About

I was diagnosed with Essential Thrombocytosis in Feb 2010 by a Hematologist. I am currently in my early 30s and symptoms like fever, headaches, dizziness and sweating for more than a week triggered me to seek medical attention as it is not a normal fever that I used to experience. With the doctor’s recommendation, I went through a full blood picture examination to rule out Dengue fever, which is quite common in asian countries due to the climate.

The outcome of the blood examination was surprising and yet something to worry about. My platelet counts were more than a million (normal person’s platelet count: between 150,000 to 400,000 platelets per microliter of blood). I was immediately referred to a Hematologist for professional and specialist opinion and treatement. I was put on Hydroxyurea and Aspirin to reduce my platelet counts. With known side effects from the Hydrea treatment (see Treatment section), I was recommended for the Interferon Alfa injection, which I took once a weeek for 1.5 months. However, there is also a side effect from the treatment, which defers from different patients. It impacts my liver and I was immediately removed from the treatment. I was then administered with “Essentiale Forte N” which supports the liver function.

I was lucky at that moment as my platelet counts went down to the normal level of 405,000 and within weeks my liver enzime and function was back to normal level. I have not been on any treatment for the past few months. However, I am on constant observation by my Hematologist as I was told that I might suffered from high Platelet counts again in the near future.

I am still battling this non-curable blood disorder with many other patients worldwide, until I hope that one day that medical science will be able to find a cure.

This blog is meant to share experience, knowlege, news of new researches on blood disorder, meeting new friends who also suffered from this disorder and hopefully to share our concerns and hope for a better future to find a cure for this blood disorder. This site does not provide a professional medical opinion and will not be responsible for any medical attention or decision for treatments. Please seek a professional Medical Doctor or a Medical Specialist to diagnose and treat your case.

 

Bryan Tan
31-Dec-2010

 

* I am running a survey to find out ET patients around the world and their location. If you sufferred from the following blood disorder or knows someone who does, please leave your comment(s) and share your thought(s) on ET. Please include the following information.
Country of origin, Sex, Age, Ethnicity

  1. Bryan
    December 29, 2010 at 6:07 pm

    Name: Bryan Tan
    Country: Malaysia
    Sex: Male
    Age: 32 (as of 2009)
    Ethnicity: Asian Chinese

    • Rex Nemesis Rivero
      April 15, 2013 at 2:59 pm

      Hi i just find out today that i also have a Essential Thrombocytosis my platelet count range from 600,000 to 950,000 my Hematologist prescribe me to take Hydroxyurea,.
      I’m confused and depressed right know,..Im from Philippines, 23 years old. please give me ideas about this disorder, i’m really scared,.

      • Shiea Grace Casis
        May 15, 2013 at 2:53 am

        Hi Rex. I am Shiela from Quezon City. My father has been into the disease since 2006. Would it be possible if we can share our experiences? Please reply.

    • Shiea Grace Casis
      May 15, 2013 at 2:51 am

      Dear Bryan,

      My name is Shiela and I am from Manila Philippines. I am very happy to find a website wherein I was able to read about ET. My father is suffering from the same disorder since year 2006. He is 63 of age now and Filipino-Chinese. His platelet at one time reached 1000 and he was hospitalized. I seriously thought he’ll leave us then, and only by then we have realized he’s suffering from ET. He’s into aspirin and only started with Hydroxyurea on the last quarter of year 2010. Other than that, he’s taking chinese herbs.

      I really wonder if I could have the chance to talk to you. My father is old and I really dont wish to see him in pain any more. Please reply. I would like to know more about your diet and medications. You are blessed your platelet has gone back to normal.

      • Rex Nemesis Rivero
        May 15, 2013 at 6:23 am

        Hi Shiea yes, im open for the possibilities, im in manila almost 2 weeks now and be here until my Hema’ gives me my medical clearance so i can work on board a ship,. hmm here’s my email add rr_blue28@yahoo.com, just pm me anytime. i also want to here your father’s experiences,. im from Bacolod City anyway..

    • Shiea Grace Casis
      May 15, 2013 at 2:53 am

      Dear Bryan,

      My name is Shiela and I am from Manila Philippines. I am very happy to find a website wherein I was able to read about ET. My father is suffering from the same disorder since year 2006. He is 63 of age now and Filipino-Chinese. His platelet at one time reached 1000 and he was hospitalized. I seriously thought he’ll leave us then, and only by then we have realized he’s suffering from ET. He’s into aspirin and only started with Hydroxyurea on the last quarter of year 2010. Other than that, he’s taking chinese herbs.

      I really wonder if I could have the chance to talk to you. My father is old and I really dont wish to see him in pain any more. Please reply. I would like to know more about your diet and medications. You are blessed your platelet has gone back to normal.

    • Caroline Boyle
      June 5, 2014 at 7:51 pm

      Name: Caroline
      Country: Ireland
      Sex: Female
      Age: 29
      Ethnicity: Irish

      I was diagnosed in 2010 when I was 25 after a routine blood test showed platelet count of 886. It is now around 1500. I am taking 75mg Aspirin daily. Thankfully I have no symptoms but I do worry about having to go on other medications and the impact on pregnancy.

      Caroline

    • Pat
      September 23, 2014 at 8:25 pm

      Name : Pat
      Country: Canada
      Sex: Female
      Age: 67
      Ethnicity: Caucasian

  2. January 4, 2011 at 8:20 pm

    Good luck with the blog!

    • Bryan
      January 10, 2011 at 3:10 pm

      Thanks Michelle. I read your blog that you have extensive involvement with the non-profit organization on MPD. Great to know that there are organizations who are helping each other to understand our disorders. I hope that the information in your blog could provide us with better understanding of the disorder and hopefully could find a cure one day.

  3. julie70
    January 8, 2011 at 11:07 pm

    Hi Bryan!
    I am excited to read more posts from you! It is difficult to find blogs about ET. I have a blog, too, it is http://julie70.wordpress.com/. Come by and take a look, maybe we can be of help to each other.

    To help with your survey, here is my info:

    Name: Julie Grinnell
    Country: United States
    Sex: Female
    Age: 41 (38 at diagnosis)
    Ethnicity: Caucasian

    Best of luck with your blog!

    Julie

    • Bryan
      January 10, 2011 at 3:21 pm

      Hi Julie!
      It is indeed a relief for me to know that there people like us sufering from this rare disorder. I am pretty excited too, to share my experience and also to know from others of their treatments and experience. I’ve stopped any medication at the moment for the past 3 months now since my platelet counts went down to ~405,000. I was told by my Haematologist that the count may increase again and I will be on constant monitoring. Recently, I’ve been having headaches and signs of fatigue again. I will be having my regular check up and platelet counts this week. Wish me luck!

      Bryan :)

  4. January 16, 2011 at 5:50 am

    Bryan –

    It helps to know others are going through the same journey. I was very happy to find your blog and Julie’s blog. I started my blog to write about my family and it has turned into a health blog about my experience with ET http://ourbeautifulandmessylife.blogspot.com/

    I look forward to reading more of your blog entries.

    For your survey:
    Name: Susan
    Country: United States
    Sex: Female
    Age: 34 (was diagnosed Jan 2, 2011)
    Ethnicity: Caucasian

    Thanks for your sharing your journey –
    Susan

    • Bryan
      February 10, 2011 at 9:14 am

      Hi Susan,
      I was also glad that I am not alone in battling this blood disorder. It gives me hope and reason to live my life to the fullest. I read your blog and I do experienced the same situation and emotional disturbance when I first found out my case. I’ve learned to accept it and hope for the best and life our live healthy and positively everyday. Family and friends are as important before and after I found out my condition. You have 5 beautiful kids and a loving husband to support you. Think positively and do not give up no matter what. I learned to appreciate life more and do the things that I wanted to do when I took things for granted prior to my diagnosis. Looking forward to read more of your blogs and experiences that we could all share along our journey.

      Cheers.
      Bryan

  5. Sonja
    June 15, 2011 at 6:12 pm

    Hi Byran, I hope you get my email.I am suffering from the same blood disorder for the past 12 years. I have been on so many different medications for this problem. Due to all the different medications I have developed other medical problems. My symptoms are getting worse and I have seen my doctors have given up and told me to live with my symptons and accept my health is getting worse. Please do you have suggestings for me.

    Sonja ( South Africa )

    • Bryan
      June 22, 2011 at 2:59 pm

      Hi Sonja,
      Based on multiple discussions with my Hematologist, treatments react differently to different individuals. My platelets went down last year when I tried Interferon. I’m currently not on medication for more than 6 months, but my last blood screening shows that my platelet is increasing again. I might be back on medications again soon – but I hope not. There’s been ongoing researches for this type of disorder but do not have a definate answer to the cure yet. Even if your current doctor has given up on you, but you shouldn’t give up yourself. It is true that we need to accept the fact that we suffered this disorder, but you are not alone. Try seeking second opinion if you have not and live your life to the fullest. BTW, you could also join facebook group where there are others like us facing this challenge in our lives.

      https://www.facebook.com/home.php?sk=group_9686810852

      I’m also trying to live a healthy lifestyle. Exercise regularly and eat the right balance of diet. All the best and please do not give up. I understand that it’s easier said than done, but we must have hope to move forward no matter what. :-)

      Cheers.
      Bryan

  6. Michele
    June 20, 2011 at 12:45 am

    Asuncion, Filipina (Malay Race)
    diagnosed with ET around age 52
    passed in August 2009, age 62
    received Hydroxurea and Anagrelide therapies
    sufferred from high-blood pressure
    died from complications of strokes

    She is my mother.

    • Bryan
      June 22, 2011 at 3:05 pm

      Hi Michele,
      I am sorry for your loss and I share your grief. Please accept my deepest sympathy and thank you for sharing with us.

      Cheers.
      Bryan

  7. Tim
    June 23, 2011 at 12:50 am

    Hi Bryan,

    I am a 37 year old male from New Zealand, diagnosed almost 3 years ago with platlets of around 1.2 million. Now on Hydroxyurea and asprin and getting on with life, albeit with slightly more urgency. 3 monthly blood tests and an annual check up, I don’t expect to have any complications for many years, and by then there will be a cure/treatment, I am sure. I have three kids under 5, so I don’t have time for complications for the next 15 years!!

    Diagnosis was a psychological blow for the first 3-5 months, then I learnt to live with it. It could have been much worse.

    It has lit a fire under me, and I am more ambitious and driven, and appreciate what I have, so it may be a good thing!!

    Keep in touch.

    Tim

    • Bryan
      June 28, 2011 at 3:31 pm

      Hi Tim,
      I understand how you feel and learn how to deal with it. I couldn’t agree with you more that I too am more ambitious and courages in embracing challenges in life nowadays. What else could be more important than to view life in a different perspective and appreciate the things that we have. Take care.

      Cheers.
      Bryan

  8. anne
    July 27, 2011 at 8:15 pm

    Hi Tim
    For your survey:
    Name: Anne
    Country: United States
    Sex: Female
    Age: 43 (was diagnosed May 2009)
    Ethnicity: Caucasian
    Started with migraines and got CBC and everything was high. Plattlets
    were 920…averaging 330 now. take 1 hydroxyurea mon-friday and 81mg of asprin a day…so far so good
    cheers
    Anne

  9. daybluv
    December 22, 2011 at 2:13 am

    Hi,I am a newly diagnosed ET patient,I suffered a stroke at38 yrs old. This has hit me like a load of bricks.I really feel like I am batteling this alone.I am also a diabetic withno insurance.I am still having high platlet(596)at the last check.I am feeling a lot of fatigue and dizziness.

    • Bryan
      March 1, 2012 at 10:51 am

      Hi daybluv,
      You are not alone. That’s what I’ve discovered over the years when I was first informed of my condition. It was mentally challenged at first but once I’ve accepted it, I am able to focus on how to be healthy and appreciate life more. I am now trying to live a healthy lifestyle by forcing myself to exercise every week (swimming and gym). I used to be fatigue and weak but I started with light exercise and it really helps me. My dad is also a diabetic and he’s 69 this year. He managed to control his sugar level by eating well and exercise often.
      You may also want to consult your doctor for more advice on how to best treat your condition.
      Best of health to you and we are all not alone in this. :)

      Cheers.
      Bryan

  10. Mary
    February 14, 2012 at 11:18 am

    Great blog. You all may wish to check out Mpdinfo.org and then specifically the mpn online support group which hosts thousands of people worldwide corresponding daily about the latest research, medical strategies and ways they deal with symptoms and side effects of treatments. Best wishes, Mary wife of PV husband diagnosed in 05

    • Bryan
      March 1, 2012 at 10:32 am

      Hi Mary,
      Thank you for sharing the link. Very informative indeed.
      Wish the both of you best of health and stay positive and strong.

      Cheers.
      Bryan

  11. Nancy
    March 15, 2012 at 9:20 pm

    Hi Bryan,
    Just read your blog and found it interesting – would have been useful when I was diagnosed with ET back in 2008 with platelets at 1.5 million at age 48—–platelets had been over 700,000 since 2004 but GP didn’t say anything as I had no other risk factors. In 2008 I was having visual disturbances and a massive bruise on forearm after only a slight bump. That coupled with platelets of 1.3 mill on CBC got me the chance to enjoy the bone marrow aspiration and biopsy. 1.5 mg Anagrelide and a baby aspirin daily have kept the platelets to around 385 ever since. As my hemotologist says “other than the ET, you’re the picture of health!”
    Bottom line is everyone has something to deal with…ET just happens to be it for us.
    Stay well,
    Nancy, Age 52, Female, White of Croatian and Finnish descent

  12. Catherine
    May 11, 2012 at 2:29 pm

    Hi Bryan

    Catherine here.I’m 39 years old. I’m Irish but have been living in Holland for the last 15 yrs. Was diagnosed last Nov with ET. Platelet count was crazy-went up to 3million at one stage but back down now normal now at 215 million. Suffered a pulmonary embolism about 2 weeks after beign diagnosed so still on treatment for that. I guess I was lucky. Have no symptoms of the disease now they tell me but plenty of side affects from the Hydrea, tingling or shivering all over being the worst one as I can’t sleep with it. Haemoglobin count is and white blood cell count down too so Hydrea dosage has been adjusted too I would love to hear how others have got on on this drug? I’m taking 1500mg daily (=3x 5000mg tabs). And Acenocoumarol treatment for the pulmonary embolism. I am being taken off the Hydrea for a few days next week to see for certain if the side affects are due to that. Great to know there are others in the same boat. And great job Bryan setting up a world wide blog!!

