Young People With Et

Hello,

 I have been reading the message boards for a while now and figured it was about time for me to post something myself.  My name is Dee, I am 27 years old and recently (sort of) diagnosed with ET.  I originally presented to a hem/onc in 1999 with an elevated platelet count.  He just blew me off at the time.  Recently, my PCP (I've sinced moved into a different state) referred me to another Hem/Onc.  I have had platelet counts between 4-600,000 since 1999. I've been on Hydrea and asprin for 2 weeks now. So far so good... little nauseous in the morning, but other than that, the only thing that really bothers me is the constant exhaustion.  (but to tell the truth, I've been tired for about 2-3 years now, so I don't think that has anything to do with the Hydrea). 

I wanted to see if anyone has any data regarding life expectancy in young people with ET?  I've done alot of digging in medical archives (I'm lucky because I have access to ALOT of medical info, I work for a large medical research hospital)... what I've come up with is: life expectancy is about the same as the general population, or 10-15 years.  It's the latter that concerns me.  I'm 27. I've probably had this since at least 1999.... so that would put me at about 9 years with this.  Kind of a scary thought.  Well, I'll stop rambling for now, but any information anyone can provide is greatly appreciated. 

 Thanks,

Dee

Hey there! I'm 25 and was diagnosed with ET in November, 2006. My platelet count was 1.69 million. I was originally told to begin taking Hydrea (hydroxurea) and a baby aspirin a day. After reading enough medical literature on the effects of Hydrea I wanted to be absolutely sure if this was the only option for me. I didn't want to take drugs for the rest of my life. My husband was doing an enormous amount of research online at similar message boards such as this and found that there were conflicting reports for young people with ET who were otherwise asymptomatic who were being told NOT to medicate. So, to find the answer to this dilema and to be as best informed as possible on the conditions of ET I went to The Mayo clinic and made an appt with Dr. Tefferi. He is one of the worlds foremost specialist on ET and a generator of many of the major current ET studies. He told me that I was no more likely to die of a blood clot than any other healthy person my age. He implied that the general reason that young people are told to take Hydrea is to cover the prescribing Dr's interests and liabilities. He said that life expectancy for me was pretty much the same as any other healthy person my age. "Pretty much" meaning that life expectancy already varies in any age group... Interestingly, my platelet count has continued to fall over each blood test that I take. From 1.69 million it now is 602,000. I am not on any medication. I lead a pretty healthy lifestyle. And I don't think of myself as sick, or even as with a "condition"...I know my platelets will continue to fall. I think that this positive attitude towards myself is also a great contributor to my reality. If you are conflicted about taking hyrdea and need a Dr's opinion get an appt with Dr. Ayalew Teffari at the Mayo clinic. He was an amazing Dr. Don't worry about life expectancy, you will live just as long as anyone else who is your age. You are no more likely to die of a blood clot than any other healthy person your age who is also asymptomatic. Feel free to contact me with any questions!

On 4/22/2008 Sleepystudent wrote:

Hello,

 I have been reading the message boards for a while now and figured it was about time for me to post something myself.  My name is Dee, I am 27 years old and recently (sort of) diagnosed with ET.  I originally presented to a hem/onc in 1999 with an elevated platelet count.  He just blew me off at the time.  Recently, my PCP (I've sinced moved into a different state) referred me to another Hem/Onc.  I have had platelet counts between 4-600,000 since 1999. I've been on Hydrea and asprin for 2 weeks now. So far so good... little nauseous in the morning, but other than that, the only thing that really bothers me is the constant exhaustion.  (but to tell the truth, I've been tired for about 2-3 years now, so I don't think that has anything to do with the Hydrea). 

I wanted to see if anyone has any data regarding life expectancy in young people with ET?  I've done alot of digging in medical archives (I'm lucky because I have access to ALOT of medical info, I work for a large medical research hospital)... what I've come up with is: life expectancy is about the same as the general population, or 10-15 years.  It's the latter that concerns me.  I'm 27. I've probably had this since at least 1999.... so that would put me at about 9 years with this.  Kind of a scary thought.  Well, I'll stop rambling for now, but any information anyone can provide is greatly appreciated. 

 Thanks,

Dee

Oh yeah! Your platelet count is nearly within the realm of normal (450 is the top range) and the 10-15 year life expectancy thing is most likely in reference to the people that have ET in conjuncture with all sorts of other illnesses and are already elderly....

Hi everyone,

I have had ET for 15 years now and I'm 49. My count reached over 1million and I was put on Hyderea but got a second opinion and was told to stop it due to the possibility of developing Leukemia after long term use.

That was about 10 years ago. I do have to take Hyderea when having any sort of surgery to control my platlets and decrease the risk of having a stroke.

I was put on Asprin for years as well and have come off that too. I have an enlarged spleen and the doctor keeps an eye on that.

He has told me that this disease usually goes about 15 years before things start to go wrong. He is concerned that my bone marrow will fibrose and once this happens there is nothing that can be done. I will need a bone marrow biopsy or I will die.

I had the JAK2 mutant blood test done about 6 months ago and it came back negative which is great.

You should all have that done.

My count has been pretty stable for the last 2 years, It is 710 at the moment and goes up and down.

