Essential Thrombocytosis

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RE: Essential Thrombocythemia

by Melodee07 on Sun Dec 21, 2014 05:02 PM

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I have had ET also for 7 years and I am also 60.  Wasn't diagnosed until 2 years ago since my PCP kept missing it.  Doc may start me on hydrea in 6 mos.  Platlets keep climbing now at 750,000.  The stress and worry are taking a toll on me.

RE: Essential Thrombocythemia

by moving on Sun Dec 21, 2014 07:19 PM

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Melodee07,

I fully understand the stress and worry, especially during the first few years following an ET diagnosis.  Remember you are just beginning this journey and it's one that your fellow patients on this web-site are also trying to understand.  You are not alone!

Take care!

Moving.

RE: Essential Thrombocythemia

by JeanieBeanie on Mon Dec 22, 2014 03:53 PM

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Melodee07,

I agree with moving.  you are not alone!  We are all here for each other for questions or just support when it is needed.  I remember when I was first diagnosed 5 years ago I was terrified.  The hardest thing for me has been the fatigue.  I am a very active person and i've had to adjust my lifestyle a bit and need rest more.  Hang in there and know that you have support and people care :) 

Take care,

Jean

RE: Essential Thrombocythemia

by Karenann12342 on Mon Dec 22, 2014 08:44 PM

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I was afraid at first with the diaognosis of ET but since my platlets stay down and my other blood work is good I try not to over think it.  My doc always tells me I could run a marathon not sure if she is over simplifing or not.  My 3 month stretch of joint pain has lessened considerable and  I am wondering if I has some sort of virus or reaction to something and as far as being tired I am glad to know its not because I am lazy but actually have a reason for it.  Its the fear of the unknown that scares most people and so far none of the doctors I go to seemed to think its a very big deal.  My fear is what it can become later on or if the meds afer a long time have any effect.

RE: Essential Thrombocythemia

by boisid on Mon Dec 22, 2014 09:27 PM

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On Dec 21, 2014 5:02 PM Melodee07 wrote:

I have had ET also for 7 years and I am also 60.  Wasn't diagnosed until 2 years ago since my PCP kept missing it.  Doc may start me on hydrea in 6 mos.  Platlets keep climbing now at 750,000.  The stress and worry are taking a toll on me.

Hi Melodee,

I have had high platelet readings since they have been measuring it! It was first noticed when I was 41 years old (I'm now 68), and no name was given to it other than the very generic "myeloproliferative disorder.". My platelet levels always hovered around 1 million and as high as 1.2 million. Finally, about 6 or 7 years ago, I was given the diagnosis of essential thrombocytosis, or ET. 

My hemotologist started me of on very low doses of hydrea and very slowly increased the dosage. For the last 4  years (maybe 5), the levels have been 350-450000, which is just fine.

As I've posted before, I am a very active physical fitness advocate, and have been for most of my adult life. The ET hasnever hindered me from my exercising, nor has the hydrea from which I have no side effects. 

As long as you are being monitored by the right hemotologist you'll be just fine. This is especially true vis-a-vis new research and new drugs being developed which may not only control ET, but if we are lucky, cure it!

The point is to live your life, and do not be frightened in to simply curling up and feeling sorry for yourself. ET is NOT a death sentence nor an indication of a lessened life expectancy.

Once again, make sure you have the right doctor(s) and you'll be just fine.

Best wishes for a healthy and happy Holiday season.

Barry

RE: Essential Thrombocythemia

by Melodee07 on Mon Dec 22, 2014 11:13 PM

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Barry,

Thanks for the words of encouragement.  I am 61 and platelets have elevated for the past 7 years but not caught until recently when I switched my PCP.  What you are telling me is exactly what my hemotologist has also said.  However I do have to repeat the BMB because enough samples were not obtained the first time.  I just called my doc today and waiting to hear when I can schedule.  I know I need to focus and pull it together.  

Happy Holidays to you and thanks again!

RE: Essential Thrombocythemia

by six13 on Wed Dec 31, 2014 04:17 PM

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Hi everyone!

I´am 29 year old woman, who has ET for 2 years now. It was discovered after my second child was 9 month old. I felt very tired and had tingling hands and legs. My doctor did blood test and it showed 1 million palatels. I was sent to hematologist, who did other tests, too. Of course this bone marrow test too (wasnt as bad it has sounded). It was ok, and I got aspirin. But it didnt help, I was tired and finally I was tired of being tired. So, I have done inferon alfa injections 3 times a week about 1,5 year now. my palatel level is under 400 and I feel quite good.
At first I was really scared and thought that I am going to die soon, but now I take that everything has a reason and try to be positive :)
I want to have third child and looking for info about pregnancy while having ET. Everyone has an experience?

Happy New Year and glad I found this forum. I live in Estonia and ET is very very rare here, so I dont have any good information about it.

Signe

RE: Essential Thrombocythemia

by moving on Wed Dec 31, 2014 06:54 PM

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Dear Signe,

I like your positive attitude.  I haven't read anything regarding pregnancy with ET patients.  If I do, I'll copy & post it to this website.

Happy New Year to you and the other website participants.

Moving

RE: Essential Thrombocythemia

by daizyjune on Wed Dec 31, 2014 09:42 PM

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Signe,

Go to this website:

www.mayoclinic.org /.../thrombocythemia/.../con-20034386

once there, on the left side of the webpage, click on 'Complications'

It discusses possible complications with pregnancy.

Hope this helps,

daizyjune

RE: Essential Thrombocythemia

by hometypist on Tue Jan 06, 2015 03:40 AM

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Hi All,

I would like to know when is the good time to take Hydroxurea tablet, i mean at what time does it benefit us ET patients.  I normally take it immediately after breakfast and after dinner with a little bit of water.  

Just a query.  Is it to be taken on empty stomach before food or after food after 1 hour

Do we need to drink lots of water and does it make a difference in the dilution of the Hydroxurea capsule powder.

Also, wondering if any one of you with ET has got a recurrence of nerves pains when the platelets starts going up again.  In my case, the first time my nerves went almost dead was when my platelets when upto 1247000, doctors brought this down hydroxurea and the nerve injury within the thumb was healed by rubbing oil continuously for 1 month.  Thereafter I started taking care but as all of you are aware that at some point of the time the hydroxurea was reduced and in my case i went of it completely altogether and once again the platelets reached 1200000 and the nerves went dead but this 2nd time i just took the tablet and brought this down no treatment was done to heal the nerves but after the platelets went down, the nerves pain vanished I assumed that it was due to that but now i find that even when the platelets reaches 595000 my nerve pain starts and it is very painful, anyone faced this issue, please let me know and what action has been taken.  In face to me this is a indication that platelets is rising.  Also a indiction to increase the hydroxurea to 3 tablets though in some way it is good indicator that my platelets is rising but the pain associated with the increase in effecting my day to day life.  Please advise.

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