    • Bryan
      May 11, 2012 at 7:45 pm

      Hi Catherine,
      Thank you for your support on my blog!
      215 million is still pretty high. I took Hydrea in the past and it is not something that I would favour. I had similar problems like feeling fatigue all the time. I took Interferon (Pegasys) as an alternative option and it does help to reduce the Platelet counts but with some side effects:
      – tiredness and weakness
      – loss of appetite
      – skin reactions
      – hair thinning
      – trouble sleeping
      – inflammation on liver

      http://www.pegasys.com/patient/index.html

      I hope that your current treatment plan will ensure that you get back on the right track. All the best to you and yes, we are not alone in this one.

      Cheers.
      Bryan

    • ema
      March 30, 2014 at 6:28 pm

      Hi Catherine ,
      I share u the same illness & somehow the same suffer , but what doubles my trouble is that Im living in a country with a primitive medicine & no enough pharmacological sources , my hematologist adviced me 2 take anagrelide but I couldn’t find it here .
      I’m looking forward to go back 2 Ireland , I need health care & I hope you can help me to get the benefits of the health cards .
      please contact me my email
      wafa_ema@yahoo.com
      we may help & support each other , getting the correct treatment & carrying on isn’t easy .
      Wish u the best .
      Ema .

  13. Catherine
    May 12, 2012 at 12:49 pm

    Hi Bryan,
    Yeah sorry I think I got the figures wrong It was at 3200 at it’s worst and went down to 215 on my last check. Anyway, the point is the platelet count is very normal now. What did you not like about the hydrea? If I look at your list of side affects for the Interferon I would say they are pretty rough too……………….had you worse experiences with hydrea? And what sort of dosage were you on? I’m on half the max dose for my weight at the moment. =3 tabs but I ithnk it can be further reduced. I have another check in 3 weeks. They had to use a very high dose in the beginning to get it under control and I am hopeful it can be reduced. But I often wonder how hydrea compares to interferon in terms of how you feel. Does it reduced your red blood and white blood cell count too like the hydrea does? Would love to hear your experince. Thanks so much for setting up this blog!

    • Bryan
      August 6, 2012 at 4:08 pm

      Hi Catherine,
      Great to hear that your platelet counts are down to 215 – at the normal level! Hope it will maintain at that level.
      Initially, when I was first diagnosed, my platelet counts were above 1,000. My Haematologist was concerned about the high level of platelets and was put on Hydroxyurea (hydrea) imediately. I was taking hydrea (500mg) – (2 capsules – once a day) and aspirin (100mg) – once a day for a few weeks. It was considered as high dosage for me and was feeling fatigue and depressed. After my platelet counts dropped, I gradually reduce the dosage and frequency of the intake (twice a week). I was then introduced with Interferon (administered by injection – once a week). Each time I went for a check, I have a full blood count that includes platelet counts, red and white cells. Red and White cells were at normal level for both of my treatments.
      Hydrea is a chemotherapy drug where else Interferon are proteins. I can’t really tell the difference, but both hydrea and and Interferon seemed to made me feel dizzy/tired most of the time. For Interferon, I administer it via injection through my thigh once a week by myself, while if I’m on Hydrea I need to take the medication a few times a week.
      I’m glad that we all share our experiences here and I hope that it will be beneficial to everyone. I will be having my platelet check end of this month – Aug. Hope the result will turn out well.

  14. Beth
    June 23, 2012 at 7:51 pm

    Name: Beth
    Country: England
    Sex: Female
    Age: 29 (24 when diagnosed)
    Ethnicity: Caucasian

    Hi, I was diagnosed with ET when I was 24 years old after a routine blood test showed I had a platelet count of 1 million 700,000. Have taken Hydroxyurea & asprin on and off for 5 years – have never had a problem with this medication. Had to come off this when I had my little girl (who is now 2) and was on Intron A injections for a year – made me feel really bad at first (flu like symptoms) but this stopped after the first few weeks and got on okay with it. Went back onto Hydroxyurea when my little girl was born. But have recently been put back onto Intron A injections as platelet count was still rising and had started to have to take 3 tablets Mon-Fri and 4 at weekends. Intron A injections this time are making me feel really tired constantly – hopefully this will settle soon.
    It’s interesting to hear how other people treat their ET as have never spoken to or heard of anybody else with this condition.

    • Bryan
      August 6, 2012 at 4:17 pm

      Hi Beth,
      That’s a very long time – taking Hydrea for the past 5 years. I agree that Interferon makes you feel dizzy as I had the same scenario initially. I hope that you have a suitable treatment plan with your doctor. According to my Haematologist, every individual will respond differently with each treatment. Our human body is very complex and reacts differently with different method of treatments. Best to consult a Haematologist that could monitor your case and provide recommendations. I see that there are many patients sharing their comments in this blog and I hope that it will bring benefit to us all.
      Hope you’ll feel better soon. BTW, congratulations on your new born baby girl :).

    • Jennie Barnes
      September 13, 2012 at 11:44 am

      HI Beth,

      Did you stop taking all your medication completely when you where pregnant, I really want to start a family but so far have been told that I won’t be able to as even if I don’t take my medication for a week my platlet count shoots up! I have had ET for 10years now and am only 23.

      Hopefully you can give me some advice on how you coped with starting a family.

      Thanks

      Jennie

      • Beth
        October 8, 2012 at 7:36 pm

        Hi jennie,

        Sorry I have only just seen your message – had t checked the site for a while.

        I took intron a injections & aspirin when I was pregnant – I had been on hydroxicarbomide previously but when we told my haematologist that we wanted to start a family he changed me to the intron a (interferon) injections. Once they had got the levels & amount of injections right this medication seemed to be fine while I was pregnant – no side affects for me or baby – when I had had my daughter I was put onto warfarin for afew weeks to make sure I didn’t clot & all worked out well. Was under the consultant while pregnant & they keep a really close eye on you. I am now 10 weeks pregnant again & am on the same medication as previously. All will hopefully be the same as before!

        Which medication are you on? Have a word with your haematologist about the injections as they have worked for me – I know all cases are different but there should be a way they can help you start a family.

        Really hope that helps you – any other questions at all that you have please ask – I will check more regularly now!

        Beth x

  15. Jan
    July 24, 2012 at 12:53 pm

    Name: Jan
    Country: Scotland
    Sex: Female
    Age: 60
    Ethnicity: Caucasian

    Hi, Apparently, during bloodwork for something else, it was discovered 7 years ago that I have ET. No one thought to tell me about it though, until I turned age 60 earlier this year and was receiving treatment for something else (vaso vagal syncope). I was started on 500mg Hydroxyurea and 75mg asprin in March, bloods monitored fortnightly. Four weeks ago, as the red cells weren’t responding, my dosage of the Hydroxyurea was doubled – 500mg in the morning and again in the evening.

    Last Friday I had a sudden sharp pain between two of my toes and on inspection found a deep reddening of the skin and radiating pain and excruciating itching, followed by a huge blister. By Sunday evening I had a maddeningly itchy pin prick type rash over the whole of my torso, arms and legs from the knees up. Ended up at the emergency doctor at four o’clock this morning – he immediately suspected the Hydroxyurea and advised me to stop taking it and the aspirin immediately. He took blood and a sample of the content of the blister, prescribed antihistamines and an antibiotic for the infection on my foot. He phoned later to say that the white blood count was low and reiterated that I must stop taking the Hydroxyurea. I am currently awaiting a call from my consultant at the hospital to discuss alternatives. Despite antihistamine and prescribed lotion, I still would love to rip my skin off. And now I’m scared about the low white blood count. I hate getting older.

    • Bryan
      August 6, 2012 at 4:30 pm

      Hi Jan,
      I’m sorry to hear that you have to go through all the pain. I share your frustration, pain and concern that you need to go through. Hope that your consultant could get a suitable plan for you soon. We are all afraid of suffering illness certain things that we could not change in life, but I do hope that you will continue be strong and get well soon.

  16. charles
    September 5, 2012 at 2:43 am

    I was diagnosied with ET about 10yrs ago. I intially had a short span of hydro. I read up on it and preferred Anagrelide. At first it was difficult to accept the anagrelide. I slowly built my tolerence up to it. I am on on 1.5 mg. daily. I would take .5 caps sometimes to help me build up my tolerence to the drug. I used to experience headaches and difficulty breathing bouts. Now my body seems to be acclimated to the drug. I am 60 now, and look forward to a cure before I leave here. Hope they have better success in treating this disease. I just read where pfizer just released a new drug for treating a disorder of an over abundance of white blood cells. Maybe soon something better for us will be developed..

  17. jenny
    September 7, 2012 at 3:53 pm

    hi bryan ..
    iam really excited to read your post .. i was suffer with this ET for 3 years now..has gone for many medication.. i feel relief to know that there are people who suffer the same like me :

    name: jeny koerniawan
    country : indonesian
    age : 34
    ethnicity: chinese – asian

    best luck for you :)

    • Bryan
      November 30, 2012 at 8:57 am

      Hi Jenny,
      I’m glad that you’re felt relief. We are all not alone in this and hopefully you find a good combination to treat it. Also, hope that your platelet levels are at a manageable level now,

      Cheers.
      Bryan

    • Monica
      November 12, 2014 at 12:51 am

      Hi Jenny,

      My name is Monica also from Indonesia and I am 28 years old now. Just wondering if you have a doctor that you usually consult your ET with in Indonesia.

      And also, do you have children? I am planning to have one next year and is worried now. let me know. You can also contact me on my email monica.kang01@gmail.com

      And thanks Brian for having your blog. It’s good to know I am not alone. Looking for the right doctor now. Was diagnosed 2-3 years ago by this doctor in Singapore. However, he said since my platelet counts is around 600,000 and I am not showing any symptoms, He didnt recommend me to take any medication. I am hoping to get second opinion from other doctor because from what I have been reading most ET patients are in fact on medication.

      Cheers,

      Monica

  18. Jennie Barnes
    September 13, 2012 at 11:37 am

    I’m 23 years old, I live in the UK and have had ET since I was 13years old. I was first started on HU and stayed on it for 4 years before being moved onto Anagralide which I was on for another 3 years. For the past 3 years I have been on an injection called peginterferon alpha. I have had the same side effects on all the different types of meds such as tiredness and hair thinning but other than that I have been perfectly healthy. Even though my immune system is lower than most peoples I don’t get ill any more often and the only noticeable thing is that it takes me a couple of days longer than a ‘normal’ person to get over the common cold!

    I have lived with ET for the past 10years and it hasn’t changed or affected my life in anyway.

    However if anyone can give me any advice on what comes next I would really appreciate it! I would love to start a family soon but all the meds advise not to get pregnant whilst taking them and for 6months after being on them. Has anyone been through this?

    Thanks

    Jennie

    • Beth
      October 8, 2012 at 7:40 pm

      Jennie I have now replied to your post by mine – hope this helps you

      Beth

  19. Diane Coward
    September 19, 2012 at 7:24 pm

    Hi, about 7 years ago I was admitted into hospital and had to have a scan and was told that I had a portal vein thrombosis I was put on warfarin, 3 weeks later I had another scan and I was told I had a splenic vein thrombosis and a large spleen. Then 4 years later I went for a routine blood test and was told my platelets were high after having a bone marrow I was told I had ET. I was put on Aspirin and had to have regular blood checks. It was 2 years later before i was put on medication (Hydroxycarbromide capsules) to reduce my platelets, so far so good. I am 55 years old I lead a normal life I go to the gym 3 times a week, the only thing I do seem to have are headaches and occasionally dizziness. ( don’t know wether they are related to ET ?

    • Bryan
      November 30, 2012 at 9:01 am

      Hi Diane,
      It’s great that you are keeping your healthy life style (going to the gym 3 times a week). Dizziness and headache could probably be caused by the medication (Hydroxyurea) that you’re taking. I do experience similar symptoms previously when I took Hydrea. you might want to clarify it with your doctor who prescribe you the medication.

      Cheers.
      Bryan

  20. Lynda
    October 4, 2012 at 6:21 pm

    Name: Lynda
    Country: USA
    Sex: Female
    Age: 51
    Ethnicity: Caucasian

    Bryan,

    So nice to find your blog. My doctor told me back in March of this year that I had “reactive” thrombocytosis which was discovered while I was battling anemia and an iron deficiency. My platelet count back in March was 1.4 million per m/l.

    A couple weeks ago I went in to get rechecked for the third time since March and my anemia had resolved and my iron levels are fine but my platelets remain at 900,00 so they dropped, but not enough. Next thing I know I’m having a bone marrow biopsy and just yesterday, I saw the doctor and got the final diagnosis of ET. Wow, really mind blowing stuff.

    Because I also have Type 2 Diabetes, he immediately prescribed Hyrdoxyurea and baby aspirin daily. So now I have two chronic diseases

    Oh well, I’m up to the challenge and I’m the type to just take life as it comes so after one day of throwing myself a pity party, I’m back up on my feet and out to learn all I can about this rare disorder. By the way, that’s the other mind blowing thing about ET is that it really is very rare.

    Thanks for sharing your story. I’ll be checking back!

    -Lynda

    • Bryan
      November 30, 2012 at 9:08 am

      Hi Lynda,
      Thank you for sharing your story with us here. It is mind blowing for me too when I first found out the condition I’m in. But over time, I manage to accept it and live with it.
      ET is indeed rare but apparently, it is growing as more patients are aware of it. There is also very minimal information on ET. Sometimes, I could hardly find any new information and updates on the treatments for this blood disorder. But, I do believe that our Doctors and Researchers will someday be able to get us a permanent treatment and help us to understand further on how we deal with it.

      Cheers.
      Bryan

  21. Barbara
    November 9, 2012 at 5:44 pm

    i was diagnosed with ET about 24 years ago – I am now 52. I had a platelet count ranging from 1.4 million to 1.7 million. I have taken Anagralide continuously since that time now taking 1.5 mg per day and my platelets have stayed in an acceptable level.. I have had no noticible side affects although i do worry about being on this medication for such a long time. I live in a relatively small town and I am currently being treated by my primariy doctor (an internist) and consult with a hemotologist very couple of years. I recently made an appointment with an oncologist in Dallas at UT Southwestern who is more experenced with this condition to make sure i am doing all that i can.

