice website in the UK. And (diplomatically!) checking with your Doc that he is on the same page. Good luck!
Agree with all advice above. In pregnancy you can see a rise in platelet levels but then settles down after delivery so is more a pregnancy physiological response and I wouldn't jump to advised that it is a true ET in this scenario. Hope everything goes well for you
Oh dear sorry to hear of your diagnosis. In the Uk all MPNs are classed as rare blood cancers. Formally know as MPDs.
The Mayo clinic Arizona is right in the foreground on knowledge. One of their professors participates in seminars. Telling your doctor that you think you ve had a stroke, no matter how small is vital. It might even impact on your medication.
My advice would be, read all the replies you’ve received. Google the information on the Mayo website.
Write down all your questions, worries and doubts then visit your doctor or another of your choice.
Being diagnosed is a shock to the system and you have a family to look after too.
Thank you Wyebird.. all great information... and helpful. I have been so encouraged this morning by the help from all you and hope to be of help to others down the road. Bless you!
Hello and welcome. You stated you are in GA right? I am too and I also have Kaiser and my doctor states ET is very rare. I'm on an aspirin at night and 1500mg of hydroxyurea, 2 pills in the morning and one with aspirin at night. ET is a rare blood cancer. You may need to find another doctor who understands ET.
Hi Cbreeze - I'm in California actually, but I love Georgia! thanks for replying. Would love to connect and compare notes. Do you have an MPN specialist who is seeing you? My Hematologist told me he is a benign blood cancer specialist... not necessarily a MPN specialist though he says he has a few patients with ET.... yet he won't call it rare or cancer. He says it's benign.. and I don't even know what that means.
What are your numbers? My platelets were 449 in 2015, then 475 in 2017, and 541 in January and now over 600 in Feb. I have the JakeV617F + result. I have another blood draw tomorrow. My whole reason for going in was feeling consistently like I had "non productive flu like symptoms" meaning I felt achy, had regular headaches.. and yet it didn't lead to anything also didn't go away. It was / is daily. I also have numbness in my hands, arms, and jaw/cheeks at times. My lower legs ache pretty regularly too. I also have had chest pains at times.. particularly when my arm and jaws were feeling really numb, but again that hasn't lead to anything so I have dismissed it.
Since starting aspirin, they have me on two a day - the headaches have really seemed to go away except occasionally.. but the aches are still there. Prior to Feb of this year and being told to limit my exercise to low impact, I was doing moderate to high intensity workouts, 3-4 days a week. Now I am trying lower impact and have gone about 1-2 times a week. Hoping to increase it.
There seems to be a lot of optimism around this and I'm grateful. This army of supporters is certainly helpful!
Hello, my doctor is an oncologist who deals with MPN patients along with other cancer patients. My platelets reached 999 and I was put on Hydroxyurea. I go on Friday to see how I'm doing. I was diagnosed September of 2014 and I'm JAK neg. She was able to get my platelets to the lower 400's and we tried reducing my dose to 1000 but the platelets went to over 700 so we went back to 1500mg. I have bone pain, itchy skin when taking a shower, headaches, night sweats, feeling of flu symptoms and now I'm forgetful, I call it chemo brain. Tired a lot, love my bed.
I'm not a medic but have read that Thrombocythemia is reasonably common but it is generated by something eg illness, fever, etc. (possibly pregnancy) but it isn't known what is causing ET. The word 'Essential' in this instance means 'Cause unknown' not the more usual meaning. See here: healthunlocked.com/mpnvoice...
My doctor told me that it was quite common too - until I quoted the facts from MPN Voice (mpnvoice.org.uk/) and WHO. It is quite likely that your medical contacts have confused the two types as well.
Have you investigated this site: mpnresearchfoundation.org/F... which may be able to help you find a specialist in your area.
Thanks ChrisAnnSen - do you think an OBGYN, might possibly be seeing high platelets in pregnant women, but then those numbers go down after pregnancy? that would seem more common.. I referred my doctor to the MNPvoice.. and hope they will look at it. The other site I have found really helpful is mpnresearchfoundation.org/U...
Thank you again for taking the time to share your insight
Thrombocemia and essential thromocemia are two different conditions. Before I was diagnosed with ET I was told by my haemo I had an infection in my body somewhere. Hence thorough examination of glands lungs spleen colon and osophagus. Apparently your platelets will rise when you have an infection. ( secondary essential thrombocemia. Then my bloods came back confirming the mutated gene Calr. So whilst the first is common the second is not. Your body cannot control the amount of platelets it requires due to the mutation.
I’m no medic the above is how I understand it.
Go to the Mayo clinic or MPN voice.org.Uk. It might help.
I am 54 and was diagnosed in May 2017 with ET CALR+ and counts back then of 1250. I was already on aspirin for another condition which masked some of the symptoms. Back then I had fainted at work with pins and needles in my mouth and unable to speak. This had happened a few times over the years so I went to see my doctor and the found this condition. At first they told me to stop taking aspirin and that caused me to have pains in my finger tips, pins and needles in my arms and headaches. When I was put back on aspirin they immediately disappeared. I am on 0.75mg per day. In September I started taking Pegasys Interferon Alpha in September and my counts are ow 258. I think you need to get good medical advice and get as much information as to your options. Good luck, Jocko.
I've replied to others on this site in the past. I am also in GA - USA. I was diagnosed with ET in 2004 after several annual blood tests showed a steadily increasing platelet count (hitting about 800 in 2004). I was in Vietnam in 1968-69 and exposed to Agent Orange. However, the VA denied my ET claim in 2016. I plan on another VA claim this year (the MPN Research Foundation suggested that I reapply for my claim).
I took 500mg/day of Hydroxuria until 2012 and platelets went down to 300-350 range. My hemoglobin count is what my PCP, VA doctors and oncologist worry about. It's been 11.0 or lower for several years and should be 14.0. I take a baby aspirin, two 500mg non-flushing niacin (vitamin B3) capsules, two 65mg iron pills and 3000 - 5000mg of sub-lingual vitamin B12 each day. In December 2017, my platelet count was 500. Going back this Friday for another blood test with my oncologist (he also blames Agent Orange for my ET).
I walk 1 1/2 to 2 miles most week days on a treadmill and lift weights M-W-F. My oncologist tells me not to slow down even though I'm 71. I have an occasional off day, but most days I feel good. I work in the yard and do a lot of regular auto maintenance (four cars).
So, question your oncologist on whether or not you should keep up exercising. You're young and if you get out of the habit it will be hard to restart.
The best of luck to you, and to your good health......Bipper
Thank you so much for taking the time to tell your story and share the journey.. so very helpful! I am encouraged by your excercise routine and will ask when I see my doctor on Friday. Did you / do you have any of the numbness or aches in your legs? I get it in my fingers and arms and face too... but the achy legs are probably the most consistent. I hope to get more clarity and also to find a specialist.
My dad also went to Vietnam and is battling the VA for something different-and it has been an uphill battle.. I’m sorry to hear you are having similar struggles. Don’t give up! I will pray for you too.
Thanks for replying. I don't have many aches and pains now. While taking Hydroxuria, I developed a peanut allergy that lasted for about a year after stopping the drug. I also realized that my thought process was very foggy while taking Hydroxuria. That also improved during the first year after stopping.
I had pain in the ball of my right foot while taking Hydroxuria. That too has gone away.
Right now I'm in pretty good shape. I hope you will also make your way through this disease and get stronger each day.
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So appreciate you taking the time to chime in and share your story! God bless!
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