Hadn’t seen a doctor in years, wife and I had baby coming and I thought it was time to take care of myself.
Found a great primary care who ran CBC as routine due to my lack of history. All normal, except Platelet count was 550. Doc suggested I come back in 3-4 months to monitor.
Second CBC came back at about 680. Doc advised a few more months wait and another followup. He also ran tests for other possible causes that were negative.
Third CBC came back with platelets at 710.
Referred to Hematologist who said could be normal range, but more likely something like ET. I had CBC done same day, platelets still at 690. She had said if it was ET, it is serious, but likely not life ending and I would need to be monitored more closely
Just got results today that I am Jak2+.
I have a followup with the Hematologist in about 10 days to discuss the results, but am guessing I will be diagnosed with ET.
I plan to keep the followup, but I have also already researched the best doctor in the state specializing in MPNs and asked my primary for a referral. I’m sure the local hematologist is capable, but for other things in the pats I’ve found going to the city and seeing the best is usually the safer bet.
All that being said, what should I expect next? As a new father, I am concerned that I may be at risk of losing time with my son and wife due to this health issue.
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Jaffar21342
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Hello and welcome to the club no one wants to join but we are all glad to be a member of. You are in the right place.
None of us here are doctors; however you are likely correct that with a JAK2 positive finding and thrombocytosis evident that the likely diagnosis is ET. That assumes there is no erythrocytosis or leukocytosis evident. You are also correct in seeking the care of a MPN Specialist. Most hematologists do not have the KSAs to provide optimal care for MPNs. Just in case you still need to review options, here are two lists.
I have two hematologists. A MPN Specialist at Johns Hopkins about 2 hours away and a great local hematologist (not a MPN expert) who handles my ongoing care.
You will likely have seen the scary news that ET and the other MPNs are considered to be blood cancers. The way many of us look at this is that this is cancer with a little "c" not a big "C". You are far more likely to die with ET than from it. Most people with ET will live normal lifespans if they receive proper care. You will have plenty of time to learn to manage this condition. There are often symptoms to be managed. We often have more problems with the secondary symptoms than we do with thrombosis or hemorrhage. This is because the deregulation of the JAK-STAT pathway does more than make your body make too many platelets. Our bodies also make too many inflammatory cytokines. At the core, MPNs are inflammatory disorders. Again, plenty of time to learn all about this.
I was diagnosed with ET when I was in my 30s and had two young children. It progressed to PV about 8 years ago. At age 66 I have lived a rich life and continue to do so. There have been some challenges (unique health learning opportunities), particularly in the last several years. I have managed those challenges and am doing well. Please plan to do the same. BTW - being a grandparent is great! Plan to do that too.
Given your age and an apparent lack of significant symptoms (e.g. thrombosis) you will likely fall into the low-risk group. Standard treatment protocol is low-dose aspirin and monitor. This can continue for many years in the absence of developing risk factors that would require more aggressive treatment. I worked for 31 years with ET/PV in a high stress job and did fine. This is not to say that people do not experience issues, Fatigue is the most common of MPN constitutional symptoms; however we do not all experience those symptoms. Please plan to move forward with your career and raising a family. If you take care of your health you will have lots of time with your wife and son.
The hematologist may want to do a bone marrow biopsy before confirming the diagnosis. Or you may get an answer just on the blood work like I did. Hopefully you will have an answer and a plan soon.
Do please let us know what you find out when you have your hematology appointment.
I think your responses are right on and intelligently stated . You appear to have more knowledge that many doctors I have met. Thank you . We are lucky to have you as a mentor.
Thank you very much for the reassuring and detailed response.
I’ve done a ton of research since learning of my likely diagnosis, and now have a better understanding as well as correlation of some symptoms I’ve had long term and just never realized the cause.
I’ve suffered from some unusual fatigue off and on for years, minor joint pain, aura migraines and occasional dizziness.
I just chalked it up to getting older, too much caffeine screen time etc. After reading a lot it seems these symptoms are all pretty common for folks with ET.
The aura migraines are off and on, usually without a headache and last about 15-20 mins. I had an optometry apt and was told eyes are fine, and pre platelet finding just assumed was from too much coffee and caffeine. My father gets them occasionally as well.
Joint pain, typically my knees pretty common and I just assumed it was from sitting for work, weekend renovation projects etc, but now I wonder if ET.
Fatigue is the biggest one for me. On some days I just feel off, and sort of lethargic. I even had thyroid tested at one point. Weirdly, it seems days I don’t have much to do are worse. If I get up and get active right away and keep moving, it’s not as bad. If I get a slow start and sit around a little the fatigue gets worse.
I had mentioned the auras to hematologist at the initial consult, but when we meet for the followup to discuss the Jak2+ results I will mention these all again.
