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

WARNING!

 

This is going to be something of a whiny post…turn back now if you don’t wish to read my griping.

 

Ok…but don’t say I didn’t warn you…

 

Yesterday (Wednesday) I had my 7th migraine in 2 months. The pain in my head was severe, as usual, and it started the way it usually does, with the aura and general weird feeling. But this time in addition to the headache/nausea/numbness/auras/sensitivities, I also had EXTREME, all-over body aches. My neck, shoulders, back, hips, knees…you name it hurt. A lot.

 

I realize pain is subjective, but I have always had a rather high pain tolerance so, the fact that the pain in my muscles and joints brought me to tears is really saying something. I have no idea what caused it, but it scared me. There were no positions that didn’t hurt. I tried a heating pad, didn’t help. I tried a hot bath, didn’t help. I tried ibuprofen, didn’t help. The only time I was not in pain…was when I was asleep. Which, I’ll grant you was a lot of the day yesterday…but I haven’t had that kind of pain in a really long time, and I’ve never experienced it during a migraine.

 

It still hasn’t gone away yet, I’m still extremely achy today. My back and hips especially. Perhaps I was sleeping in some weird positions, and that’s what’s causing it now…who knows. But It’s still pretty bad. All day sitting in a terrible chair at work probably hasn’t helped either…

 

Anyway…whining over….

 

In other news, I went to see the vampires today. Had a fairly decent blood draw. Only down side really was she had to dig around for the vein, and did blow thru it…but everything else went smoothly. Hopefully my numbers are looking good 🙂

 

As always, be assertive, proactive and persistent.

 

Lina