    • Bryan
      November 30, 2012 at 9:14 am

      Hi Barbara,
      I hope that your platelet counts are lowered now and within the normal count. It is a good idea that you check with an oncologist and hope that you gain some knowledge on how you’re doing. All the best to you.

      Cheers.
      Bryan

  22. Cate
    November 27, 2012 at 9:06 pm

    Can anyone explain itchy legs. I also have ET and am on Asprin daily.

    • Bryan
      November 30, 2012 at 9:16 am

      Hi Cate,
      Not sure about itchy legs when on aspirin. Could be something else that is affecting it. Best check with your doctor.

      Cheers.
      Bryan

    • Sonja
      March 4, 2013 at 11:27 pm

      I have itchy legs also, it started before I was diagnosed and not as bad now that I am on the aspirin.

  23. Sonja Hagmeyer
    December 6, 2012 at 1:28 pm

    Hello,
    I was diagnosed Oct 2012.
    I am 51 year old female, Caucasian,live in USA
    My count at last check was 875,000 at the time of my bone marrow biopsy, I have been taking 81mg. aspirin for a month, I go today for blood work to see if aspirin is working. I also have the JAK2 mutation. I have been having headachesfor the lastweek not sure they are related but nothing has helped to get ride of them. It is still scary not knowing, but very helpful to read everyones story I don’t feel so alone.
    Sonja

  24. windy
    December 20, 2012 at 7:57 pm

    I also have et and do not want to take hydrea because i fear it. I been taling two every night but it makes me exausted . Asprin should be ok other then the meds but i just dint know..i do know i have kids and grabd kids and i dont want to be so tired i cant live life with them..im only 42 and still have alit in me…helpppp please windy carlson

    • windy
      December 20, 2012 at 7:59 pm

      I forgot to mention my location . Sacramento california …ucd patient…

  25. windy
    December 20, 2012 at 8:04 pm

    I also have et and do not want to take hydrea because i fear it. I been taling two every night but it makes me exausted . Asprin should be ok other then the meds but i just dint know..i do know i have kids and grabd kids and i dont want to be so tired i cant live life with them..im only 42 and still have alit in me…helpppp please windy carlson name: windy age :42 region:united states cal ethnicity:english italian…

  26. January 2, 2013 at 2:26 am

    I am really afraid of hydroxyurea because of my age and my (old kidneys) as I will be 65 in march,2013

    • Bryan
      February 13, 2013 at 6:45 am

      Hi Joan,
      It’s best to consult your doctor or physicians if you have any concerns. Hope you’re doing better now. Take care.

      Cheers.
      Bryan

  27. Sonja Hagmeyer
    January 19, 2013 at 3:51 am

    Went for blood work today my platelets were at 852000 for the 2nd time but my red count was up. So the doctor wants to do a phlebotomy (remove blood) has anyone else had to have this done.

  28. Mike
    February 7, 2013 at 8:56 pm

    Hello,

    Thank you for creating this site. I was diagnosed with ET about a year ago. I’ve been taking Hydrea, 500 mg, twice a day and until recently the only side effect I noticed was really mild flu symptoms for a day or two.

    I run about 4 miles a day and recently I’ve been having problems with leg cramps. My dentist noticed that my gums had receded and that the amount of plaque on my teeth was much higher than prior visits.

    My oncologists so it was possible that Hydrea was the cause of the plaque and cramps. As anybody experience similar side effects with Hydrea?

    I’ve been trying to find supplements that help with bone marrow health, does anyone have suggestions for supplements?

    I’m live in Southern Oregon.

    Mike

    • Bryan
      February 13, 2013 at 6:43 am

      Hi Mike,
      Thank you for visiting and sharing your comments. I’ve not experienced any mild flu symptoms when I was under Hydrea previously. It could be due to the seasonal flu. It’s good to hear that you live a healthy lifestyle. I’m impresses, running 4 Miles a day!
      Hydrea does have side effects. Some that I’ve encountered during Hydrea intake a few years back were:
      – tiredness and weakness
      – loss of appetite
      – hair thinning
      – trouble sleeping
      You can refer to some of my comments and fellow visitors to my blog that share their experiences with Hydrea. We do however share some common effects – “tiredness and weakness”, which is why getting regular exercise could assist. I did swimming and hit the gym to keep myself from tiredness and after not been taking any medication for about 2 years now, I still ensure that I keep myself healthy.
      I’ve not been able to identify or have any knowledge of supplements that could help Bone Marrow health. Not that I heard of from my Hematologist.

      Cheers
      Bryan

    • Paige
      January 6, 2014 at 11:20 pm

      Hi my name is Paige,
      I am a Caucasian female from the USA, 44 years old and just diagnosed over the summer 2013 with ET. Platelets of 700 showed up on a routine blood test. I hadn’t had a blood test in a few years and it was just a whim that I went to the doctor to get a routine work over. I consider myself very active and in good shape for my age. After the initial visit to the doctor I did get a mysterious flu with chills, fever, nausea and fatigue but I really think this was the flu and not symptoms of the ET. Follow-up blood test showed platelets up to 800 about 1 week later so my GP referred me to a Hematologist/Oncologist, after a look at a copy of my blood work from my GP the Hematologist seemed to know exactly what it was. I still had the bone marrow biopsy and complete work up to confirm it was ET.
      Now I’m being seen every 3 months, taking baby aspirin only so far because I have few risk factors, but the platelets are over 1M and after reading some of the other posts now I’m wondering if I should be taking something else by now. I’ll have to ask at my next appointment.
      I’m responding the comment about the leg cramps. I walk about a mile to and from the train station and exercise daily. I too have leg muscle cramps and sometimes arm muscle cramps daily since I was first diagnosed and I also have the tingling in my hands and legs. However I’m not taking the Hydrea mentioned above. My doctor says the tingling is probably due to the dense consistency of the blood (all the platelets) which make it tight getting through the smaller blood vessels. Also, it is cold winter here where I live now and I find that my muscles seem stiffer with the cold weather than ever before.
      I had no idea how rare this disease was until after I started reading more. When you tell people you have this disease they have no idea what your are talking about. Thanks for having this website – it has been interesting reading about others all over the world with this rare disease.

  29. February 9, 2013 at 7:04 am

    Seems like I am the old man around here at 72 years of age. Diagnosed 3 years ago with ET. Have a jab of interferon weekly (more makes me really sick) Have the JAK2 V617F mutation ansd suffer greatly from aquagenic pruritus., which the Interfeon assist with.
    Am desperately tired on some days…in fact most days. Love to know what others do to combat this.

    Peter
    Perth Australia

    • Bryan
      February 13, 2013 at 6:54 am

      Hi Peter,
      I had the same frequency of interferon previously and experience similar symptoms. Tired and restless. I did some light exercise and swimming to keep myself alert. Also did some breeze walks in the evening.

      Cheers.
      Bryan

    • Marion Davis
      April 14, 2014 at 5:37 pm

      I must be lucky so far. I am 70 and was diagnosed 3months ago- with ET-on 500 mg hydrea 5days and1000mg 2days. Platelet count just over 400,000 now. Jak2positive. So far so good -marion Canberra Australia.

  30. andrew peaple
    February 15, 2013 at 10:01 pm

    Gender;male
    ethnicity;white british

    Hi everyone, my name is Andrew. I live in the united kingdom(county of Wiltshire). i am 41 years old and was diagnosed with ET 3 years ago, found out after having an accident at work. I started with interferon alpha injections(approx 6 months) but constantly iched so my haematologist put me on hydrocarbomide capsules x 2 daily plus asprin,(last 2 1/2 years). Dont know which is the worst iching from the injections or the constant headaches,pain in my feet and hands,night sweats and general aches all over from the capsules. Does anybody else get this much trouble?.
    My count was at first 950.000 microlitres but has now stabalised at around the 290.000-320.000 microlitres.
    I lost my full time paid job due to my headaches and have been a full time dad to my two young daughters since. though i keep busy with my voluntary work.( it keeps my mind off the condition).
    I do not know anybody else in the U.K that has ET,though my doctor says approx 60 others have this condition country wide that they know of. Would be great to hear from them.

    • nicky
      April 27, 2013 at 12:03 pm

      Hi my name is nicky i live in the west midlands in the uk, i have et the highest my platlets have been is 18 million ,im on asprin and hydroxyurea,down to 5 now and slightly anaemic.i have itching to, really bad sometimes and blurry vision.i seem to feel tired a lot but the doctor says its not connected.i have pins and needles ,sometimes dead hands in morning and restless feet at night in bed.im 46 years old had et for past 6years but only found out just under 3 years ago.no known cause for my et hope your feeling better x

      • Janet Robins
        July 4, 2014 at 9:30 pm

        Hi Nicky, my name is Jan and I was diagnosed with ET
        2 months ago. I also live in the West Midlands and attend a Hospital in Redditch. the UK, have the same symptoms apart from itching, always feel very tired. My count was 900 and has gone down to 600. You are not on your own with this disease, and we all hope things will get better in the future. I am 70 years old, and have a son your age, and would not like him to have to put up with something like this. Keep smiling.

  31. Sonja
    February 20, 2013 at 8:58 pm

    Hello, Just wondering how everyone deals with the fatigue? I am wiped out and look like a walking Zombie. I am on 325mg Aspirin a day only. Just had a bad episode of headaches and my hands and feet hurting/tingling. That is when they increased the aspirin from 81mg to 325mg it did releave the pain but still just dragging. I sleep 8-9 hours a night (good sleep), I try to exercise at least 3-4 times a week (when I have the energy). I start my day with a Green Smoothie with Hemp Protien, I stay away from processed foods and red meat due to my diverticulitis (sp?). Also the doctor just checked my Thryoid and it is fine.

    • February 26, 2013 at 11:27 pm

      Hello Sonja! I just thought I would share my experience with fatigue. I was sooo tired most of the time and I tried everything to combat it. I was drinking Red Bull to get through my days and my doctor told me to stop and switch to coffee or tea. I take my vitamins and aspirin at night whenever possible. For some reason they make me sleepy. I know some can’t, because they have to take doses throughout the day. I also consulted a sleep specialist and he determined that I have sleep apnea. I was surprised, because I thought I was getting good sleep since I was out like a light the minute my head hit the pillow. Now that I have a CPAP, life is good. I make it through my entire day without needing a nap. I still have very little energy, but I find that if I eat small meals throughout the day and don’t eat a heavy dinner, I feel much better. I am increasing my exercise and that seems to help alot. I also drink ALOT of water. I feel so much better when I do. Unfortunately, I am now addicted to coffee and tea, but I’ll take that over the alternative. I also get the tingling in my legs and feet and sometimes my arms and hands. For some reason my doctor feels that it’s not a symptom of ET. He also doesn’t believe my headaches behind my eyeballs are a symptom as well, so it can be frustrating. Sometimes it feels like someone has put a rubber band around part of my body and then suddenly removed it. I have those sensations throughout the day. I’ve just learned to take it day by day and not focus on what I’m feeling within my body, but I focus on what’s around me and that helps. Thanks for sharing your story.

      • Sonja
        February 28, 2013 at 12:47 am

        Jerrie, I have now gone to my family doctor(who happens to specializes in sleep disorders), and he do not see any reason I should feel this way. So he wants me to start with the SAD (Seasonal Affective Disorder) light therapy, since I live in the Pacific NW he feels I might not be getting enough sunlight. So I bought a light today and will let you know how it works. I did get the same feeling from my Hematologist that the fatigue is not part of ET, but they did up my aspirin when I complained about the tingling and pains in my hands and feet and it helped except now I have bruises all over my legs.

  32. February 26, 2013 at 11:08 pm

    Jerrie
    Female 41 as of 2/13
    Diagnosed at 38
    United States

    I have been diagnosed with ET and I haven’t opted to do the bone marrow biopsy. My doctor wanted it done, but my counts have stayed below 600 for the most part. I don’t see the need for it until further treatment is necessary. I am only on fish oil and aspirin. I’ve had fever with chills, fatigue, and tingling along with seeing stars. Luckily, most of the symptoms that I first had are now gone. I asked my doctor to do blood work, because I was not feeling right and knew something was wrong. In the 3 years that I’ve known about it, my count has only gone up as high as 679. I consider myself lucky. My fear is that my life expectancy isn’t as long as my parents. I am told that life expectancy is that of a person without ET, but most of those diagnosed are already well into their 50s and 60s. I hope we all have the longevity we hope for! Thanks to all for sharing your stories.

  33. Mike
    February 26, 2013 at 11:22 pm

    I thought I’d post about my experience with the bone marrow biopsy. In a nut shell, it was no big thing. In terms of discomfort, getting my teeth cleaned at the dentist is much worse. I stayed awake for the entire procedure. The process required me to lay on my stomach. The spot where the biopsy was to be performed (slightly above my right butt check) was numbed and a needle was slowly inserted until the marrow was reached. The sample was withdrawn, a bandage about 3 square inches in size was applied and I drove home. I was instructed to keep the site dry for three days.

    That’s about it…the entire process took less than an hour.

    Mike

    • Sonja
      February 28, 2013 at 12:54 am

      I had one also and didn’t find it that bad. Mine took awhile (over and hour) as she had a hard time getting through my bone. The procedure didn’t hurt at all but I was very soar for a couple of weeks.

  34. Lynda
    March 11, 2013 at 4:51 pm

    I have a question about finger numbness. I was diagnosed last September with ET and I am currently taking a baby aspirin and 1500 mg Hydrea daily. My last platelet count about a week ago was 575,000 down from 1.4 million at it’s highest.

    About a month ago I woke up with numbness in two fingers on my right hand, the pinky and the ring finger. It’s never gone away. No tingling, just numbness. I don’t see the Hematologist until next month but I remembered that when I do see him, he always asks about tingling or numbness in my hands/fingers.

    Anyone else had this happen? I figured I’d bring it up next time I go to the Hematologist but maybe I should get in sooner?

    • Sonja
      March 11, 2013 at 5:17 pm

      I do have the tingling in my fingers and feet but they are never numb. but they do get cold to were they hurt.

      • Sonja
        March 11, 2013 at 6:43 pm

        I have never taken Hydrea only on 325mg of aspirin. Started with only 81 mg of aspirin but my doctor increased the aspirin to reduce the pain in my hands and feet and it did help.

    • Lynda
      March 12, 2013 at 9:24 pm

      An update: I went to see my primary doctor this morning and she thinks the finger numbness is related to my job, not ET or the Hydrea. She said if it was the meds the numbness probably wouldn’t be so localized to just two fingers. Makes sense when I think about it. She thinks it’s nerve inflammation from using a computer mouse 10 hours a day at work.