You just described a cluster of symptoms that sounds like typical MPN issues. It is a bit complex at times as sometimes we have cooccurring conditions that also cause symptoms that are similar to what we experience with MPNs.
Not surprising that the ophthalmologist found nothing wrong with your eyes. The type of migraine that occurs in both eyes is a neurological microvascular issue. Glad to hear hat your migraines are silent (Aka acephalgic) . I also get this type of migraine, but mine are the aftermath of a brain surgery. I have had great success with Ubrelvy, a CGPR inhibitor, to treat the migraines. here is an article about the two types of migraine with visual aura.
The joint pain is a bit trickier since it can have different causes. The key thing to understand is the wide ranging impact of systemic inflammation. Here is a bit of information on that.
The good news is that there are effective interventions for the inflammation we experience with MPNs. Dr. Fleischman recommend N-Acetylcysteine. I have had great success with Curcumin, the active ingredient in Turmeric supplements. Finding a high-quality bioavailable forumation has made a huge difference for me.
Thank you for all of your responses. They have been most helpful. What is the brand name of the Tumeric supplement you are using. I am getting ready to purchase one and wouldn’t love a recommendation on a good one.
I use a formulation recommended by my Integrative Medicine Specialist called CurcuWIN. It is a proprietary ingredient found in a number of different brands. I use the Spring Valley brand Turmeric-Curcumin blend that I purchase at WalMart.
There are other formulations that work. Many use piperine (black pepper extract) to make the curcumin bioavailable.
Osteoarthritis does not necessary cause all of the inflammatory markers to come back outside of reference range. I had a cytokine panel done and only IL-10 was high, but every other cytokine was at the top of the reference range. The inflammation is still present.
Glad to hear your found a bioavailable curcumin formulation. Some people waste money on Turmeric caps that do no good at all. The curcumin has done me more good than any NSAID I ever tried. it is the difference between being functional or not with the arthritis in my hands.
I am happy to tell you that you can look forward to being put on low-dose aspirin and your aura migraines will disappear! At least mine, and many others' in here did. It is a relief. I've had 1 (!) in the two years since I started on aspirin (ET, JAK) Something to look forward to in an otherwise scary time. Best of luck. I'm sure you'll do fine
hello Jaffar21342 and welcome to our forum. We all understand your concerns about the future, being diagnosed with ET can be very daunting, but as Hunter has said most people with ET live a normal life span if they are monitored, and you will see from the many people on this forum that many of us have had ET for a very long time and are doing quite well. I myself was diagnosed in 2003 and don't have too many issues with side effects now, just the occasional bouts of fatigue, but not very often.
Take your time to read as much as you can about ET and keep asking questions, we are all here to help and support you.
Welcome. See my profile and read my posts, particularly the first ones fromLast year. Nearly identical situation, albeit with lower platelets. All the same feelings. 30M, platelets 430-470, not discovered until I had my first CBC in 10 years done last Jan (2021). Had a CBC 10 years ago at age 20 with platelets 455, 462 that GP never followed up on. I have a wife and 2 small children (at the time I found out, my wife was pregnant). Since then, I’ve been observed, gone through all the tests, and still don’t have answers. All my mutations tests were negative, so I’m a possible “triple-negative” ET. Or I’m healthy with high platelets. Who knows?
If you do truly have ET, which is likely given your JAK2 result (unless your red cells are also high, which could suggest PV), know that there is a lot of research being done on that mutation with new drugs (some even available) that can slow, stop, or potentially even reverse the progression of the disease. MPNs have only been labeled as “cancer” since 2008. Since then, the field has exploded with research, and treatments are improving all the time.
This is a great place. It is truly the best resource for reliable information, along with support, friendship, etc. Please stay and be a part of our group. Keep us updated, and feel free to ask questions, vent, or whatever else you need. We are here for you.
Hi, I don't have huge words of wisdom for what to expect longterm - I was only diagnosed last summer (ET Calr). But as a mum to two very young children, I just wanted to reach out and say I really do get how you're feeling. It's such a horrible, uncertain, stressful time and just so much to try and wrap your head around.At the time, I thought I would never be able to think about anything else, but trust me, slowly you do. I still have moments of deep fear and worry, especially when I'm having a bad bout physically (fatigue and aching etc). But on the whole, I do just carry on as I did before the diagnosis (ie getting exasperated at my kids!). My doctor said 'don't live the disease' and it's hard to listen but it's really good advice.
Also little things like revamping your diet or upping exercise a bit help a bit in feeling like you're getting back a bit of control. No idea if it actually makes any difference, my platelets are stubbornly at 700, but it does give you back a bit of power.
Can’t really add much to the what others have posted except to say that I was diagnosed as jak2 et about 18 months ago after a clot in my mid 50’s.