I too would appreciate any information anyone has on this rare disorder as this is usually disgnosed to older people. From your messages I can see that alot of young people are now getting this.

Could you all let me know if you have at any stage been exposed to radiation or power lines. I am trying to establish a connection between ET patients.

Please stay in touch and let me know how you are going.'

I am from Australia and I have never met anyone else with this blood disorder.

Cheers

Roula

I am 48 and just diagnosed with ET after my physical revealed a platelet count of 1284.  I probably have had this since around 2001 when platelets were 442 and have increased ever since.  In 2006 platelets were 937 and in 2007 912, so I thought a downward trend might be happening.  My primary care physician did not seem concerned, but I thought if platelets went over a million I would press the issue.  When I rescheduled with him, he agreed I should see a hemotologist.  She is wonderful, but was gravely concerned I was at high risk for stroke and put me on anagrelide.  She also indicated I should not go on the vacation I had planned (a lengthy car trip)  I also had an immediate bone marrow aspiration and biopsy.  Platelets in blood sample then were 1455.  After one week of anagrelide platelets are down to 413.

 I am interested in experiences of others, as well as the stress angle.  I am a public school administrator, a job in which the stress is tremendous.  I have earned two master's degrees since 2000, worked fulltime continously, and have an 11 year old son.  I also have been a volunteer Boy Scout leader and this year added a sixth day of work as the church accompanist to my schedule.  (This alone added to tremendous stress since I never would have believed how church people behave - and playing for two services and remaining at church for six hours has been ridiculous)  Since my platelets jumped about 500 alone this year, I have to make a connection to stress.

 In addition, I did have a type of radiation treatment on my neck way back in the 1960's after being injured in a car accident.  My mother died at 45 of a heart attack and suffered thrombophlebitis prior to during her pregnancies and after. ( I had thrombophlebitis when I was pregnant and had to go on Heparin, but don't know what platelet situation was then)  She was also a smoker.  Her mother had a stroke at 61.  So I'm wondering about any hereditary factors.

Appreciate any information/suggestions from others in my situation.  I have not discussed alternate medications with my doc, as she seems confident about the anagrelide.  From what I read, hydrea has the leukemia conversion to worry about, and I'm not sure about interferon.  I am also taking a full aspirin daily.

 

On 7/4/2008 pianomom wrote:

I am 48 and just diagnosed with ET after my physical revealed a platelet count of 1284.  I probably have had this since around 2001 when platelets were 442 and have increased ever since.  In 2006 platelets were 937 and in 2007 912, so I thought a downward trend might be happening.  My primary care physician did not seem concerned, but I thought if platelets went over a million I would press the issue.  When I rescheduled with him, he agreed I should see a hemotologist.  She is wonderful, but was gravely concerned I was at high risk for stroke and put me on anagrelide.  She also indicated I should not go on the vacation I had planned (a lengthy car trip)  I also had an immediate bone marrow aspiration and biopsy.  Platelets in blood sample then were 1455.  After one week of anagrelide platelets are down to 413.

 I am interested in experiences of others, as well as the stress angle.  I am a public school administrator, a job in which the stress is tremendous.  I have earned two master's degrees since 2000, worked fulltime continously, and have an 11 year old son.  I also have been a volunteer Boy Scout leader and this year added a sixth day of work as the church accompanist to my schedule.  (This alone added to tremendous stress since I never would have believed how church people behave - and playing for two services and remaining at church for six hours has been ridiculous)  Since my platelets jumped about 500 alone this year, I have to make a connection to stress.

 In addition, I did have a type of radiation treatment on my neck way back in the 1960's after being injured in a car accident.  My mother died at 45 of a heart attack and suffered thrombophlebitis prior to during her pregnancies and after. ( I had thrombophlebitis when I was pregnant and had to go on Heparin, but don't know what platelet situation was then)  She was also a smoker.  Her mother had a stroke at 61.  So I'm wondering about any hereditary factors.

Appreciate any information/suggestions from others in my situation.  I have not discussed alternate medications with my doc, as she seems confident about the anagrelide.  From what I read, hydrea has the leukemia conversion to worry about, and I'm not sure about interferon.  I am also taking a full aspirin daily.

About the stress factor.., I have been told on numerous occasions by my hematologist to make sure my life has limited stress.... Yeah right, thats going to happen. I brought up my kids on my own, nursed my father through lung cancer until he died and now I am nursing my mum who is sick with cancer.

I too have a stressful job as a teacher in the TAFE sector and am trying to cramm in as much as possible into one day.

He has also told me to make sure I have a well balance diet as that is really important.

I don't really have any symptoms that I am aware of, I could just be missing them and relating them to other things though. I do have an enlarged spleen which he keeps an eye on.

My count was over 1million though at the beginning ( 15 years ago) and I did take Hydrea for a while. After that it hasn't gone over 800. For the past 3 years it has stabilized at 600 - 700.

I too am interested in other opinions on both treatment, symptoms and stress. Although I don't think stress affects this directly. It throws our immune system out and therfore affects this indirectly.

As I mentioned earlier I have had this for 15 years and am starting to panic a little thinking things are going to start going wrong.

Has anyone had this for longer and what treatment have you had.

Good luck to all of you.

Roula