      For now I’m going to go with her theory and see if wearing a wrist support works. Thanks for the replies!

    • Julie Svenningsen
      April 16, 2013 at 6:55 pm

      hi lynda! i also have tingling sensation in my fingers and feet, but it was never localized to just 2 FINGERS. sorry to hear about it but i think this you need to discuss further with your specialist.

      this is quite frustrating to admit but this tingling sensation in my fingers and feet that lead to numbness, is very ordinary in my daily life and i have learned to accept that it. i can’t bike for a long time as it doesn’t take long for my fingers to get numb. vaccuming floor is disgusting as well, my hands get numb in just few minutes. it is simply bothering me. i am sometimes bullied at work because everytime i try to stand after having a 15-min break, i walk like an old lady that can hardly step on the floor due to really painful tingling sensation in my feet.

  35. Mike
    March 11, 2013 at 5:24 pm

    It’s great that your count dropped so much.How long did it take to get so low? Regarding the numbness/tingling, I’m starting to notice a little more tingling too. I’m not sure if it’s from the hydrea or the ET. I’ve been on 1000 mg for over 6 months. Sorry, I know that’s not much help…

    • Lynda
      March 12, 2013 at 9:27 pm

      I’ve been on Hydrea since September 2012 at which time my count was over 900,000 and it’s now down to 575,000 so only about 5 months.

  36. March 24, 2013 at 8:13 am

    Hi everyone,
    Female 49 in Ireland ( from UK)
    Caucasian
    4 kids
    I have been diagnosed a few weeks ago. I also have osteo arthritis of my knees and depression. I was found to have have platelets on a routine blood test two yrs ago but the drs made me think it was due to me having a virus at time of testing so I didn’t get it re tested for another two yrs approx. I then got a phone call as my platelets had been high over two yrs.
    I was referred to a haematologist as I also had reduced b12 .
    I was neg for jak 2 test so needed a bone marrow biopsy.
    The bone marrow biopsy showed nothing else and so diagnosed with essential thrombocytosis.
    I am on aspirin nu seals 75 mg and I’m also on anti inflamatories for arthritis and cipramil for depression and pain killers for arthritis.
    Obviously when I’m 60 the meds change !
    My platelets started at 600 plus
    Went to 500 plus during tests
    When I went recently they were 460
    My question to everyone here ….. Do any of you wake up within clenched fists?
    Thank you

  37. March 24, 2013 at 9:04 am

    Do people get tired after big meals?? Is this a problem ?
    I also forgot to add I had per eclampsia when 28 and then son was born at 33 weeks as my waters just went… Ten yrs after my daughter was also born at 33 weeks … We thought due to group b strep now I wondering!!

  38. Lynne Price
    April 1, 2013 at 11:10 pm

    I also have ET was diagnosed in march 2013. I am currently taking hydrea 1000 mg my count was 800 and has vome down to 167 in one month. I feel this was very quick and makes me worry about my other blood counts. My heamotologist is not very informative and I barely have 5 minutes with him. Just blood test and thats it. I have lost a load of weight in a few month and muscle tone very bad. I slso take 40 mg of nexiam as I suffer with stomach ulcers. I wish I could get of them as they sre really bad to take long term . I am 55 years old and up to 6 months ago felt really healthy. I live in Durban southaafrica. I was slso advised by some one on my face book support group to try Interferon.

  39. Mike
    April 2, 2013 at 2:47 pm

    Hello Lynn, regarding your count dropping from 800 to 167 in one month…something doesn’t sound right. My doctor didn’t prescribe anything until my count was over one million. A normal platelet count is between 150 and 450. So getting down to 167 is good. It sounds like other issues are at work and for ET purposes there is no reason to take Interferon.. I think I would try to get a second opinion.

  40. claire
    April 13, 2013 at 6:37 pm

    Hi, im Claire, 34, northwest uk, white british

    Ive had ET 9 yrs now, i was diagnosed after fainting one night and after going to see the doctor who sent me for blood tests, after results came back i was sent to hem put on hydrea and booked in for a bone marrow biopsy, i was on hydrea up untill i got pregnant with my little one at which point i was put on inteferon straight away but my count went to millions and with not having much time to switch and change doses with being pregnant i was put back on hydrea for the rest of pregnancy, had to have a csection in the end and all went well thankfully!, think i was that caught up in the moment of seeing my baby i didnt give a 2nd thought or worry at the time to risks of surgery etc, i stayed on hydrea untill 2 yrs ago when i switched to anagrelide because i was worried about leukemic risks only to be told last yr by a locum hem that anagrelide has risksof MF transformation, so im now thknking of giving inteferon a gd go later this yr, but when your counts are in ‘normal’ ranges and a 2nd bone marrow biopsy last yr showed lower fibrosis than at diagnosis you think why mess about with meds but then you think and worry that the longer im on this drug am i ‘pushing my luck’!, anyways im glad i found this blog and others with ET as it does help to know you aint alone and its gd to be able to read others stories, to be able to help others if we can,
    Claire x

  41. claire
    April 13, 2013 at 6:58 pm

    Just a quick question, has anyone ever had any advice on long haul flights from your doctors/hems?, ive flown a few times since having ET but not long haul, my hem has said normal precautions like for everyone flight socks/plenty water/move about, said i wouldnt really be any greater risk than someone without ET, other peoples experiences/info would be appreciated, thanks
    Claire 34
    ET
    Anag/asprin

    • Darnel
      June 24, 2013 at 3:18 pm

      Hello Claire,
      I have travelled extensively between the US and South Africa and Israel – never had a problem. I tend to sleep on flights so each time I wake, I do the same exercises they recommend for all traveller’s to lower the risk of DVT. (you can do an internet search for the exercises).

  42. caroline hill
    April 15, 2013 at 7:37 am

    Hi I’m a 47 year old british women living in essex I was diagnosed with et 2 years by a routine blood test, after falling critically ill and suffering a stroke last year they decided to start treating my et and am currently on hydroxycarbamide with good effect although I’m not a lover of taking it, I also tried inteferon but could not cope with it. Nice to here from other sufferers makes you feel your not alone

    • Julie Svenningsen
      April 16, 2013 at 6:37 pm

      hi Caroline! i can fully understand why you don’t like interferon, well, i had my first shot last week and it’s damn making me feel totally handicapped. you mentioned HYDROXYCARBAMIDE – well, that’s the only thing I haven’t tried. will research on that as i am curious. it could be my other option as well. thanks for sharing. yes, you’re not alone fighting with ET. one thing for sure, one should not get complacent with having bloodtests and check-ups…. ET has long asymptomatic period and then boooooom, when you don’t take care, you’ll be in deep trouble. God bless!

  43. Rex Nemesis Rivero
    April 15, 2013 at 3:02 pm

    for the survey:

    Name: Rex Nemesis Rivero
    Country: Philippines
    Sex: Male
    Age: 23 (as of 2013)
    Ethnicity: Asian

  44. Julie Svenningsen
    April 16, 2013 at 5:15 am

    Hi there! thanks for sharing your experience. I can simply relate to all your pain and worries. I am 39 years old, asian, but now lives here in Denmark for the last 6 years. I was diagnosed with ET since 2008, just few months after I first gave birth to my eldest daughter. I have been to all sorts of medication like you did. First, I took HYDREA (hydroxyurea medac) for 2 successsive years when my blood platelates count sky-rocketted to 1.3M with consistent blood test every14 days and check-up with my blood specialist every month. Then, as expected, long-term usage of hydrea took its toll on me that I have to shift to Anagrelide for like 9 months and then I had this bouts of nausea & vomitting. I have to go back to my hydrea tx again and for like a year now, my specialist had me try Pegasys Interferon. I had my first shot last week, but I feel horrible. But, I have to give my body the chance to get use to the treatment as Hydrea has more deadly consequences then Pegasys. Since I was diagnosed to have ET from 2008, I always had consistent blood test every 14 days, sometimes every month when my platelets count is just around 400-500thou……. One question for you: did you have severe muscle pain and spasms on half of your body.I am having right side body pains right now I can hardly sleep.

  45. Julie Svenningsen
    April 16, 2013 at 6:12 am

    @CLAIRE: i come from the philippines and now lives in Denmark for the last 6 years. Recently, my mom got severely ill and i felt the urge to go home to ber with her. Am the youngest of 7 children, and my parents are obviously on their sunset years (both my mom and dad are 83). I called my specialist to make sure am ready for a tiring flight travel of approximately 17 hours flying time. My blood platelets level wasn’t that bad at all, 679,000 and still my blood specialist said it is not wise for me to fly. He added that if i’d take the risk, I just have to make sure I secured myself travel insurance that can finance me when something goes wrong. I MADE UP MY MIND AND STAYED WHERE I AM. I can’t be selfish you know, I still have 2 little girls that need me (5 yrs old & 3 yrs old). Last December 2011 me and my hubby and kids went to the Phils and fortunately I was given a go signal by my specialist as my blood platelets count was nearly normal, 405,000 …. but of course, i had to buy an expensive pair of flight socks to improve blood circulation during long hours of less mobility. Make sure you drink lots of fluids and when it’s not so turbulent, I advise you to get up and have a walk to improve circulation. luckily for me I have 2 little kids that needs to be changed every now and then. They themselves can’t be at one place, so I have to walk them around as they got totalky bored just watching movies…. i didn’t have any problem on my way to the philippines but on our way home here in Denmark I had severe migraine and dizziness and finally threw up when we arrived in Copenhagen….. i hope that gives you an idea, after all, the choice is still yours!

    • claire
      April 16, 2013 at 11:32 am

      Hi Julie, thanks for your reply, i wanted other peoples opinions as it seems all docs/hems have diff opinions and advice alot of the time when it comes to mpds/n’s , im all booked and paid for to travel to florida with my family and have paid an extra premium for myself with having ET, my little one is 4 so ill be up and down the plane with him im sure during the 9 hr flight, ill buy some flight socks, stay well hydrated and move about plenty, my bloods are all in normal ranges and have been stable for quite a while so think maybe thats why my doc werent too worried as long as i take precautions, but you do worry when you have young children, wanting to keep urself safe and well for them, thanks for sharing ur docs opinion with me, take care
      Claire 34 UK

  46. Julie Svenningsen
    April 16, 2013 at 12:29 pm

    Country: Denmark
    Female, 39 yrs old
    Asian (philippines)

  47. Julie Svenningsen
    April 16, 2013 at 12:40 pm

    Hi Claire! i think 679,000 isn’t really a scary number but I have been sick with all these side effects for the last 3 months… my dizziness is uncurable,,, done MRI and CT scanning and it’s all normal…. the docs blamed it all on hydrea- FAIR ENOUGH! i am not in good shape on the first place… happy trip and take care.. wish you fun fun fun and lots of fun and safe trip home….

  48. Julie Svenningsen
    April 16, 2013 at 7:00 pm

    hi everyone! am addressing this question to those who are suffering from tingling sensation and numbness in both fingers and feet….. Have you guys ever tried some feet/hands therapy to alleviate this condition? if yes, did it help? how often do you guys go to therapy? thanks… hope somebody will share me tips and advise about this as i need it badly.

    • Jenn
      September 5, 2013 at 2:08 am

      Hey Julie! When I first started Hydrea, I had those feelings. My GP sent me to see a neurologist and he ran a test on me. It all came back negative. I’m not sure how long I had the tingling/numbness but it went away on its own! Once in awhile if I’m feeling cold, usually one of my toes will go numb and turn white, but soon after I warm up, the color is back.

  49. nicky
    April 26, 2013 at 12:03 pm

    hi my name is nicky i am 46 years old my platlet count in jan 2013 was 18 million beforehand i kept getting a bit of burning in legs and feet blurry vision but nothing else.i am now on hydrxyurea and asprin platlet count now 5 but im slightly anaemic now but nothing at the moment to worry about. i think the tablets might of caused it i just hope the essential thrombocythemia is not turning into the myefibrosis disease.i am monitered every 6 weeks now as i have just started taki hydrxyurea ,this et really scares me sometimes but i try not to think about it to much but its hard xx

    • nicky
      April 26, 2013 at 12:20 pm

      I live in the uk nicky x

  50. Liz
    April 26, 2013 at 9:57 pm

    Hi Bryan, it’s really great to see that your ET is in remission from the interferon. I am 38, Filipino (Asian, yay!), and also was diagnosed with ET in Feb. 2010 when my platelets were over 1 MM. I am currently on just aspirin and iron – stopped hydroxyurea last Oct. because I wanted to prepare for pregnancy. My platelets are now 3 million, with no symptoms and never had any side effects on hydroxyurea. I didn’t like it because of its toxicity as a chemo agent. Because my platelets don’t stop going up, they want me to go on some medication, and I am considering interferon.

    My hematologist told me that some ET patients have gone into remission with Interferon, such as yourself. You have been in remission which is amazing. I’d like to know: Do you have the JAK2 mutation? I do not have the JAK2 mutation. Also, did you do the Interferon injections on yourself, or did you have to go the hospital? And how many times per week did you do it? I am concerned about the side effects. Any advice you can offer would be super appreciated. Thanks!

    • Jenn
      September 5, 2013 at 2:04 am

      Hey Liz, sorry to jump in but I’m looking for more information about women trying to get pregnant or who is already pregnant and have ET. I noticed that you said you are preparing to become pregnant. Have you had any luck and if you had, have you had any complications? The info I have seen are dated back many years and would like current info. I too one day would like to try to conceive, but the more I read the more it scares me.

      • Liz Alina
        November 12, 2013 at 2:45 am

        Hi Jenn,

        Sorry am just viewing your post now. So far I have not been pregnant again since miscarriage in Jan. 2012, have not tried. I am off all meds now including aspirin and iron. My platelets have gone down to 1.9 MM on their own.

        I decided not to do Pegasys Interferon against Dr. advice as I wanted to try being pregnant without drugs and did not want to feel ill from interferon… I have read many accounts of pregnant women with ET (from ET group on Facebook) having no complications and carrying to term about 50% of the time. It’s a crap shoot. Some have a terrible time with pregnancy. Fortunately I am without any symptoms at all. The concern with me is clotting but when you conceive, your platelets naturally go down. Probably best to see a maternal fetal medicine specialist. What are your counts and what complications do you have now?

