Elevated platelets and enlarged spleen

Posted by luzbellas @lizbellas, Feb 21, 2023

Hello all. I recently had some blood work and it was confirmed that my platelets were up from 300, 485, 519 to now 689. My oncologist ordered a CT scan of abdomen and pelvis and it came back that my spleen was 13.6 cm which it double the normal size. All my other bloodwork is normal. I am scheduled for a bone biopsy in 2 weeks. My hemotologist/oncologist thinks I have ET. My platelets showed no abnormalities in morphology. If put on medication, will spleen return to normal size?

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Wish I had the answers; (PV and MF) lizbellas @lizbellas, I have high everything except for anemia (medication didn't help me and went through my first phlebotomy) I hear about removing the spleen.(???) My liver and spleen are doubled in size (born with 1/2 spleen size so it grow to normal size now 14.2 but liver is 22.5) My platelet was 700 and phlebotomy help 300 but numbers are creepy again up and doctors love to do blood test every time I go in https://www.verywellhealth.com/splenomegaly-enlarged-speen-4068974
HUGS! HOPE YOU FIND ANSWERS> WE ARE ALL PRAYING FOR YOU! Please keep us up-dated

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Googled; What is an enlarged spleen? An enlarged spleen is characterized as one that is larger than 12 cm (approximately 5 inches) in length or over 400 grams (approximately 14 ounces) in weight. Splenomegaly usually occurs as a result of secondary causes rather than primary diseases of the spleen and is considered a rare condition, but can affect anyone. What causes splenomegaly? The largest spleen ever recorded has been removed from a man in Florida, with the organ weighing almost 27 pounds—more than 12 percent of his total body weight and 8,800 percent larger than an average spleen. The patient was a 44-year-old man with a history of a low grade B-cell lymphoproliferative disorder.

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I have ET, spleen is normal, but it is a side effect of ET. Serms like the doc told me that about a third of ET patients have splenamegaly.

My dad also had ET, did have an enlarged spleen, with platelets over 1 million. His spleen did reduce in size when he went on hydroxy. Does that happen for everybody on hydroxy? I don't know, so good to ask your doc.

Curious about how the doc determined that your platelets had no abnormalities? Usually they do a bone marrow biopsy to determine whether any platelets are malformed. Along with nice round platelets, they'll see some that have a strange spiky shape.

The diagnostic gold standard now seems to be the spiky platelets plus a positive test for JAK2, CALR, or MPL gene mutations.

This is all nerve-racking for you, I know. I have had ET for 13 years, on aspirin, then on hydroxy for the past 5, am 68 and doing OK. Tired some. Sometimes migraine type auras, but not often. Dad lived to be 82 and died of something else. He did have to be careful of clotting though.

Depending on yr age, you could ask your doc if Pegasys would be a better drug for you. It's very expensive and insurance doesn't always pay.

Take care!

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Thank you all for the encouragement and shared stories. I’m freaking out. My whole life I thought I was sick and now finally I am facing ET. Mother dies of stomach cancer, father died of alcoholism. I just want to be a good person and live long enough to see my kids grow up. I a little bit of a hypochondriac, I pray for everyone in this thread a happy and healthy life. God bless you.

I will post another question in the coming days. Thanks again for the responses.

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@lizbellas

Thank you all for the encouragement and shared stories. I’m freaking out. My whole life I thought I was sick and now finally I am facing ET. Mother dies of stomach cancer, father died of alcoholism. I just want to be a good person and live long enough to see my kids grow up. I a little bit of a hypochondriac, I pray for everyone in this thread a happy and healthy life. God bless you.

I will post another question in the coming days. Thanks again for the responses.

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@lizbellas, do you have a diagnosis?

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