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Old 06-16-2009, 09:56 PM
 
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Hi, I was just diagnosed with ET. My platlet count is about 800,000 & went up pretty rapidly from 600,000 about 4 months ago. I just started hydroxy urea (500mg/day) and take 120 mg of aspiring a day. I am 49 yrs old.

I have run 6 marathons
I've was running up to 25 miles/wk when I had 1st odd symptoms (scotoma, burning fingers, some mild diziness and lack of balance)
Other notable symptoms right now include elevated bp (~ 140/95 today) anyone else have that? And insomnia. I have always been a real good sleeper, and I don't think it is stress - but maybe? I just don't go to sleep very easily...anyone else have that? Finally, my legs feel rubbery a lot - like I've just completed a long run.

Anyways, I am lookng forward to getting better, and wonder if any of you might have any comments or inputs that mioght help me.

Thanks so much
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Old 06-18-2009, 08:26 AM
 
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While there is no cure - yet- it is treatable (mine with hydrea and low dose aspirin).

Normal platelet range is 140,000 to 440,000 thousand and you should absolutely aim to keep within, or very close to the highest allowed (440,0000)

Do not neglect treatment as you are highly succeptible to stroke and cardiac events if left untreated.

I have been under medical supervision and have been well in control for over 5 years without incidents.

Chin Up!

Last edited by LadyRobyn; 06-23-2009 at 08:55 AM.. Reason: No links allowed with less than 10 posts...
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Old 06-22-2009, 06:59 PM
 
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Thank you - I am working at keeping the chin up!
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Old 06-24-2009, 08:21 AM
 
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Default The latess on research as of 6/22/09

StreetInsider.com - Cytopia Lodges IND for JAK2 Inhibitor CYT387

Cytopia Lodges IND for JAK2 Inhibitor CYT387

June 22, 2009 10:05 PM EDT

MELBOURNE, Australia, June 22 /PRNewswire/ -- Cytopia Ltd (ASX: CYT) announced today that it has filed an Investigational New Drug Application (IND) with the US Food and Drug Administration (FDA) for its novel, potent orally active JAK2 inhibitor CYT387.

Last edited by LadyRobyn; 07-08-2009 at 08:02 AM.. Reason: edited to make copyright compliant
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Old 06-29-2009, 09:31 PM
 
13 posts, read 151,069 times
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Default thanks

Baysider, thanks for posting this info. Who knows - maybe a cure?
Anyways, I'm on the Hydroxy Urea for about 1.5 weeks and my platelts climbed a bit, up to 830 (from 790). My doctor doubled my dose to 1000mg/day, and he expects the count to drop fairly rapidly, so he is having me get frequent blood tests. So far, no adverse reactions to the HU, and my blood pressure is dropping. I still get fatigued muscles fairly easily. Typing makes my forearms tired. I think the fatiuge is getting better.

I was JAX2 postive when they looked. Also, my bone marrow has deformed (not sure how else to say it) platelet precursors....my question in connection with all of this is - could some other condition besides essential thrombocytosis cause these items - the JAK2 and deformed precursors?

I hope you are doing well
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Old 07-13-2009, 03:53 PM
 
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I have been diagnosed with ET recently, I am 56. I noticed my platelet count high for over 15 years but none of my doctors ever mentioned it – I asked, but they always said it was nothing to worry about. Over the years I have been diagnosed with all sorts of things such as, ocular migraines (explaining my headaches), plantar fasciitis (burning in fingers and toes), virtago, chest pains, shortness of breath, etc. But one day recently my heart doctor noted to me my platelets were high and he wanted me to get it checked - just to be sure.

Well, bottom line is I can cross multiple illnesses I have off the list and bring it down to one core illness - ET. Sigh. It was just confirmed by a hem/onc doctor about 4 weeks ago. My last platelet count was over 700 - how funny, I thought it was really 700, not 700,000 and I thought I had time to deal with it.

I guess my question is, if this is such a rare disease, they why are there so many people with it? Even my hem/onc doctor said he had others with this illness.

I am slightly stunned at the moment and sometimes mush out into tears thinking I'm living in a game of russian roulette. Today I'm just surfing to learn about it and find a new doctor because I had to change insurance after the diagnosis and my doctor doesn't take Aetna so the search begins.

I plan to use the tools I find from others to be able to handle my care correctly and hopefully choose a doctor here in NJ that is really knowledgeable with ET and isn't just book knowledge.

Thanks everyone for all that you've shared.

Last edited by NJCathie; 07-13-2009 at 03:56 PM.. Reason: HTML showing up in paragraphs
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Old 07-19-2009, 06:06 AM
 
Location: NJ
20,242 posts, read 28,045,051 times
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Quote:
Originally Posted by NJCathie View Post
Well, bottom line is I can cross multiple illnesses I have off the list and bring it down to one core illness - ET. Sigh. It was just confirmed by a hem/onc doctor about 4 weeks ago. My last platelet count was over 700 - how funny, I thought it was really 700, not 700,000 and I thought I had time to deal with it.

I'd consider the Cancer Institute in Brunswick as it is a teaching place
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Old 08-22-2009, 09:09 AM
 
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Thanks Roselvr, I currently have an appt at Robert Wood Johnson, in New Brunswick....I wonder if they are affiliated.
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Old 08-23-2009, 01:18 PM
 
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Default Kebin

FYI - my platelet count dropped from 830,000 in early Jun to ~270,000 by mid August. My dose of HU started at 500 per day, then went to 1000 per day, then up to 1000/1500 (alternating days), then back to 1000 per day, and after the latest results, 1000/500 alternating - actually M-W-F 1000, Su-T-Th-Sa 500. I am feeling more peppy, but still have some minor dizzines and my arms and legs get much more tied than normal after little activity. However, yesterday I did walk 18 holes of golf in 90+ degree heat, which was encouraging.
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Old 09-15-2009, 04:56 AM
 
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I was diagnosed 4 years ago,I am now 29yo and 8 weeks pregnant!I've taken hydroxyurea on and off,i tried interferon but i couldn't tolerate the side effects.i tried hydrea with aspirin but i started bleeding,I've tried not taking any drug but my platelets went over 2 million!!So i'm back on hydrea only and all is good,no side effects,thank God.Only pregnancy symptoms
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