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Old 02-27-2008, 11:37 AM
 
Location: Beautiful Upstate NY!
12,252 posts, read 17,151,423 times
Reputation: 5668

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My wife had been diagnosed with this about 2 years ago when her primary noticed platelet counts consistently above 600,000 (per microliter). She sent her to an oncologist where her doctor there had initially prescribed a low dose (81mg) aspirin therapy and has been monitoring her counts twice a year. They slowly would creep up to 700k+ to 800k+ to 909k (6 months ago) and today over 1 million. Her doctor feels that the 1 million mark is the point to take some stronger action and is thinking of prescribing a drug called hydroxyurea.

She has no symtoms other than the high counts (bleeding and clots are the specific two to look out for.) She had never had a nosebleed in her life, but has had two since this diagnosis...nothing major...a quick <1 minute slow bleed that stopped right away.

We are starting to get a little concerned here....does anyone else here have this disease or real-life experience with it? I've used the search function here and did not find any. I've also read all the websites (Mayo Clinic, etc.,) so medically we know what's going on...but should we be really worried? The doctor seems cautious at this point and wanting to bring the count back under 1 million.

Thanks.
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Old 03-01-2008, 09:30 AM
 
Location: NJ
7,129 posts, read 13,856,217 times
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You might want to start googling. I just did a quick google search & see this at the Mayo clinic.

I see you are in NY. How far are you from Slaon Kettering? It might be time to see a specialist.

good luck
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Old 03-01-2008, 10:19 AM
 
Location: Pittsburgh, PA
2,868 posts, read 6,276,264 times
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there maybe an underlying cause of her elevated platelet counts...Have they done any testing as to see why they are high? I know the object is to lower the count but they also should try to find out WHY they keep climbing so high...

I would also recommend a specialist...

Like I said once before, You would not want a Ford dealer trying to fix your Jag right? You need a Jag dealer...same thing...
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Old 03-01-2008, 10:23 AM
 
Location: NJ
7,129 posts, read 13,856,217 times
Reputation: 3873
Quote:
Originally Posted by *Danielle* View Post
there maybe an underlying cause of her elevated platelet counts...Have they done any testing as to see why they are high? I know the object is to lower the count but they also should try to find out WHY they keep climbing so high...

I would also recommend a specialist...

Like I said once before, You would not want a Ford dealer trying to fix your Jag right? You need a Jag dealer...same thing...
Excellent advice! I can't rep you..
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Old 08-28-2008, 11:58 AM
 
Location: Beautiful Upstate NY!
12,252 posts, read 17,151,423 times
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Update: the oncologist will be performing a bone marrow biopsy in 2 weeks and will be starting her on a drug named hydroxyurea in an effort to bring the platelet count down.
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Old 08-28-2008, 07:53 PM
 
2,593 posts, read 6,388,254 times
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Quote:
Originally Posted by *Danielle* View Post
there maybe an underlying cause of her elevated platelet counts...Have they done any testing as to see why they are high? I know the object is to lower the count but they also should try to find out WHY they keep climbing so high...

I would also recommend a specialist...

Like I said once before, You would not want a Ford dealer trying to fix your Jag right? You need a Jag dealer...same thing...

The original poster noted his wife IS seeing a specialist in the initial post...an oncologist....oncologists are trained as hematologists as well...

Also, by definition Essential Thrombocythemia is a myeloproliferative disorder that is idiopathic....in other words, no known cause
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Old 08-28-2008, 08:28 PM
ino
 
Location: Way beyond the black stump.
681 posts, read 1,378,956 times
Reputation: 954
Quote:
Originally Posted by jfkIII View Post
My wife had been diagnosed with this about 2 years ago when her primary noticed platelet counts consistently above 600,000 (per microliter). She sent her to an oncologist where her doctor there had initially prescribed a low dose (81mg) aspirin therapy and has been monitoring her counts twice a year. They slowly would creep up to 700k+ to 800k+ to 909k (6 months ago) and today over 1 million. Her doctor feels that the 1 million mark is the point to take some stronger action and is thinking of prescribing a drug called hydroxyurea.

She has no symtoms other than the high counts (bleeding and clots are the specific two to look out for.) She had never had a nosebleed in her life, but has had two since this diagnosis...nothing major...a quick <1 minute slow bleed that stopped right away.

We are starting to get a little concerned here....does anyone else here have this disease or real-life experience with it? I've used the search function here and did not find any. I've also read all the websites (Mayo Clinic, etc.,) so medically we know what's going on...but should we be really worried? The doctor seems cautious at this point and wanting to bring the count back under 1 million.

Thanks.
Excuse my ignorance, and not knowing if she is on the pill. I know of a younger woman, (30's), who had elevated platelets and I believe it was traced to the pill she was on. She went off the pill and the levels dropped down. May be totally irrelevant but thought it was worth mentioning.
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Old 08-28-2008, 11:35 PM
 
Location: Beautiful Upstate NY!
12,252 posts, read 17,151,423 times
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Thanks ino...no pill. Also, she's in her mid-40's (told never to give a woman's exact age!) Right now, she seems to be taking this in stride. I am worried (but not letting her know).
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Old 08-29-2008, 06:06 AM
 
7,081 posts, read 24,836,110 times
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The point is that the platelet counts need to come down because there's a danger of abnormal clotting. Hydroxyurea is a very old, well-known drug and usually helps.

The oncologist is absolutely correct in planning a bone marrow aspiration and biopsy. As one of the spectrum of myeloproliferative disorders, essential thrombocythemia is something that is usually cared for by a hematologist-oncologist.

In the 1970s hematology was its own little subspecialty, within general internal medicine. Then, in the mid 70s the subspecialty board declared that all hematologists also had to train in oncology. I remember because, at the time I was working in a hematology research lab and my supervisor was busy studying for her oncology boards. And she'd been a board-certified hematologist for 15 years at that point.
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Old 08-29-2008, 03:03 PM
 
Location: Beautiful Upstate NY!
12,252 posts, read 17,151,423 times
Reputation: 5668
Thanks, Viral. It sounds like were on the right path, specialist-speaking. A quick check of the Hydroxyurea finds no major adverse side effects. Is this a chemo-therapy drug?
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