  51. Paul
    April 29, 2013 at 9:02 am

    I have ET since 2010, last year ie.e 2013 in May, 2013, i discontinued the normal line of treatment and started with ayurveda when my count was around 450000 but as of today it is around 1051000, but still continuing ayurveda line of treatment, anyone know about any cure for this ET
    I have completely changed my diet and now pureley on less oil and less protein diet.
    I do not know how I got it but just wondering was it due to change in DNA in my body due to excessive drinking of Coca Cola and other areated drinks. We need to find out what we had for the past 10-15 years, is it due to heavy drinking of coke, etc., need to find out.

  52. Paul
    April 29, 2013 at 9:40 am

    I would also like to point out one thing i have noticed that when i had malaria in 2006, my platelets came down to normal i.e. 275000 something from 670000 something

    • bushbunny
      June 8, 2014 at 3:13 am

      That is interesting Paul. In ancient Rome one of the kill or live cures for tertiary syphilis was to get Malaria. The high temps involved killed off the bacterium. Just recently the Mayo clinic injected a woman with measles. She ran a high temperature for a day and had a bad headache, the next day she was cured, for how long we don’t know. But another patient treated the same way had already had measles and it didn’t work on him.

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  55. May 23, 2013 at 10:13 am

    Hi,
    I have been diagnosed with ET in 2011, dont know whether it is primary or secondary, was taking hydroxurea till May, 2012 since then discontinued and went for alternative treatment Ayurveda, when I discontinued it was around 540000 but since then when upto a maximum of 1051000 but has been in the range of 1000000 to 1051000 for the past 4 months and only recently it went down to 964000, my blog https://cureforet.wordpress.com has the complete details and will be further updating..

  56. Bernadette Mooney
    June 4, 2013 at 11:15 am

    I also suffer from the same condition was diagnosed two year ago , I take hydroxycarbimied four days at one and three on the other three , I’m also prescribed aspirin daily , since being prescribed these treatment thankfully most months my platlet levels r normal but on the occasion it can b slightly high again .

  57. Donna Bartell
    June 12, 2013 at 11:16 pm

    I, too, have been diagnosed with ET and my platelets reached 1.675 today so I just started Hydroxy 500 mg. I have been dieting and have lost 50 lbs this past year and with the dieting my normally very thick hair has been thinning, so now I am very concerned about this drug and what it will do to my body. Have read the comments and found them helpful. Would appreciate more encouragement as to how to live with this. Thanks for all the support.

  58. Darnel
    June 24, 2013 at 3:08 pm

    Hello,
    I am going to be 50 in a couple of days, and I was diagnosed with ET days before my 34th birthday. At diagnosis, my platelet count was 2 million and I was prescribed Agrylin. I am still taking Agrylin and baby aspirin – 16 years later. I have had a couple of events that were diagnosed as “minor strokes” or TIA’s. I had a short stint on Hydroxyurea – I did not want to switch but my doctor felt that my platelets at about 850,000 at the time, was too high and wanted to try the Hydroxyurea. After about a week, I developed a rash on my abdomen – and (happily) discontinued the Hydroxyurea.
    I exercise (not as often as I could), and I try to follow a healthy diet. I try to reduce stress by walking or practicing yoga. I feel perfectly fine and live a normal life – my platelet counts are usually between 575,000 and 780,000.

    • claire
      June 27, 2013 at 8:53 pm

      Hi Darnel, i also take agrylin, was just wondering if you get the racing heart beat?, thanks, Claire

      • Darnel
        June 28, 2013 at 1:37 pm

        Hello Claire,
        Yes, I do. Many years ago, I was prescribed a daily dose of Atenolol to help with the racing heart and shortness of breath. I have since reduced my dose of Agrylin, and I now take Propanolol only as needed. I am very aware of how nutty this sounds…… but have noticed that if I take my Agrylin and I eat a large breakfast of eggs, bacon,etc., I will have severe palpitations and shortness of breath. If I have cereal – I don’t feel it. I also cannot take it right before bed time because lying still makes me more aware of the pounding and I can’t fall asleep.
        I read above that you were on hydrea – I tried that – I just did not like being on it. It did not make any difference to my platelet count.

      • claire
        June 28, 2013 at 10:42 pm

        Hi again Darnel, i found with the hydrea it messed about with my other counts too, where Agrylin tends to just be effecting platelets, my count is normally around 270/280 give or take, i have my own weird thinking of taking my meds …. i take 3 capsules a day (used to be 4), i split them in 2 doses, i prefer to take them towards the end of the day so some around tea time then the 2nd dose b4 bed bcoz in my mind i think that while im on the go all day my hearts beating faster than at rest so wouldnt like to take my meds and have my heart going way faster again, so i take mine when my day is slowing down, feel im trying to be kinder to my heart :-) , think we all have our own little ways, do you mind me asking if you have any concerns of long term use of agrylin?, and have u had 1 ormore bmbs since diagnosis?, thanks, Claire

  59. Darnel
    July 1, 2013 at 11:45 pm

    Hello Claire,
    I do have concerns about long term use, but I still feel better about taking Agrylin long term than i would if i were taking Hydroxyurea. I had a second bmb about six years ago, and the results were good. When you say 3 capsules a day….. are you taking 3 x 1mg or 3 x 0.5mg capsules?

    • claire
      July 6, 2013 at 10:25 pm

      Hi Darnel, im taking 3, 0.5 caps a day, i just keep reading that with this med the risks are higher for risks if MF, thats what worries me, problem is none of the meds for our mpds are great and come without risks i suppose :-( , hope your well, Claire

  60. July 20, 2013 at 8:37 pm

    Hi,

    I was diagnosed with ETin January 2013. I take Hydrea 500 and Asprin 75 mg.
    Recently we found that my leg fingers were becoming blush so got a APPG test done and I found that the blood circulation in 5 leg fingers(Both legs) has reduced. Doctor have asked me to stop taking Asprin and started Clopivas AP 75 and Dilzem 30. I donno what to do, it is getting tougher the day goes by. I experienced hairfall when i started taking Hydrea but now it is normal but this whole thing still concerns me. My life has changed drastically, it just changed me a lot. I keep reading articles on this but this is one good blog where i can share as well as read all the experiences. I hope the find the cure for this ASAP. Anyone who experienced the fingers getting blue/black? Let me know what did you do get it normal.

    I am Nikhil/India/24

    Thanks a ton in advance!!!!!
    Hoping to here from you soon and Brayn you did a great job starting this. I was thinking of starting 1 of my own but found this.

  61. Betsy
    August 7, 2013 at 4:33 pm

    Hi, I was diagnosed with ET last year after my Primary Care doctor found the elevated platelet count. It was strange to see a Hematologist in a Cancer treatment place, since I’m extremely healthy and athletic. I usually comment that I must be the healthiest person visiting the place!
    The usual treatment with baby aspirin will not work for me, since I have had bouts of ulcerative colitis since 1993, and sure enough, trying the aspirin last year in the spring set off a flare-up. In May I started on 500mg of HYDREA…and I have had 3 colds since then…two back to back in the past 3 weeks. I’m hoping that this will not become the usual deal for me. I’ve now read that UC (ulcerative colitis) and ET may sometimes go together. The good news is I’ve been flare-up free from the UC for nearly a year now…but this sore throat into sniffles stuff has got to go!

    Country: United States
    Sex: Female
    Age: 56 (55 at diagnosis)
    Ethnicity: Caucasian

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  63. Lynda
    August 19, 2013 at 7:23 pm

    I have been on Hydroxyurea for almost a year now and as I was reading these posts I noticed many of you have posted that you started on Hydroxy but then switched to something else.

    Why the switch? Were your other counts being affected? Were you having bad symptoms? My doctor told me I’d probably be on Hydroxy the rest of my life but when I see many of you saying you had to switch to something else, I’m just curious why you had to do that.

    • Jenn
      September 5, 2013 at 1:52 am

      I was on Hydrea for 5 years. One of the side effects was that people of color – it would make our fingers and toes darker and look deformed (according to my Hematologist, but the oncologist has never heard of it doing that). Sounds bad and nasty huh?? Now I’m on Agrylin. If the Hydrea didn’t do that to my extremities, I would still be on Hydrea. HTH

  64. Darnel
    August 19, 2013 at 7:38 pm

    Hello Lynda,
    I started on Agrylin, and felt fine (normal side effects which were tolerable). My counts were then on the high side for a while, and my doctor wanted me to switch. I did not want to switch, did not like the idea of being on a “chemo” drug. After taking it for a week or so, I developed a rash and stopped taking it.

    • Lynda
      October 15, 2013 at 9:02 pm

      Darnel,

      I too am having to wrap my head around taking a “chemo” pill the rest of my life. The hydrea is working though, I recently saw the hematologist and my count was down to 375,000 from a high of 1.4 million last September. I’ve recently noticed my hair is falling out which is not that common with hydrea and I too developed a wierd rash on my eyelids but my white and red blood cells counts are holding so that is a good thing. I guess for now I’ll just stick with the hydrea but it just seems a lot of people posting on here are using other treatments so thought I’d ask about it.

  65. Cecil Ngwenyama
    August 23, 2013 at 2:33 pm

    I am suffering thrombocytosis I do not know where to get help, I’m @ Pretoria

  66. Mike
    September 5, 2013 at 2:12 pm

    I’ve been on Hydrea for over two years…I really haven’t noticed any side effects. My oncologist prefers Hydrea over Agrylin because it is not as hard on the liver.

  67. Nyree
    November 11, 2013 at 7:34 pm

    Hi All
    Nyree from New Zealand here (42 year). Heading today to get my results form my bone marrow aspiration and been reading heaps about ET that was picked up during bloods before a hip replacement 9 weeks ago. Not sure how I m feeling but thanks for the support you have given me form your stories.

  68. Kiki
    November 12, 2013 at 12:53 am

    I was diagnosed with primary essential thrombocytosis about 18 months ago and also tested positive for the JAK-2 mutation, polycythemia vera as well. I am on Hydrea with no real side effects. I am 52, white female. My only complaint is that I have horrible itching after showering and also shortly after waking in the morning. Has anyone had these symptoms? My doctor said the Hydrea would help that and it did for a while but now it is getting bad again.

  69. Nyree
    November 12, 2013 at 7:41 am

    Results positive so the journey begin. On Aspirin to start with as levels are high, but at the lower end, just a wait and see ;-)

  70. Mark
    November 26, 2013 at 2:44 am

    Hi everyone,

    My name is Mark 36 years old from Australia and was diagnosed with ET in 1999. Up until 12 months ago I had been treated with Interferon and had never had any problems apart from the odd bout of tiredness. When I was diagnosed my platelet count was up close to 2million and while medicated it had come down over the years to about 250,000 so things were great.

    They have taken me off the interferon due to an abnormal liver function test but it doesn’t seem to have been bad enough for them to follow up on as the tests had been like that for about 2 years now and since being removed from interferon there has been no change in LFT but my platelets have gone back up to 700,000

    They now want to put me on Hydrea but I am rather hesitant as my wife and I are about to start trying for our second child and reading through all the side effects it definitely doesn’t fill me full of confidence especially for the long term.

    Feeling a bit down at the moment so any feedback would be great.

    Thanks

    • Jennie
      November 28, 2013 at 3:47 am

      Hello, if you’re on Facebook you should join MPN interferon, MPD-Myeloproliferative Disorders and MPD Myeloproliferative disease support. The forums have been very informative.

  71. Tim
    November 26, 2013 at 2:55 am

    Hi Mark,

    I am 39 and from NZ. I was diagnosed when I was 33 with platelets at 1.2 million. I have been on Hydrea ever since. We were pregnant with our second child at the time of diagnosis. We have since gone on to have our third child. I came off Hydrea for 3 months to conceive but my platelets went back up to 1.3 million. In the meantime we banked some sperm. After some toing and froing my doctors decided there was no risk in conceiving while I was taking Hydrea, so I went back on it. A month later we were pregnant. Our little boy was born healthy and is now 2 years old, and I am back on Hyrdrea.

    We will probably used the banked sperm if my wife tells me we are having a fourth child…

    The only side effect I have had is the odd strange, localised, headache, but they became less and less as my body adjusted to the drugs. My platlets sit at around 600,000. I get a bit tired in the evenings but I do have three young kids, so I am not sure I can blame that on the drugs!

    I wish you well.

    Tim

  72. December 10, 2013 at 3:00 pm

    Dear Bryan Tan,
    I am Esther Tan from USJ Subang Jaya, Selangor Malaysia. Finally someone with ET from Malaysia. My email is esther@creativerobotics.com.my. Please email me your contact and I would like to phone you and chat about our disease. You mention your haematologist and I would like to know whom you are seeing. Thanks. Waiting for your email.

  73. Mike
    January 7, 2014 at 10:35 pm

    HI Paige,

    Since your doctor has not put you on hydrea, I thought you might appreciate hearing my doctors goals with respect to my case. I am on hydrea and my counts have been hovering between 700 and 850. I was under the impression that the goal was to get my count into the normal range of 150 to 400 but my doctor said no, her goal is to keep the count below a million. As I recall I did not start taking hydrea until my count cleared a million. So your doctor’s approach is consistent with my doctor’s approach.

    Mike

  74. JC
    March 5, 2014 at 3:51 pm

    went to dr yesterday count is down to 900,000 from 1,350. increased hydrea, this is my first day with increase………….. oh I feel so tired. I think the meds make me feel worse than the illness……………….

  75. JC
    March 5, 2014 at 3:55 pm

    diagnosed in November 2013 when changing physicians and she did a CBC. Dr said I will be on meds for the rest of my life that this is not a curable illness just able to control with meds. wondering if I should go to Mayo Clinic for 2nd opinion? any suggestions out there. Age 59/F

  76. Rachel
    March 6, 2014 at 4:21 pm

    Hi Bryan, Glad to find your blog!

    My husband is the ET patient – diagnosed in 2008 at age 29, but just now being considered for medication as his platelet counts have jumped way up. The initial diagnosis we pretty much brushed off since he wasn’t symptomatic and required no treatment. He was also diagnosed with Type 1 diabetes a few months after turning 30 so that’s always been our focus! Now we’re coping with the true nature of ET and the idea of lifelong chemotherapy treatment. To be honest, it’s scary. We’re waiting on a second appointment with the hematologist/oncologist to see if the high reading was a fluke, or if his platelet numbers continue to be high or increasing. If that’s the case, I think we’ll seek some more specialized treatment at a center like John Hopkins. His main symptoms are migraines and pain in his hands. Despite being saddled with ET and T1, he does his best to live a healthy lifestyle, keeps positive, and is loving life as a father to our 2 year old son!