Given that event I am on hydroxy as well as aspirin - thankfully with no side effects.
I suspect you will be prescribed aspirin and monitoring as Hunter says.
I’d research the signs of a dvt etc and be aware of those and sensible precautions when , eg flying long haul.
If anything I view my diagnosis in a positive light. I am much more aware of and proactive about my health than I would or should have been without the diagnosis.
Apart from my medication and some much needed anyway lifestyle changes I live a perfectly normal life.
One further thought - if you or your employer has critical illness insurance you may be entitled to make a claim.
I believe the classification of et as a cancer - rather than as a “blood disorder” - allows
I do have insurance through my employer, it’s through BCBS.
How would I find out if I have critical I’ll was insurance? Is that something I would have needed to elect myself or is it often part of a health insurance plan?
I’m in the uk where most plans are taken by individuals.
I would , of course , enquire through your employers.
A couple of points.
Make a claim as soon as you are diagnosed - I believe some policies require you to claim within a certain time limit from diagnosis.
You may get some pushback as to whether et is a cancer and therefore if your claim is
Valid. You should push that very hard. There are some good resources in this on this site and else where confirming that it is accepted / classed as a cancer.
Do not worry you will enjoy father hood and watch you baby grow. Et patients lead an almost normal life and life span. Don’t spend 3 years trying to lead your normal life like I did then suffering huge fatigue accept your condition. I’m sure many here will offer you advise.
I however am going to give you financial tips. Use your money for living, some people suffer greatly from fatigue. I’m one of them.
Enjoy life never put off til tomorrow what you can do today. Think about labour saving ways, budget for someone to do jobs you would have ordinarily done yourself. Eg DIY or play with your baby.
I think of it as a condition that needs controlling with medication like diabetes . Being watched by a haematologist should keep you safe and to lead to a long happy life. Tip coming, drink lots of water to keep hydrated. Let us know how you get on
I was diagnosed at age 52 in 2008 with Et jak 2 which progressed to Mf about 10 years later. The good news is that in that time, there has been much research into mpns and there are new treatments coming out all the time. I did leave my career as a special needs teacher and got my license to sell insurance so I can make my own hours, to handle my fatigue. It took me a long time, but you will learn how to manage your mpn over time. Since this is a life long illness, I learned not to freak out over every test result. You will also learn a lot from this group.
Same scenario here 38M ET-CALR. Everything everyone has said is true and just know that it is not a death sentence. It took me a couple months to get over hearing the diagnosis but not much has changed. What it has done is help me figure out what’s really important, and hopefully it will do the same for you. Love your kids and spend every day making them count!!
Welcome! As is always the case you have already received great advice here! You are also already making the best step by seeking out an MPN specialist. There are some wonderful hematologists out there but the vast majority really do not have the experience, knowledge, tools to deal with MPNs.
I was 43 with 4 kids under 10 when I received my first set of elevated platelet readings and a suspected ET diagnosis. In the first 9 years, I had been on aspirin and monitoring and except for some fatigue really did not experience any issues (interestingly enough in my case the more I exercised the less fatigued I was - go figure). Last year after a significant increase in platelets (from cycling around the 650-800 range to 900-1150 with one 1400 reading) - I had a bone marrow biopsy and an official diagnosis of ET Jak2+. I started cytoreductive therapy also last year (after the spike in platelets and a bleeding episode) initially Hydroxyurea and more recently switched to interferon ((Pegasys).
My MPN specialist is always quick to remind me that it is more likely that I die with ET than from ET. Now at 53, I choose to be vigilant, be an informed, assertive patient (advocate for myself); try to be as generally healthy as possible and keep living life. Lean a lot on this forum and the combined community knowledge and experience.
In your Jak2 results, did they provide an allele burden? (percent of cells that are mutated) This is a number you should have at the start as it should be tracked through your journey. You can get this info from blood draw or BMB (Biopsy).
One currently available therapy, interferon, can reduce your allele over time and can have other benefits. (and risks) Note Solyesh here is on Pegasys, this is one type of interferon that is used off label for MPN.
Among the Drs who lean toward interferon, the preference is to start early. If you plan to consider interferon, also weigh whether you should delay starting. One quote you can find on the Voice here from an expert essentially says "MPN is the only cancer for which watch and wait is the default."
But you and your Dr may decide not to treat it this way, or at all for now. In any case the decision should result from a fully informed discussion with your specialist.
Another item to discuss is NexGen sequencing. This looks for mutations beyond Jak2, Calr, MPL. I had 54 genes searched. It is likely the info from this will be of use esp with the many future treatments that are likely to be available to you over your long life to come.
I’ve reviewed my results again and it appears only Jak2 v617f was tested and found positive. No mention of allele burden or others. Many tests were not performed according to the results, ie CALR, Jak Exon, etc.
