Essential Thrombocytosis

I am 34 and have ET... I currently go to MD Anderson which is one of the greatest Cancer research hospitals in the world... I have been taking a baby aspirin a day for almost one year and now I am taking one Hydrea per day... I don’t feel any different, but I m active and work out five days a week... I also have a rare disease called Anklosing spondilitis which affects your joints... For the most part I am doing great but both diseases bring me down from time to time.... ET and PV have a good life expectancy of about 15 years... However with the discover of Jak 2 targeted drugs are on the way within about 2 to 4 years... keep positive and don’t think twice just live life to the fullest...

look at jak 2 they have a trial drug already

How disapointing for both of you. My ET is not as bad as your husbands at this point but I don't feel like anybody knows much about this. Or if they do it isn't much. I changed my primary care doctor and thought that she could monitor my PTL's and give me hydrea and was told that she could not do that only an oncologist could do that. I've also been told that Hydrea is a chemo drug...is this true? I have to do CBC every month now and see oncologist every three months. My PTL's are down to between 350 & 400 with 1500 hydrea one day and 2000 on the next. I am also on Arimidex as a breast cancer blocker which has side effects of clots but nobody seems concerned but me. Do we make too much of this or not enough? Glad you are out there to talk to. THANKS!!
Maryann V

My plt count is 557 but i was that that they couldn't put me on any meds for it until they were above 700. Do you know why this might be? And do you know any symtoms for blood clots so i know what to watch for?

Stephanie

I was diagnosed with ET when I was 20 years of age. My platlette count ranged from 750 to almonst 1 million. I started taking aglaride (not sure of the spelling) before it was even approved. I had bad side affects to the medicine, hart palpataitons. I came off of it. I am not 37 I have 2 children and have not been symtomatic as far as I know. My platelett count still stays around the 800-900 range. I do not really notice anything health wise. I workout at least 5 days a week lifting weights and running. I worry about having ET every now and then, but so far, so good. I have also read that pregnancy is hard to maintain having ET, cases of spontainous abortion ealry on in the pregnancy, I have had two children with no complications. Actually during both of my pregnancys, my platelett count was around 170's. So for me, I feel as I am doing well. Hope all of your out there with ET are also. Take care

Ive had thrombocythemia for the past 20 years. The first 16 years I only had to take baby aspirin. Regular aspirin is too strong and your body can only absorb 81 mg of it everyday. Then 5 years ago, my headaches took a turn for the worse and occured almost everyday. No wonder, my platelets were 2 million. I was placed on anagrelide (2 pills in the morning and 2 pills in the evening), and the headaches escalated. After two months my body got used to it and the headaches disappeared altogether. Now my counts are normal, but I have to take anagrelide (or agrilyn) the rest of my life. Your husband's thinning hair has nothing to do with the medication or his blood condition. But the medicine does have an effect on sex drives and may cause erectile disfunction. Thanks for letting me share.
Fellow sufferer,
RLantoria

Hi there,
I was diagnosed with ET 5 yrs ago, at that time my ptls were in the low 600,000 they have steadily increased to the highest I have been at now 951,000. All along I saw a hematologist every few months who said that when I reached 1 million, we would talk about medication. A couple weeks ago, I was having severe headaches and really blurred and double vision and dizziness. Went to my FP, who ordered blood work and an MRI for the same day, called next morning, said I had been having mini-strokes in 2 seperate areas of my brain. Sent me back to the hematologist, who reluctantly put me on Hydroxyurea 500 mg once daily just 6 days ago.
I am to see him again in 2 weeks and a neurologist in January. I don't know yet what to think of all this and how serious to take it. My hematologist has been very non-chalant...thanks for listening and I pray for you all...

Hey! I was just diginosed with Essential Thrombocythemia last Novmeber. They found out when I have to get an emergencey blood test done because my doctor thought I had diabetes Turns out I didn't, but they did find my platlets to be at 2.4 million, the lab tec thought they did something wrong. A week later I was tested again my a hematologist and she found my platlets to be at 3.3 million. Along with this I had an elevated white blood cell count.

I was put on 2000mg of Hydroxyurea and asprin right away. Then had to wait a nerve wracking 2 months brofre my platlets were low enough to get a bone marrow test done to see if it was leukemia.  Luckly found it wasn't be it confirmed my ET.

My levels were down to 478,000 in Janurary, but are now back up to 534,000. I'm also down to 1,500mg of Hydroxyurea.

I'm feeling pretty good and have no symptoms yet. It's nice to know that there are people out there who have lived with this for quite sometime, and are doing great!

I am 37 and have been diagnosed with ET since Dec. 06.  I am on hydrea 1500-2000 mg aday.  My counts were as high as 700.  My question is does anyone have headaches and if so can you describe them.  My headaches started not long before i was diagnosed with ET.  My platelets have been decreasing but the headaches havent.  I have had to pull over while driving to wait until the pain has subsided some. 

I had headaches when my Platlets were high last November. Now that they're on the rise again, they came back. My doctor says she doesn't think they're conected, but they really don't know that much about ET, so the best she could say was maybe.

Then again, when I look back, I got the headaches when I was in a very stressful period at school. 

It's hard to say, but mine were never so bad as yours sound to be.