Is Essential Thrombocythemia a blood disease or cancer?

Posted by chimo @chimo, Mar 21 12:47pm

I’m confused because I think Hydroxyurea is a chemo drug. Can someone clarify this for me?

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@1pearl

Honestly, I really do not think my O/H knows if I have ET or Myelofibrosis. I do have something as I have high platelets but no symptoms and no underlying medical conditions. I feel very blessed after reading about so many symptoms others with MPNs have.

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I never had any symptoms, just every year my platelets went higher for 3 years in a row. The best diagnosis is a bone marrow biopsy and bone marrow aspiration. There are many sub-groups under MPN (myeloproliferative neoplasm) I would suggest you go to a MPN specialist usually a major medical/teaching hospital. You need to get a second opinion if your O/H doesn't know, and even if they know it is good to get a second opinion. My oncologist said platelet counts can vary from morning to night, but if the trend is going up, over normal range good to get that second opinion. Elevated platelets can result in heart attack or stroke as they form clots, not a good thing. I found the Leukemia Lymphoma Society website and excellent webside for information.

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Hydroxyurea (HU) is a chemo drug used as first line of defense for ET. Don't be afraid of the words "cancer or chemo".....be more afraid of stroke or heart attack.

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@1995victoria

Hydroxyurea (HU) is a chemo drug used as first line of defense for ET. Don't be afraid of the words "cancer or chemo".....be more afraid of stroke or heart attack.

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I am not afraid of either as my BP is low, like average 115/65 daily for which I measure each morning and I have no other risk factors either. I suppose docs want someone 65 to have something though. I am 65 years young and did not realize that made me “old”!

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@1pearl

I am not afraid of either as my BP is low, like average 115/65 daily for which I measure each morning and I have no other risk factors either. I suppose docs want someone 65 to have something though. I am 65 years young and did not realize that made me “old”!

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I too was fit with exercise and no symptoms, BP 115/75 and then bang….blood clot caused a mild stroke!

I was lucky…the numbness on my whole right side only lasted about 15 minutes, and then recurred over the next week in my hand and wrist causing me to not be able to raise my arm while doing exercise with hand weights, or to lift a spoon to eat my cereal, so I finally went to the hospital. I should have gone after the first episode. But I was in denial that anything was really wrong. But it was. I ended up having surgery to remove a large blood clot from my carotid artery.

Not to scare you, but just a warning.

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@1pearl

I am not afraid of either as my BP is low, like average 115/65 daily for which I measure each morning and I have no other risk factors either. I suppose docs want someone 65 to have something though. I am 65 years young and did not realize that made me “old”!

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Low BP doesn't protect against heart attack or stroke when you have elevated platelets. The platelets are sticky and form clots that could travel to your heart, lungs or brain. I also have low BP. But you can decide on your own risk.....I'm significantly older than you and have been on HU for 3+ years now.

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@kapow

I too was fit with exercise and no symptoms, BP 115/75 and then bang….blood clot caused a mild stroke!

I was lucky…the numbness on my whole right side only lasted about 15 minutes, and then recurred over the next week in my hand and wrist causing me to not be able to raise my arm while doing exercise with hand weights, or to lift a spoon to eat my cereal, so I finally went to the hospital. I should have gone after the first episode. But I was in denial that anything was really wrong. But it was. I ended up having surgery to remove a large blood clot from my carotid artery.

Not to scare you, but just a warning.

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Yes, since I have high platelets I do take a baby aspirin daily now since my O/H decide my Von Willebrand factors are now normal.

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@1995victoria

Low BP doesn't protect against heart attack or stroke when you have elevated platelets. The platelets are sticky and form clots that could travel to your heart, lungs or brain. I also have low BP. But you can decide on your own risk.....I'm significantly older than you and have been on HU for 3+ years now.

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Thank you for your concern and it is true that high platelets have elevated risk of stroke and heart attack even with normal or low BP. I do take baby aspirin now because I have high platelets.

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@nohrt4me

Hemo oncologists in the US have differing opinions about what ET is and how to treat it. Most offer minimal info to patients. This accounts for differing understanding among ET patients and misinformation or conflicting info among patients.

My understanding is that HU only lowers platelet production and thereby helps prevents strokes, clots, and spleen enlargement. It may also reduce effects on liver and kidneys, but I'm fuzzy on that. More ET patients would take Besremi if they could afford it. It is used way more widely in Europe, especially in patients under 40.

Not nearly enough hemos counsel ET patients about how diet and exercise can reduce overall stroke risk or relieve fatigue or other symptoms. And they don't do a great job talking about progression, increased risks of sun exposure, or decreased immunity.

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Can you please be a little more specific about how sun exposure effects platelet level.
I was concerned about the sun causing inflammation and higher platelet levels since I was going on vacation to a warm climate for a week. My MPN specialist said doesn't affect platelet level. Maybe she said that because it was not for a long period of time.
Thank you

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@1pearl

Yes, since I have high platelets I do take a baby aspirin daily now since my O/H decide my Von Willebrand factors are now normal.

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I also take a baby aspirin daily,

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@phorowitz111

Can you please be a little more specific about how sun exposure effects platelet level.
I was concerned about the sun causing inflammation and higher platelet levels since I was going on vacation to a warm climate for a week. My MPN specialist said doesn't affect platelet level. Maybe she said that because it was not for a long period of time.
Thank you

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Sunlight doesn't affect platelets. If you take HU, you have an increased risk of skin cancer with sun exposure. My pharma told me to buy a good sunscreen with my first prescription. I keep a bottle in my purse. I also carry a hat and lightweight long sleeve shirt in summer. I think a parasol would be fun!

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