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Essential Thrombocythemia: Looking for information and support
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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Did your family doctor do the needle biopsy?
I also had a benign goiter and non malignant nodules. I see an excellent endocrinologist. I do have thyroid labs done also, Each time I go he personally does an ultrasound and compares it to the previous ultrasound. Last time he said to come back in two years. When I see him next I will bring up the subject of ET JAK2 and Hydroxyurea.
Eileen
Two things on dosing:
1. Some doctors, especially in the past, have given big amounts of HU because platelets are very high. This happens less often because patients do better if they start on lower doses.
2. Patients do not respond the same way to HU. It takes bigger doses to get some patients into acceptable levels. More research is needed here that might offer better dosing guidelines, but the time, energy, and $$$ seems to go toward new drug research, even though many patients can't afford new drugs.
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1 Reaction2 bone marrow tests
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1 ReactionI 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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1 ReactionI 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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3 ReactionsI shall ask my oncologist.
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1 ReactionI 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 ReactionDoes 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.
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.
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.