    Curious whether there are any others out there with T1 also, and whether there are any additive/cumulative effects when it comes to complications.

    Country: USA
    Sex: Male
    Age: 29 at diagnosis
    Ethnicity: Caucasian

  77. Bill klementzos
    March 21, 2014 at 2:02 am

    My husband Bill has recently been diagnosed with et after having a heart attack 6 months ago. The heart attack was a complete shock to us because He is a 42year old non smoker, no family history of heart disease, healthy man. We live in upstate N.Y. and I have been online as much as possible trying to get knowledge about this condition. He tested negative for JAK and on 1.5mg of anagrelide a day. His count is over 1 million and we are very hopeful that this medicine will lower it. We live in upstate N.Y. Any information or ideas are much appreciated. Thank you Courtney

  78. Darnel
    March 25, 2014 at 5:01 pm

    Hello Courtney,
    I was diagnosed when I was in my early 30’s. It has been 17 years, and I have been on anagrelide since diagnosis. As mentioned in the conversation above, I was on Hydroxyurea for a very short period of time. As you can see from the comments above, other people prefer to be on Hydroxyurea. Not sure that I have any information/ideas for you, but let me know if you have any questions, I can try to help. Wishing you well.

  79. Darnel
    March 25, 2014 at 5:01 pm

    Is anybody here being treated at Mayo Clinic?

  80. Judy Rodriguez
    March 29, 2014 at 1:36 am

    Hi my name is judy amd i to have high platelets and take the same medcation i been and this pill for 5years ….i wish i could take something. Else .

  81. ema
    March 30, 2014 at 5:36 pm

    Hello everyone ,
    lm Ema , 26 yrs .
    Irich female , but I leave in Ttipoli Libya .
    was diagnosed 3 years back .
    I was taking aspirine but unfortunately had a bad hemorrgic vomiting , had 5 units of blood trasfusion spent days in the ICU , I was shocked my blood pressure droped as well my pulse , thank good im still alive .
    I naad to seek a hematologist in Ireland or UK , I need massive treatment , but the problem is that I’ve been in Libya since 1994 ( studying medicine ) , so I need to do a personal security No. as I carry an Irich passport only .
    l want to get the benefits of the medical cards , I need someone for help & advice.
    Im happy to find who can share my pain …
    Thanks Bryan you are so creative ^^ .
    Ema

  82. jade
    April 22, 2014 at 10:04 am

    Hi I found out I had thrombocytosis with my first child she is now 11. After having her I went back ant my regular level was between 6-800. With exercise I got it back down to around 450. With my second it was high again high enough that I couldn’t give birth in birth unit had to do it in hospital and they put me on aspirin.6 years later and I’m trying for a 3rd but have had 2 miscarriage in as many months. Knowing it’s my blood that is causing this is hard but I suppose I just need to exercise more and go back on the asprin to keep them down. When I was first diagnosed I thought I must have cancer but this is not the case and you can have children you just need to work a little harder. I’m Caucasian now 30yrs of age and live in Australia. Also not smoking lowers the platlet count

    • Jennie
      April 22, 2014 at 8:41 pm

      Jade, what kind of complications did you have while giving birth? I’m weighing my options on weather I should try to conceive or not. They only put you on aspirin nothing else? Are you taking anything for the ET?

      • Lori
        May 27, 2014 at 11:25 pm

        Regarding pregnancy, I was diagnosed with ET before we had kids. My platelettes run between 400-700. The only drug I have ever taken us a baby aspirin daily. I have two healthy children and took aspirin through both pregnancies. Doctors will ask you to stop taking aspirin in the weeks leading up to delivery. The awesome thing is that your platelettes will drop during pregnancy. My doctor described it like watering down the kook aid because you retain water while pregnant. After pregnancy my numbers returned to being high.

      • Jennie
        May 28, 2014 at 2:56 am

        Thanks Lori! Counts are down to 246! My hemo put me on interferon while I’m trying to conceive. I wish it was just aspirin only. It’s nice to hear both pregnancies went well!

  83. April 23, 2014 at 4:46 pm

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  84. bushbunny
    April 28, 2014 at 6:14 am

    Hi, I was getting non headache migraine, terrible pains in feet and legs, and put on Vit D3 that reversed these symptoms, but further blood tests showed my platelets were 900 plus.
    I am borderline diabetic take medication and 6 panadol osteo a day, 2 caps of Vit.3 and take asprin, and medication and heart aCE’s but saw a Haematologist, and he prescribed Hydrea capsules. I feel depressed and without much, but someone told me this was normal, even though I take a mild anti-depressive tablet Extine, no initiative to go out but – I have my first blood tests results this Friday from a specialist. I am also JAK 2 mutant positive and my Mum died of AML but she was 91. How long will these side effects last?

    Patricia, Armidale NSW, Female 71.

  85. bushbunny
    April 28, 2014 at 6:24 am

    I just feel I can not cope as well as I did. But one day I had flu like symptoms, now I do suffer from rhinitis and sometimes get a mild asthma type tickerly cough. But I rang a friend who is a medical person and she said leave off Hydrea for one night. I took an Avil and the symptoms disappeared. What annoyed me the doctor I saw gave me a piece of paper with rough instructions on it, although the pharmacist did give me a hand out on Hydrea, and he is not contactable.

    • Liz
      April 28, 2014 at 9:59 pm

      It’s good to have found this blog! I was diagnosed with 1.7million platelet count last year. I stopped taking meds for a while thinking I was well enough until 2 weeks ago, I had a rebound with 1.8 million. I’m now continuing medications with Anagrelide and Hydroxyurea.

      I’m from the Philippines.

      I’m also a part of a support group for ET patients on Facebook. https://m.facebook.com/groups/456028451193700?ref=bookmark

  86. bushbunny
    April 29, 2014 at 1:37 am

    Hi Liz and all, there was something about the altitude one lives in, for example, I live 3,500 ft above sea level in a temperate region of the Northern Tablelands of NSW. One report said often when I person moves to sea level, the platelets return to normal. Anyone here live in a high altitude?

    Keep well
    Patricia

  87. liz_palli@hotmail.com
    April 29, 2014 at 9:46 am

    I just got back from my doctor and from ET, now my disease is PV. Apparently, my hematocrit and rbc levels are sightly higher. Might only be because of dehydration.. who knows? My doctor said it didn;t progress, it’s just how MPD’s are. Good news though, from 1.8 million platelets, it’s down to 800k. And I havent felt the usual symptoms since I resumed my medication. I do hope I recover quickly.

  88. bushbunny
    April 30, 2014 at 3:14 am

    Hi Liz and all, Has anyone here had a bone marrow test. Would not that show what is causing the problem with platelets, some damage or whatever. Platelets only last in the blood for 5 – 9 days before they are replaced. Mine were 950 instead of 450 or lower. Anyway will see a specialist on Friday who ordered more blood tests too. The haematologist I won’t see until June after another 2 blood tests.

  89. Colleen Waytowich
    May 2, 2014 at 4:57 am

    I was diagnosed 4 months ago after the genetic testing came back positive with the Jak2 gene mutation. I have passed on all treatment aside from low dose aspirin and my platelets went from 1000 to 800 on their own. I am continuing to pass on hydroxeurea as long as I can. I am a 30 year old female.I have had no symptoms of ET proper but many symptoms of what they aren’t sure of otherwise. Ex. Shortness of breath, chest pain, gastrointestinal issues, joint pain, fatigue. If you want to chat, drop me a line. Coliflower24@gmail.com

  90. bushbunny
    May 2, 2014 at 7:53 am

    Hi colleen, well folks I went to visit another doctor who treated me in hospital, he is Dean of the Medical school of our university. I was given my blood tests that were taken on fasting with the test from the Haematologist. I told him that I had symptoms of ET before I was put on Hydrea, and given Vit D3, the problems cleared up in weeks. Then a month ago this visiting Haematologist (who I thought was a bit gung ho, personally) put me Hydrea, without any instructions other than if I felt off like flu symptoms to stop them? And if I had mental confusion (that I have complained about since). But I couldn’t contact him. My platelets are down to 613. This specialist physician told me he would try and contact the doctor, but maybe my dose should be reduced. I can’t they are complete capsules. My diabetes was 5.7 AC1 test, and cholestral 3.9. He said I could have a bone marrow test, at least to put my mind at rest, and living in an elevated altitude does increase platelets, we are colder here and our blood thickens, and if we go down to sea level then they will come down again. I am positive for Jak 2 mutant. But he felt alternative treatment can be given as an alternative to Hydrea. Maybe Medicare will pay for four weeks at the sea side to prove that altitude does affect platelets, LOL. I wonder if a study has been already done on this?

  91. Sophie
    May 2, 2014 at 9:57 am

    I was 36 when I had the diagnosis a year ago (JAK 2 mutation). Im a female, caucasian and from Denmark.

  92. bushbunny
    May 3, 2014 at 1:12 am

    Sophie, welcome, I hope you are feeling OK. I’m 71 and my mother died of AML, but she was 91. Have they given you any other blood tests?

    • Sophie
      June 8, 2014 at 7:23 pm

      Sorry for late reply. Yes, I had a battery of tests performed. Went to my haematologist every 3 months but now only every 6 months. My platelets are always lower than 600, lukily. Im talking an aspirin Daily.I try to live a healthy life with Daily exercise (I have a dog that needs his 3 Daily walks;-), healthy food and then I try not to stress too much. The latter is the biggest issue. Im a phd student with only two left to finish my thesis. Im working quite hard and Im stressing to meet the deadline. Its difficult to explain when u dont know all the details but in short Im delayed with a few months due to reasons which is out of my hands and my scholarship is running out in two months. Ill be struggling to finish my thesis (and a load of other work) being pressed to work more and then Im out of a job in two months. Ill probably only get a few days of summerholiday in order to minimize the delay. On top Ill be without a patcheck for 2-3 months depending on the extent of the delay. And then Ill have to find a new job after handling in my thesis. Hopefully I will not have to great difficulties finding one. Im struggling with fatigue (which is actually the reason why I was diagnosed with ET) and at times I find it difficult to concentrate. It really does not go Well with a busy career. I had a wake up Call a month or so ago. I was trying to ask my boyfriend to Pick up a basket but wasnt able to find the word “basket” in my vocabulary. The nearest word that came to mind was “box”. This has happened ever so often since. Likely due to stress. It scares me. Why would I do this to my body especially when Im sufflering from ET? I try to cut down on social activities as I need to relax when Im not at work. I know that I have to manage my stress but its difficult. If I Cut down on work, the delay worsen and that also stresses me due to financial worries. Its kind of a viscious circle. Im often thinking about quitting and get a job instead although from an academic perspective that would be considered as completely darft so close to goal.

      • bushbunny
        June 9, 2014 at 2:30 am

        Don’t worry about the brain fog, it happens all the time to me. Congrats about the Ph.D, what are you writing about. I honestly think that they could put your Ph.D on hold once the scholarship runs out. Or maybe you could get another sponsor whom has some sympathy for your condition. Where do you live? If you get that problem out the way after all a Ph.D is some target to strive for, you will and can precede at your leisure. I am doing my last Horticulture cert on bonsai. This completes everything now in the Agriculture, and horticulture certificates. I have a BA and GCA from UNE, but I didn’t enjoy the studies for GCA on line. Prefer face to face. But I passed.

  93. Jennie
    May 3, 2014 at 3:37 am

    Hi all! I was wondering if any of you ladies has been recently pregnant or are pregnant now? I’m curious as to what medical regimen you have been/are on.

    • Rebecka
      July 18, 2014 at 9:55 pm

      Trying to get pregnant. If I succeed I’ll stay on aspirin during the first six months, (which I’m already on) and Pegasys during the whole pregnancy. I’m already on Pegasys as well, as it may take up to 6 months before it has reached full effect.

    • Beth Thomas
      October 26, 2014 at 7:37 am

      Hi Jenny,

      I have had two children while on treatment for ET. With my first baby – when I told my haematologist we wanted to conceive he took me off Hydroxycarbomide (which is my usual medication) and I started on the Interferon injections – I also kept taking 75mg aspirin throughout the pregnancy – my haematologist saw me every 4 weeks throughout pregnancy & I also had regular 4 week scans after 20 weeks scan so that obstetric consultant could keep an eye on growth of baby – everything went fine – had to be induced as baby was too comfy & wasn’t budging – and I had a healthy baby girl 7lb 11oz born 2 weeks late! After I had my daughter I was put on warfarin for 4 weeks & did tanziparin injections to stop any clotting. After that I went back onto Hydroxycarbomide.
      With my second child – the same thing happened again – came off Hydroxycarbomide & went onto interferon injections before we conceived & stayed on this & aspirin throughout pregnancy – again was checked on regularly throughout pregnancy. One of the reasons they give you regular growth scans for baby is because aspirin can sometimes slow down the growth of the baby – but my baby was growing bigger than average! My platelets also kept increasing even though I was on maximum dose of interferon – it wasn’t majorly high – but they didn’t want it to keep increasing so they decided to induce me at 38 weeks & I had a very healthy baby boy born 2 weeks early weighing 7lbs 10 – they put me straight back onto Hydroxycarbomide the day after I had him & this time I didn’t take warfarin – just the tanziparin for 10 days.
      Hope this helps!
      Beth

      • Jennie
        October 27, 2014 at 2:02 am

        Hi ladies! Thanks for your reply. I am almost 3 months. My hemo put me on interferon before conceiving. So far so good. Platelets are under 300. I have heard so many pregnant ladies getting on warfarin, but my doctor doesn’t see the need for it. I hope he’s right!

        Rebecka, are you taking any prenatal vitamins? I did that before conceiving. I think with the help of interferon and the vitamins, it helped me conceive faster.

  94. bushbunny
    May 3, 2014 at 5:30 am

    Sorry Jenny, I’m 71. But I noted some with ET were considering having children? Best of luck.

