What IS ET?

What IS ET?

You may remember that I started writing my little “What Is…” series MONTHS ago… (what is PV, and what IS an MPN ) and then unfortunately let it fall by the wayside! I’m sorry! Bad, Lina, Bad! Ok…now that that’s over with…I’m going to start this a-new, with “What IS ET?” 

Essential (or primary) Thrombocytosis

Essential (or Primary) – Meaning the disease is not secondary to another problem.

Thrombocytosis(Made up of 3 words) Thrombos – meaning lump or clot

Kytos – meaning cell

And Osis – meaning condition

To sum that up: A condition in which you have too many thrombocytes (aka platelets) in your blood stream.

ET affects mainly the platelets, or clotting factor in your blood. This can lead to a variety of different issues and symptoms including, but not limited to headaches(migraines), dizziness, abdominal pain(due to enlarged spleen or possibly liver) increased risk of blood clots, and stroke, and visual changes or disturbances.

As I have said in the issue before, each of these MPNs can be very difficult to diagnose, as the symptoms can be difficult to pinpoint, and often lend themselves easily to a variety of diseases. I think I will go through and answer the same some of the same questions as in the first entry, applying them to ET.

How are you diagnosed with that disease/condition/thing?

How do they treat it?

When will it be cured?

As with most MPNs, ET can often be discovered after some other event/illness/diagnosis. Regardless of how the disease is initially discovered, there are several criteria that must be present to help verify which MPN you are dealing with. Most commonly diagnosis happens after a series of blood tests; Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), and often Bone Marrow Biopsy (BMB – this is necessary for ET diagnosis). What the doctor is looking for in a CBC is an abnormal increase in platelet counts. (The normal amount of platelets for people to have in their system is 150,000-450,000 so above that is considered abnormal, and docs will probably want to look further) There are several things that can cause high platelets though…infections, trauma, surgeries etc…so a repeat CBC is often tried first, and then a BMB is usually had (At least this is how it was with me). With a BMB your doctor will be looking at bone marrow abnormalities and genetic markers in the marrow.

Treatment for ET varies by patient. Treatment ranges from watch and wait, or pheresis, to prescription medications like Pegylated Interferon, Hydroxyurea or Anagrelide(More common for ET patients, but  PV can take it as well). Pheresis is the process of filtering the blood, basically. You get hooked up to two IV lines, one out, one in, and your blood is sent thru a centrifuge, the excess platelets are spun off, and then the rest of your blood is given back to you.

As for a cure, this is the same as with any MPN. There is no “cure” per se (other than a bone marrow/stem cell transplant…but that is only done for MF patients at this point). The disease can be managed thru treatment, and one can live a normal life with little to no interference from the disease.

 I do not claim to know all there is to know about ANY myeloproliferative neoplasm for that matter…. I am sure that I missed something here, but this is just my general understanding, and the way I would explain it to someone who knew nothing about ET. I would like to take this opportunity to invite ET patients to add to this. Particularly things like “What do you wish you had known at diagnosis that no one told you?”

As always, be your own advocate and be persistent. If you don’t take care of yourself, no one will!

Lina

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4 thoughts on “What IS ET?

  1. Hello, I just wanted to thank you for this very easy to understand way of explaining things. I was diagnosed with ET almost 2 years ago at the age of 23 and I’ve found that people think since I “don’t look sick” ET must not be a big deal.. I’m glad there are people out there, like you, spreading the word. Thanks!

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  2. Hi Lina, the only suggestion I’d make is the “people can usually live a normal life without much symptom trouble”….(or something like that) last line or 2 of your article. My ET is very difficult to live with 😦
    I’m only 44 but feel 100 about 75-90% of each day. Lots of daily symptoms and extreme fatigue make full time work no longer possible etc… I might look “fine” but I’m not feeling fine 😉
    It’s a common definition on most ET sites…wish it wasn’t as it seems to make friends/family/etc.. doubt the patient.

    Thanks for all you do for MPN battlers! Hope you’re battling well today -e 🙂 @ourtaylorstory and @imalotsoflifer on Twitter

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