My last count was 696 and during initial consult where blood was drawn the hema did mention watch and wait but wanted to run tests regardless. I got the alert and viewed results this past week, but don’t have followup to review them until end of month.
I do plan to ask many questions, and haven’t any idea if medication will be suggested. If aspirin is mentioned I will start it, but if any other med is suggested I may wait until I see the MPN specialist I got referral to.
I found a doc in Boston who specializes in MPN and heads up a research program there and feel I’m best served allowing her to consult and plan a course of treatment. My local medical groups are great but nowhere near the same quality as Boston.
Ironically at the age of 66, I decided to donate my plasma after having Covid in July 2020. I was rejected because my platelets were 700. I received a letter in the mail from the blood mobile that I had went to and it said take this to your doctor. She seemed unconcerned because it was under 1 million but sent me to a hemotologist. They did several blood work ups and decided to do a bone marrow biopsy. It came back positive for the Jak2 gene and I was put on hydroxyurea and aspirin. I am also taking Plavix. I’m doing fine but am tired at times. I keep wondering if I need an MPN specialist even though I see my hematologist every 3 months. Also, I want to travel overseas and am worried about blood clots when sitting for 8-10 hours on a plane. Any advice is appreciated.
I went from uk to America a few months ago. It was fine . Wore support stocking. Walked around frequently and did some lege exercises and stretches . Also drank lots of water. I did manage to fit in a couple of excellent films in between above!!
Hi Auggie. You ought to seek advice from your doctors about overseas travel to be sure. For a long trip of 17 hours I was advised to: wear medical compression stockings, drink lots and lots of water, get up and move around every hour, do the in-seat exercises recommended by airlines every hour, don't drink coffee. And finally, I was prescribed Clexane blood thinning injections you do yourself - one 12 hours before departure, one at airport before departure and one within an hour or so of arrival. It's a good idea to go out and about and keep living and travelling. Good luck.
Auggie last week I took my first flight since my ET diagnosis, was nervous but it was fine and I’m delighted I did it! Sat in an aisle seat with extra leg room so I could stretch, set alarms on my phone to remind me to get up and move around every 30 minutes and drank LOTS of water which also forced me to walk to the bathroom regularly. I’m also on innohep and aspirin so trusted that the blood thinners would do their job.
Hope you have a fantastic trip should you decide to go!
Welcome Jaffar. I was diagnosed with ET 35 years ago. I am now 85 YO! I have taken hydroxurea plus 81 mgs aspirin daily since diagnosis as my platelets were over 2M at the time and I had significant symptoms. I have taken the meds and had my blood tested about every 3 months all these years. I suggest you follow the specialist’s recommendations and not worry about less time with your wife and baby. You most likely have a long, healthy and happy life ahead of you. My best wishes to you and your family.
Hello I just saw your post and was wondering about the aspirin at age 85, I have read so many things about aspirin being detrimental to older people., but I cannot find out any information about it being given to specifically older patients with the hydroxyurea. I have essential thrombocytosis and I have been taking hydroxyurea twice daily for a little over a year, and handling well, but without the aspirin, because I couldn't take it due to stomach acid, but now have been recommended to take it, I am wondering how and when you take this, I am terrified right now ie to take it and the results and not to take it and the results. Is there any information you can give me. I would appreciate it thank you
I am 4 weeks today diagnosed at first. they said ET, but after my 2nd blood test, they phoned me and said it was PV; my blood count was 1120. They gave me a key worker, so there are any issues I can just ring her. They prescribed me clopidogrel, which I have had before as I have Lupus Disease. And started me off on chemotherapy tablets. I had my bloods again today. I also have the jax2 mutation, which is quite rare. Tablets make me a bit tired, and after about an hour, I have headaches and feel sick for about 2 hours.
Then it goes off but comes back later on in the day.
I have carried on as normal no major issues yet for now anyway.
Sending you a massive hug and buckets of empathy 💚When I was first diagnosed I didn’t quite believe the more experienced folks here who told me I’d get to a stage where I wasn’t constantly thinking or worrying about my future (or lack of!) with an MPN. I promise you they were 100% correct, once you wrap your head around the diagnosis, get the right medical team in place and decide on your treatment approach your worry will start to settle and it will just become a regular part of life. ET isn’t a death sentence and any progression that might happen is generally very slow with plenty of opportunity for intervention as long as you’re well monitored.
Go easy on yourself and make full use of this wonderful little corner of the internet for education, support and an outlet, it’ll do you a world of good! Being diagnosed is a rollercoaster and takes some time to adjust. You’ll get there 💚
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Something to look forward to in an otherwise scary time. Best of luck. I'm sure you'll do fine
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