  95. Simon
    May 4, 2014 at 8:55 pm

    Hi Everyone,
    I’m Simon, from Auckland, New Zealand – 35, Male, and fit and healthy, or at least I thought I was.
    I’ve be told I have ET, high 500 platelet count and Jak2 Positive. I have had constant nose bleeds, chest pain and now numbness in my legs when sitting.
    I had a bone marrow biopsy 4 days ago, and waiting to hear about that. That was sore.
    Nearly 4 years ago I had cerebral venous thrombosis – blood clots in my brain after a running race. I had 4 TIA stokes over a period of a week, and drove myself to hospital. That was a tough period dealing with the pain, healing and family worries. I’ve never been the same athlete since, but I’m not too bad in general day to day stuff.
    This new diagnosis sounds like it may be the under lying cause of my previous clots.
    I was on Heparin, then Warfran, then Clopidgrel, now aspirn. When I fly I have to inject myself with Clexane.
    I’m finding everything quite hard at the moment, after being told I have ET, but my family and especially my partner is finding it very challenging already. We are due to get married next year.
    I hope with ET I can still get on and have a nice rest of my life with Chantelle my partner.
    Nice to read everyone’s contributions and supporting each other.
    Thanks

    • Tim
      May 6, 2014 at 5:26 am

      Simon, I was diagnosed in Auckland (now living in Hawkes Bay) around 5.5 years ago when I was 34. I’ve since had two more little boys (in addition to the one I already had) and have no major issues. I am JAK2 negative but had a platelet count of 1.3 million. I was diagnosed after having sore eyes and headaches.

      I try and stay fit and carry on with life – but found the first 3-6 months the hardest, adjusting to the diagnosis.

      The care in NZ seems to be pretty good, if not a little conservative.

      Tim

    • sonya
      June 28, 2014 at 2:58 pm

      Hi Simon, I was diagnosed in march 2013 when my platelets were at 730. I’m jak2 negative. I had TIA and also the bone marrow biopsy which i thought was the most weird experience I ever had and would do it again if need to. My platelet count is now at 1645 and only on aspirin. I do have start taking one of three choices i have. So being at 500 should be ok, hope you are feeling better :)

  96. bushbunny
    May 4, 2014 at 11:45 pm

    Hi Simon, welcolme, you’ve been through the mill, eh. 500 platelets isn’t that high. But the bone marrow biopsy, may unveil some underlying problem. I suffered before being on Hydrea, pains in my legs and feet, burning and painful, migraine but no headache, and aching back etc. I was found to be 75% deficient in Vit.D.3, took them and whoa within a few weeks they disappeared. I felt like a new woman again. But a blood test showed 900
    platelets. So tests for heart problems, I was better than some youngsters. But what pleased me was I felt very well for my age (71) now after a few weeks on Hydrea (that I do not like) my blood platelets are down to 600. What elevation do you live in? NZ is fairly mountainous. They say that people who live in high altitudes tend to have higher than
    average platelets, and if they return to sea level, they return to normal. ie.150 – 450 platelets. Keep in touch and let us know what you bone marrow biopsy shows. I want one too, rather than take Hydrea for the rest of my life. I’m JAK 2 positive too. And my mum died of Acute myloblastic leukaemia, but she was 91! Keep well and best wishes
    Patricia from Armidale NSW.

  97. Mike
    May 5, 2014 at 2:13 pm

    Simon, I what to reinforce Bush Bunny’s comments. A platelet count of 500 is barely above normal. My general practitioner did not refer me to a hematologist until I cleared 700 and the hematologist did not put me on any medication until my platelet count was over a million, so it looks like there are other factors at work. Just my two cents….

    Mike in Oregon

  98. bushbunny
    May 6, 2014 at 4:55 am

    Mike when I saw the head of the medical school at our UNE, he told me that 600 was not a big deal and over a million is. He was to contact the haematologist and tell him were the side effects I was suffering worth taking hydrea, when there were alternative treatments available. Believe it or not just seeing him or something else, I feel bucked up the last few days. Maybe my system is settling in to the new Hydrea. Thanks for commenting. I swear by Vit D3, or Ostelin.

  99. bushbunny
    May 6, 2014 at 4:57 am

    I may be wrong of course, but do we NZealanders and Australians get better and cheaper NHS deals. Whereas in America they pay more, I am not sure, with this Obamacare deal, is it going through?

  100. May 8, 2014 at 3:02 am

    Hope you are doing well Bryan,

    I’m glad I found this page. Someone so very dear to me has ET and is taking Hydrea 500mg every other day. My biggest fear is stroke due to the severity of headaches that has worsen since being on Hydrea. with a platelet count over 600. I think the dose is either too high or not the right treatment, period!
    any advice?

    Thanks Clarissa

    Please email me at Dishwithclarissa@gmail.com

    • May 12, 2014 at 11:38 am

      Hi Clarissa, headaches seem part of the deal, Hydration is key. Get your friend to drink plenty of water, I’m no doctor but it works for me! :-)

    • bushbunny
      June 6, 2014 at 12:23 am

      I know it is very confusing and upsetting when there are no obvious signs of illness. Only a doctor can answer you question. Has he had a bone marrow biopsy. Is he overweight and diabetic too?

  101. bushbunny
    May 8, 2014 at 3:20 am

    If you read the pamphlet about Hydrea, it says that it is also used to fight cancer, sickle cell anaema, and HIV? But it starts to attack cancer cells within 24 hours. Something as powerful as this must disturb the system. It lowers platelets too. But I was told it might increase the size of red blood cells. Dish with Clarissa, we can’t give advice on medication as we are not doctors but if you are worried see your doctor again. He/She was the source of prescribing the drug.

  102. May 12, 2014 at 11:19 am

    Hi I’m Steve Rupp, Male, Aged 56, Had ET diagnosed for 3 years.Hydroxycarbamide 3x 500mg per day + 75 mg aspirin per day. Get a bit sweaty and tired, Working, Swimming Gym Cycle drinking loadsa water, enjoying life. See by Haemo every 8 weeks. Good times!

  103. bushbunny
    May 12, 2014 at 11:51 am

    One of the drugs you must not take when on Hydrea is any other blood thinner. They clash. There is plenty of info on the web about side effects, and if on Non insulin diabetes medication try to lose weight I did and my BSLs and aCI test are now below 6.

  104. Tara
    May 14, 2014 at 6:36 pm

    I am a 43 year old African American female from the U.S. just recently diagnosed with ET JAK2 negative. Platelets have been high for approximately 3 years been seeing Hematologist for just about the same. Blood work a couple of weeks ago showed platelets at 698, highest they’ve been so far, started out at 530 in the beginning. No treatment so far, just watch and see. Symptoms are pain in legs, headaches, itching, and horrible night sweats. Pain in legs can also be attributed to Trochanteric Bursitis in hips. Confused, so much I don’t know. Is this cancer, I’ve been told yes and no?

    • bushbunny
      May 15, 2014 at 4:18 am

      Hi Tara, some of those so called symptoms can be related to menopause coming on. Trust your doctor but early high platelets with or without JAK 2 mutant positive, can indicate that you are vulnerable to other blood disorders? As you are African American, is there sickle anaema in your family? I think you would know by now if it is. Try taking Vit D3 Ostelin, it cured my pain in the legs and non headache migraine, auras. Won’t overdose your system.
      Darker skinned people tend to be low in Vit D. But Vit D 3, strengthens bones and muscles and prevents to a degree osteoarthritis in women particularly.

  105. Mike
    May 14, 2014 at 6:46 pm

    Tara, I asked my Hematologist why ET is not cancer, the question really surprised her. But her response was that it’s just not cancer. I guess the key is that cancers can spread to other parts of the body and ET doesn’t. ET just means you have too many platelets and the big concern is that the platelets will clot and cause a stroke. 698 is high but not that high. My hematologist didn’t put me on medication until I cleared 1000. She also said she had seen patients who were over 2000 and who were doing fine. She felt they needed to lower their count but the point is that it’s not the end of the world if you have a high platelet count.

    Mike

    • May 14, 2014 at 11:07 pm

      Thanks for the reply Mike. Reading some of the stories on this site of people with platelet counts much higher than mine living normal lives is reassuring.

      • May 15, 2014 at 1:48 am

        Thanks for the reply Mike. Reading some of the stories on this site of people with platelet counts much higher than mine living normal lives is reassuring. Is there anyone out there who is JAK2 negative? Does it make a difference as far as the diseases effects?

      • bushbunny
        May 15, 2014 at 4:26 am

        Hi ttdanls, I was 900 platelets after one month on Hydrea, 500 once a day, they dropped to 600. However, the initial side effects I suffered have gone now. But my mother died of Acute Myeloblastic Leukaema but she was 91. So they are aware with being JAK2 mutant positive, I could be vulnerable myself even though I am nearly 72.

  106. May 15, 2014 at 10:43 am

    Thanks, bushbunny for the advice. No sickle cell in my family. Only as I’ve been diagnosed with ET have I considered the pain in my legs might be attributed to something other than already diagnosed bursitis or menopause.

    • bushbunny
      June 8, 2014 at 3:02 am

      Have you heard of Myagalgia. It effects bones and muscles. Before I was diagnosed with ET, I had pain in my feet and legs,(like farcitus and couldn’t walk properly some days) auras (non migraine headache) itching, stiffness, etc.. My GP tested me for Vit D deficiency and I was 75% deficient. I took Vit D3 (Ostelin) and they cleared up. When I first saw my haemo he said they are also the symptoms of ET. So the condition may be connected.

  107. bushbunny
    May 16, 2014 at 4:30 am

    It wouldn’t harm you to take 2 capsules a day of Vit D 3 (Ostelin) it is cheap in Oz. I did and a lot of aches especially in my feet and lower legs, disappeared.

  108. Sharon Dudley
    May 21, 2014 at 8:39 pm

    Hi
    I am a white/ british 51 years old woman.
    I was diagnosed with ET in 2000, I have had different treatments. Started on Hydroxyurea tablets, but had severe mouth ulcers, I then took angrelide tablets, this made me anemic. I had to have blood transfusions. In 2007 I started Intron A injections, I have had no serious side effects from this, at the most flu like symptoms. My platelets are now well under control.

  109. bushbunny
    May 22, 2014 at 3:58 am

    I watched that video of a bone marrow biopsy, and the patient was awake? Gosh, we put our people asleep with a twilight sedative. I hope so. I am due for a another blood test today or tomorrow, that was ordered by my haemo. I got aches yesterday, mainly in my replacement hip region and lumbar region. And I have sores again that don’t like to heal.
    Itchy, about the same size. They remind me of how chicken pox starts and crusts over.I have never had chicken pox. The measles innoculation looks hopeful for some who have never had measles. It’s on the web. She had myeloma for years. She is cured. Done by the Mayo clinic too.

    • Jenn
      May 22, 2014 at 1:33 pm

      Bushbunny, I was awake for the BMB. It was quick but painful! If you are on facebook, there are several ET groups there. A lot more active there.

    • sonya
      June 28, 2014 at 3:19 pm

      Hi bushbunny I had bone marrow biopsy and was awake the whole time. I drove three hours to get home after the biopsy so like jenn said it was quick and think it was the most weird experience I ever had.

  110. bushbunny
    May 28, 2014 at 12:58 am

    Hi all, taking Hydrea during pregnancy is not advised. I had another blood test the other day and my platelets are down to 400 but my GP is worried that I am worried about my condition. She is in close contact with my Haemo.

  111. bushbunny
    May 28, 2014 at 3:03 am

    I have worn a silver bangle for over 40 years, and since I have been on Hydrea it has turned black and bronzey. Anyone had this problem too?

  112. Azmi
    June 5, 2014 at 3:35 pm

    Hullo Brian, read yr posting on ET and wondering how you are coping. My 58 yr old brother had just been diagnosed with ET and right now trying to decide if he should start on hydroxyurea. Appreciate your reply, thanks. Ps we are in Malaysia – Melaka

    • bushbunny
      June 8, 2014 at 2:53 am

      Azmi, We can’t answer this as we are not doctors, but it depends on the condition and what stages it goes through. Hydroxyurea treats cancer cells and lowers platelets. It is not recommended for women who are wishing to become pregnant or are pregnant. But if your brother sees a hematologist or has a bone marrow biopsy, should indicate which drug he is best suited for. It is a chemotherapy pill, and there are some side effects initially. Depending on how severe they are will dictate the dose etc., Driving can be effected too, and that is why I take mine at night time. best of luck.

  113. Sophie
    June 9, 2014 at 12:15 pm

    Thanks bushbunny. Im in medical research. Im already trying to find other sponsors (fingers crossed) but fundraising is very time consuming indeed. Hoping to get a new scholarship for a few months salary (waiting for a reply as I write) and if not, its out of my own pocket. Ive started to come to terms with that. However, the financial worries do add on to the inevitable stress of Being a Ph.D.Student;-) Nevertheless, it has all made me realise that I need to Explore a different work path when Im done with it. I want a regular job where Im off when I leave the office:-) it is not an option to work on the thesis part time, I will never get it done.

    • bushbunny
      June 10, 2014 at 1:27 am

      You could get a job in medical research, and they may allow you to complete it and pay for it. Anyway, you go with your gut. And peace of mind. I’m not that academic and did my university studies for personal enrichment, as a mature aged student I don’t think they actually wanted me there. But a Ph.D., you can put it on hold, and return when you feel like it. The work and thesis has not gone to waste. In fact I would think it would fare well if you wish to get a job in a medical research facility.

  114. sonya
    June 28, 2014 at 4:36 am

    Country : Australia
    Sex: female
    Age : 29 (at diagnosed)
    Ethnicity : Caucasian
    Thanks bryon for making this blog it helpful to read others stories.

  115. bushbunny
    June 28, 2014 at 5:43 am

    My last blood test showed my platelets were reduced to normal range but liver GGT’s were up way beyond normal. My Haemo told me to stop taking Panadol Osteo, that I have taken for years, and six a day. He says long use can upset my liver, as I have had Hep A in the past, that was never diagnosed. I have another blood test in a few weeks, and if they haven’t reduced then leave out the 1 statin I take a day. I get Panadol Osteo on prescription from my doctors.

    • sonya
      June 28, 2014 at 2:05 pm

      Hi bush bunny just wondering do u have a facebook account? there is a group on there for support and discussions of people personal experiences with Essential Thrombocythemia, Polycythemia Vera, Myelofibrosis and Chronic Myelogenous Leukemia it is private group

  116. bushbunny
    June 29, 2014 at 4:50 am

    I used to have messages from ET but not recently? I don’t know why?

