1. < Blood Cancers & Disorders

Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!

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ger63 | @ger63 | Jun 11, 2023

I have been on Hydrea for almost 3 years. My platelets are down. I am not aware of my ferritin levels. I will inquire at my next MD visit.

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Rhonda Gregory | @rjgregory440 | Jun 12, 2023
In reply to @tokyolin "Thank you for sharing. It helps me a lot. Another question: Does anyone have high Ferritin..." + (show)
@tokyolin

Thank you for sharing. It helps me a lot. Another question: Does anyone have high Ferritin levels along with the high platelet count? I can't seem to get an answer from my doctor. I have been on H.U. for about 2 l/2 months, and the platelet count is starting to come down, but not the Ferritin.

Linda

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"If a ferritin test shows higher than normal levels, it could indicate that you have a condition that causes your body to store too much iron. It could also point to liver disease, rheumatoid arthritis, other inflammatory conditions or hyperthyroidism.Dec 28, 2021
https://www.mayoclinic.org › about
Ferritin test - Mayo Clinic"
I would suggest you see your primary care physician about that particular test result.

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1 reply
nohrt4me | @nohrt4me | Jun 12, 2023
In reply to @rjgregory440 ""If a ferritin test shows higher than normal levels, it could indicate that you have a..." + (show)
@rjgregory440

"If a ferritin test shows higher than normal levels, it could indicate that you have a condition that causes your body to store too much iron. It could also point to liver disease, rheumatoid arthritis, other inflammatory conditions or hyperthyroidism.Dec 28, 2021
https://www.mayoclinic.org › about
Ferritin test - Mayo Clinic"
I would suggest you see your primary care physician about that particular test result.

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Re ferritin levels. Is elevated ferritin a common and related to ET? I am not being tested for it, but the discussion drew my attention because I developed a benign goiter a couple of years ago. Came out of the blue and family doc has dismissed it as nothing to worry about after doing a needle biopsy yearly ultrasound and initial thyroid function tests. Not everything is related to ET, but wondering if it's worthwhile pushing for further tests.

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2 replies
Rhonda Gregory | @rjgregory440 | Jun 12, 2023
In reply to @nohrt4me "Re ferritin levels. Is elevated ferritin a common and related to ET? I am not being..." + (show)
@nohrt4me

Re ferritin levels. Is elevated ferritin a common and related to ET? I am not being tested for it, but the discussion drew my attention because I developed a benign goiter a couple of years ago. Came out of the blue and family doc has dismissed it as nothing to worry about after doing a needle biopsy yearly ultrasound and initial thyroid function tests. Not everything is related to ET, but wondering if it's worthwhile pushing for further tests.

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Interesting...goiters are usually caused by lack of iodine or thyroid issues. I'm surprised that your family practitioner did not prescribe some kind of treatment. The thyroid controls hormone production and can cause all sorts of problems.

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jewelfaux | @jewelfaux | Jun 13, 2023
In reply to @ortho3 "By blood test or bone marrow biopsy? You are in a good place to get information..." + (show)
@ortho3

By blood test or bone marrow biopsy? You are in a good place to get information about it.

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Does it make a difference whether a blood test or bone marrow biopsy was done? I never had a bone marrow biopsy. My ET, JAK2 617 was determined through genetic blood tests. Is a bone marrow biopsy always necessary? I have been on 1500mg hydroxyurea and 325mg of aspirin daily.

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3 replies
ger63 | @ger63 | Jun 13, 2023
In reply to @jewelfaux "Does it make a difference whether a blood test or bone marrow biopsy was done? I..." + (show)
@jewelfaux

Does it make a difference whether a blood test or bone marrow biopsy was done? I never had a bone marrow biopsy. My ET, JAK2 617 was determined through genetic blood tests. Is a bone marrow biopsy always necessary? I have been on 1500mg hydroxyurea and 325mg of aspirin daily.

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I am not an expert, but I would think a BM bx would allow the practitioner to evaluate other conditions such as myelofibrosis and the condition of your bone marrow. I would follow up with your oncologist/hematologist regarding this.

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1 reply
jewelfaux | @jewelfaux | Jun 13, 2023
In reply to @ger63 "I am not an expert, but I would think a BM bx would allow the practitioner..." + (show)
@ger63

I am not an expert, but I would think a BM bx would allow the practitioner to evaluate other conditions such as myelofibrosis and the condition of your bone marrow. I would follow up with your oncologist/hematologist regarding this.

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I shall ask my oncologist.

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bevjg | @bevjg | Jun 13, 2023

I am amazed at the amount of HU some people are taking. I take 500 mg daily…. My platelets peaked at 800,000. Once on HU they have dropped to 275,000 and are stable. I am also JAK2 positive.

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2 replies
ortho3 | @ortho3 | Jun 13, 2023
In reply to @jewelfaux "Does it make a difference whether a blood test or bone marrow biopsy was done? I..." + (show)
@jewelfaux

Does it make a difference whether a blood test or bone marrow biopsy was done? I never had a bone marrow biopsy. My ET, JAK2 617 was determined through genetic blood tests. Is a bone marrow biopsy always necessary? I have been on 1500mg hydroxyurea and 325mg of aspirin daily.

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I guess it depends on the hematologist/oncologist’s experience. I was never offered the option - I requested it. It didn’t make a difference to treatment, but it did rule out advancing myelofibrosis.

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jola13 | @jola13 | Jun 13, 2023
In reply to @ortho3 "By blood test or bone marrow biopsy? You are in a good place to get information..." + (show)
@ortho3

By blood test or bone marrow biopsy? You are in a good place to get information about it.

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2 bone marrow tests

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