  117. Sylvia markey
    July 8, 2014 at 9:44 pm

    I was diagnosed in April after having symptoms flashing lights in my eye headaches and had itchy skin which I had of and on for a few years also tingling in fingers. My platelet had increased to 610. I am 69 I have been prescribed hydroxycarbamide 500 mg per day my platelet is now down to 440 my Haematologist says a 410 is a normal level, so keep on with this poisonous tablet. I believe we have to take this for life

    • Pat
      September 23, 2014 at 12:12 am

      Sylvia, as we are about the same age and female, I am wondering if you had any side effects from the hydroxycarbamide? Is this the same as Hydroxyurea ? It’s encouraging to see that your platelets are almost in the normal range.
      Thanks, look forward to your response as I have not started treatment yet. I do not have the JAK2 mutation ; a bone marrow biopsy confirmed that I have Essential Thrombocytosis.

  118. bushbunny
    July 9, 2014 at 4:04 am

    Sylvia, I had those symptoms before taking 500 mg of Hydrea, I start two tablets of Vit D 3 (Ostelin) and the symptoms disappeared. I didn’t get headaches though just saw auras.I asked my haemo after my platelets dropped to 400 could I have a bone marrow biopsy, and he said it was not necessary, as I was found to be JAK 2 mutant positive. But I had to cut out Panadol Osteo that I was taking 6 tabs a day, (on prescription) my GGT’s were high in my liver and he thought it was them. I don’t drink.

  119. Lauren Bailey
    July 14, 2014 at 9:15 pm

    I am a 28 year old woman and was diagnosed with ET in February after months of tests and a bone marrow biopsy. My platelet count was over 1.5 million when I was diagnosed and have been told I will stay on hydroxycarbamide for the rest of my life until I want a family and then my doctor will put me on something else. I am struggling to find many people who have this condition as sometimes I feel down as no one understands. My fiancé and family are very supportive but I would like to chat to someone who is going through the same as me

    • Caroline Boyle
      July 15, 2014 at 12:34 pm

      Hi Lauren. I’m 29 and was diagnosed 4 years ago. I only take aspirin but my counts are slowly rising and are now above 1.5M. Still contemplating treatment but afraid of them all really. Hoping to start a family in the next years too which is a worry.

      Don’t worry you’re not alone! Facebook groups are a great place to hear other people’s experiences.

  120. Mike
    July 14, 2014 at 9:32 pm

    Hi Lauren, how long have you been taking hydroxycarbamide? Did you platelet count drop? Are you feeling any side effects from the hydroxy?

    Mike

  121. Rebecka
    July 18, 2014 at 9:47 pm

    Just found out that I have ET. They discovered it not because of any symptoms really, but they took the test because of my many miscarriages.. I’ve just started treatment with “Pegasys”, because of my strong desire to have a sibling to my 3-year old. Hopefully that’ll do the trick!

    I’m Rebecka, 32 year old Swede living in Sweden.

    • bushbunny
      July 19, 2014 at 5:15 am

      Hi Rebecka, all I know is about Hydrea. It does advise stopping it during pregnancy,. But good news, my recent blood tests for LFT, showed stopping Panadol Osteo, actually did lower my GGT’s to 121 from 272. Should be below 35! I am to have two more BTs in coming weeks, but told by my wonderful GP, not to cease statins.

      I hope Rebecka your dreams come true, and you dear 3 year old has a brother or sister. At least you are still young that will help.

      PS: My haemo told me a bone marrow biopsy was not necessary in my case, as I have had a blood test that showed I was JAK 2 mutant positive. No increase in Hydrea, it is doing its job so far, lowering my platelets to normal level.

  122. Jeremy
    August 2, 2014 at 11:24 am

    Hi!
    Jeremy
    Female/38
    Filipino
    For the past few 4 years, my platelet counts were playing around 380 to 600. WBC has always been borderline high and PCV also tends to be on the high side. I’ve noticed that my symptoms worsen when my allergies flare up. I was on aspirin before but started reacting to it so I had to stop. My current internist is suspecting PV (secondary or stress-related as all of these started when my father died) and wants to put me on Plavix as I react to aspirin. I had to do phlebotomy last week (my first time) due headaches. I am wondering if anybody had almost the same trend as mine? Thanks!

  123. Susan
    August 2, 2014 at 1:50 pm

    Bryan,
    First let me say how very sorry I am that you are Battling this disease.

    Bryan I feel the need to share with you that this is NOT a blood disorder, which is what my Dad was told in the beginning as well. It is Chronic Leukemia. It is a slow growing Cancer, and the Best thing for you to do for your life is find a specialist that deals with this everyday.

    MD Anderson is Very Good, and they will take you.

  124. bushbunny
    August 3, 2014 at 5:38 am

    Susan, there are many degrees of ET., But as I am positive for JAK 2 mutant, but negative for the Philadelphia chromosome, I might have to stay on 500 mg a day for life. But cutting Panadol Ostea, 6 tabs a day, my GGT’s have lowered, but my aches and pains have come back to a lesser degree. So I take 2 PO’s at night, seems to have moderated any of the aches and pains. I’m 72, so past my prime.

  125. Garden Gal
    August 3, 2014 at 10:13 pm

    Susan…ET is NOT Chronic Leukemia. I’m not sure why you are trying to scare folks…

  126. bushbunny
    August 4, 2014 at 2:31 am

    Susan, blood tests do show sometimes a increased level of platelets, and I was given Hydrea 500 mg a day. This lowered my platelets to 400-500 but my LFT showed high
    GGTs. Stopping 6 tabs a day of Panadol Osteo lowered them by half. I have started taking 2 PO at night. But I will be on that all my life, as my mother died of AML, but she was 91.
    But having tested for JAK 2 mutant, I was positive, and that means I could get leukema in the future.

    Garden Gal is right, there is no such thing as chronic leukemia. Leukemia is acute and generally effects white and red blood cells, not platelets so much. It’s like ‘grumbling appendix’, no such thing, Appendicitis strikes hard.

    Your doctor may have been referring for a lay person, the nearest he thought one could understand. Bit patronizing I think. People fear full blown leukemia, but there are several types. There are good treatments available now for most blood marrow disorders, so don’t stress or change your doctor to a specialist.

  127. melbert
    August 25, 2014 at 5:13 am

    hi guys..
    i have et also and it was started almost 1 month.im working aboard ship but im still here in philippines trying to lower my platelet.my last platelet count was 429 and my hema told me it is normal count but then i have to undergo again for cbc just to check if my count is lowering due to hydroxyurea.im taking now twice a day but last week it was 3x a day nd 2x a day on d nxt day.my real concern is how can i work aboard ship if im having this disease.?

  128. Garden Gal
    August 25, 2014 at 3:28 pm

    My platelet count recently was 519 (great for me), I’m on hydroxyurea 2x a day 5 times a week and 1x on weekends. I garden regularly and play soccer 3x a week. I’ve been told over and over by my hematologist…keep on being active, it’s great for your circulation and your overall health. I tell myself that I have a blood disorder that has to be treated but it doesn’t have me!

    • melbert
      August 25, 2014 at 3:57 pm

      hi garden gal,,
      my concern is how am i supposed to know my platelet count once im aboard ship and we are sailing for almost a month before we get to shore?any advce just to make sure that i can maintain my platelet count?

  129. Garden Gal
    August 25, 2014 at 4:12 pm

    Even when my platelet count was not very stable, I was checked once a month (now it’s once every two months. I think if you follow your Docs advice (is it 2x a day for hydroxy?), chances are nothing will change that drastically. Just get checked when you get back to shore again, and have the results sent where your hema can read them. I also looks at other blood cell counts since the Hydroxy affects them. Occasionally my red and white cell counts are on the low side, but my hemoglobin count is great (ability of red blood cells to carry oxygen…needed for all activities).

    • melbert
      August 26, 2014 at 1:19 am

      actually my other elements are normal nd last saturday my platelet counts to 429 and hopefully this coming saturday it will be normal..thats what im pplanning also if i get aboard ship whenever we go ashore i will tell my captain to arrange an appointment for me to check my cbc to the hospital or wherever available.by the way thanks gal.wish u all the best and god bless.

  130. Garden Gal
    August 26, 2014 at 1:43 am

    May the seas be relatively calm for you and all go well aboard the ship!

  131. Abdullah
    August 28, 2014 at 11:14 am

    Has anyone thought of/has experience counting your own platelets? It doesn’t seem very hard from an initial search

    if there is a accurate enough way to know like how diabetic patients have monitoring tools
    this would help if one is feeling sick with the meds they can decide to stay off of them for a while to feel better rather than pressing on with meds when they are not needed.

    I have experienced a full blood count being done within hours in a hospital for my initial diagnoses and I’m assuming if I was the only patient there it would have been much quicker

    The appointments are take hours and then weeks before you know the results at times here in the UK

  132. Pat
    September 22, 2014 at 11:59 pm

    I have recently been diagnosed with ET. I am female, 67 years, Caucasian and I live in BC, CANADA.
    I haven’t started treatment yet but have to make a decision soon. My hematologist wants to start me on a low dose of Hydroxyurea. Everything I read about this chemo treatment is
    scary. I have no symptoms, I lead an active life; I run 4 times/week, go to spin classes 2/times per week, weight train and yoga 3/ week. I am concerned that this treatment will seriously impact my quality of life. It’s difficult to accept that I now have to take medication that could make me feel sick when I am feeling well.
    Has anyone tried alternative treatment such as a Traditional Chinese Medicine?
    It is encouraging to hear that some people are able to lead normal lives.

  133. Garden Gal
    September 23, 2014 at 12:08 pm

    Usually the first treatment is to take aspirin. I can’t take aspirin (have Ulcerative Colitis diagnosis and it will cause me to bleed), so I’m on Hydroxyurea. I play soccer 3X a week, and garden a lot and I haven’t noticed any problems yet. So as far as I know you can remain active and I’m sure your hematologist will recommend that. Perhaps my supplementing breakfast with Spiralina, Maca, Chia & Moringa is really helping. These are super foods full of protein and Maca is supposed to help with oxygenating your blood (since Hydroxy reduces all blood cells I thought this would be helpful). I work at a health food co-op that carries all of these foods in the bulk section.

  134. Mike
    September 23, 2014 at 2:25 pm

    Hi Pat, what is your platelet count? I’ve been on Hydrea for over three years. I started at 500 mg but my counts were still to high. I’m now taking 1000mg everyday. When the dosage increased to 1000 I felt like I had a mild case of the flu for about two days. Since then I have not noticed any side effects. I’m 59, exercise almost every day. Most likely you won’t notice any side effects.

    Mike

    • Pat
      October 21, 2014 at 3:44 pm

      My platelet count in 860,000. Thanks, Mike for your encouraging response.

  135. Susan
    October 6, 2014 at 12:20 pm

    So excited to find this blog! I was diagnosed with ET last week – my platelet counts were 600,000 in August 2013 and are up to 800,000 now. My hematologist has put me on a dose of baby aspirin. She’s going to put me on Hydroxyurea next year for a month before a planned major surgery to bring the platelet count back down before the surgery, but unless my platelet count goes up over a million she won’t have me continue to take it.
    Name: Susan
    Country: United States
    Sex: Female
    Age: 53
    Ethnicity: Caucasian

  136. Ginny Grande
    October 6, 2014 at 10:31 pm

    I’m excited about this blog too! My husband was diagnosed with ET 5 yrs ago. His platelets were 2 million… YES, 2 million. Dr. doesn’t know how he survived this. He’s been on Hydrox, Anagrelide along with a few other meds. He is constantly lightheaded. Is there anyone out there experiencing this? The only time he feels pretty good is when he’s lying down or sitting in a chair.

  137. Donna
    October 19, 2014 at 7:16 pm

    I have had et since I was 17 I’m now 37 years old, I also have jak2 mutation and a massive splenogamoly, I have been on various medications throughout the years but back on hydrox at the moment. My main problems has always been my spleen and tiredness, I seem to cope well on hydrox, only side effect is itching and thicker skin (especially on my face), but this drug doesn’t help reduce my spleen size.

  138. Pat
    October 21, 2014 at 3:39 pm

    I haven’t seen any updates since May 2014. Is this blog coming to an end?
    Does anyone know if Traditional Chinese Medicine using Acupuncture and Herbs lower platelet counts?

  139. Kelly
    October 22, 2014 at 8:35 pm

    Hi All! My name is Kelly, I’m 57 & live in NYC. Over this summer 2014, I was diagnosed with ET. I was originally diagnosed with a case of dehydration @ ER. After some testing, the doctors concluded that I had suffered a mini stroke, which repeated itself 2x that same week. My platelets were over 1 million, so my hematologist prescribed Hydroxyurea. At present, I alternate taking 2 pills/day for 2 days, then 1 pill/day. I was granted a medical leave, in order to take care of myself. In the beginning, I felt dizzy, without much strength or energy, and suffered from constant headaches. My neurologist recommended to exercise daily (brisk walking, static bike) to get my heart pumping & more oxygen flowing. July and August were the hardest; in September, I started feeling more energetic. Now, I realize that when I do the walking, I don’t feel so fatigued. I try to eat healthy, so I looked on line for natural ways to keep platelets up: Pomegranates (or the juice), wild salmon, Shitake mushrooms, red wine. These foods are not instead of the medication, but rather a way to enhance better health. I still feel fatigue at times, so I accept it & try to rest. I hope my experience can be helpful to others. Thank you all for sharing, especially Bryan Tan, who began this amazing journey for all the rest of us! God bless!!!! Take care, Kelly PS:Pat, I don’t know if Acupuncture might work, but it’s worth looking into.

  140. Mike
    October 22, 2014 at 9:28 pm

    Kelly, In your post you say you are looking “for natural ways to keep platelets up.” Just to be clear, with ET you want your platelet count to go down, not up. You can’t go wrong with a healthy diet. Before I started on Hydroxy I went to a Naturopath. He put me on a cleansing diet for 20 days. No wine, coffee, processed foods, only rice, raw veggies and fruit. I lost close to 20 lbs but my platelet count continued climbing. My hematologist told me that changing my diet wouldn’t work, but I had to try. She was right.

    Currently I take Hydroxyurea. 500 mg twice a day. My last count was close to a million. I have another blood test today. The goal is to stay below a million and I am concerned that I will have to increase my dosage or switch to a different medication.

    I really don’t have any symptoms. I exercise regularly and eat mostly veggies. This doesn’t seem to change the platelet count but it does improve the quality of life. The point is I’ve tried a lot in terms of diet and exercise without much luck.

    Mike

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