Essential Thrombocytosis General Questions

Diagnosis first; a million questions second!

We've all been there.

There is tons of information available, some helpful, some questionable.

I have found this forum to be the best source of true answers.

You will learn so much by reading through all the existing conversations on ET. You'll gain the perspective of real-life experiences, as well as links to the latest research.

To get started, just use the search bar at the top of this page! You are right, knowledge is power.

@janemc are there trials ongoing for ET? I have not seen any info on research?

@sdcgcarroll Sadly, you will not find a comprehensive list of symptoms and side effects because they vary widely from person to person. The most serious are clots or, in cases with platelets over 1,000, bleeding. Sometimes enlarged spleen. Meds are given to ward these off.

I'd say about half the people here have no symptoms or mild fatigue. The rest have intermittent headaches, bone pain, more severe fatigue, erythromelalgia, dizziness, or tingles in extremities. Among others.

ET is very poorly understood and understudied by research. Imo, brain fog and depression and kidney disease associated with blood cancers needs to be studied more in ET patients.

Symptoms sometimes come on with starting hydroxyurea. The meds get blamed, but it may be that the HU is being given because platelets are going up and it's ultimately the higher platelets that cause the symptoms. But no one knows.

HU alleviates symptoms for some. In others it causes diarrhea or constipation. It can also cause hair thinning and black stripes in nails. Too much causes bone pain. You'll hear lots of other complaints about it, too, and the FDA has a list of side effects a mile long.

I suspect there are psychological factors involved in HU resistance; nobody likes the idea of taking a chemo pill for life or of having an incurable blood disease. But I'm not a shrink.

Meds for ET:
--Aspirin to thin blood
--HU or anagrelide to reduce platelets
--Besremi or Pegasys injections if you can afford them and are under 40 or 50 reduce platelets and MAY lead to remission
--Jakafi is expensive and is used infrequently

ET gets far less attention than other ailments that hematology oncologists see. Most of us are middle-aged or elderly, ambulatory, we don't look or act sick, and our disease is advancing so slowly that probably something else will kill us. When a busy doc has to triage his time between us and the teenager down the hall with acute leukemia, guess who's going to get the most attention?

@nohrt4me I’m only taking a baby aspirin a day for my ET and I am generally a very active person. My fatigue is ridiculous however and becoming life altering. I’m in a semi angry phase because I have lots of things I want to do and no energy to do them. It’s frustrating to me.

I had fatigue initially but after being on hydroxyurea for 6 months (500 mg day) and platelets in 450 to 550 range, I am no longer feeling fatigued. I do walk everyday and take care of my large yard and house. At age 86, I am pretty happy with how I feel. I do take baby aspirin and was diagnosed over a year ago with Jak2 mutation. My doctor does not refer to my ET as "cancer."

@sdcgcarroll Sadly, you will not find a comprehensive list of symptoms and side effects because they vary widely from person to person. The most serious are clots or, in cases with platelets over 1,000, bleeding. Sometimes enlarged spleen. Meds are given to ward these off.

I'd say about half the people here have no symptoms or mild fatigue. The rest have intermittent headaches, bone pain, more severe fatigue, erythromelalgia, dizziness, or tingles in extremities. Among others.

ET is very poorly understood and understudied by research. Imo, brain fog and depression and kidney disease associated with blood cancers needs to be studied more in ET patients.

Symptoms sometimes come on with starting hydroxyurea. The meds get blamed, but it may be that the HU is being given because platelets are going up and it's ultimately the higher platelets that cause the symptoms. But no one knows.

HU alleviates symptoms for some. In others it causes diarrhea or constipation. It can also cause hair thinning and black stripes in nails. Too much causes bone pain. You'll hear lots of other complaints about it, too, and the FDA has a list of side effects a mile long.

I suspect there are psychological factors involved in HU resistance; nobody likes the idea of taking a chemo pill for life or of having an incurable blood disease. But I'm not a shrink.

Meds for ET:
--Aspirin to thin blood
--HU or anagrelide to reduce platelets
--Besremi or Pegasys injections if you can afford them and are under 40 or 50 reduce platelets and MAY lead to remission
--Jakafi is expensive and is used infrequently

ET gets far less attention than other ailments that hematology oncologists see. Most of us are middle-aged or elderly, ambulatory, we don't look or act sick, and our disease is advancing so slowly that probably something else will kill us. When a busy doc has to triage his time between us and the teenager down the hall with acute leukemia, guess who's going to get the most attention?

I just wanted to add that I also take 5mg Apixaban (Eloquis) twice a day instead of the Aspirin. Thought if we wanted to see all the possible medications that maybe this could be added to the list.

(I believe I was switched because of a couple of issues....1. I had a small stroke that caused my right side to temporarily go numb and 2. I went into AFib for a period of 12 hours when in hospital suffering from Pericarditis. These happened a year apart....I was diagnosed with ET (MPL mutation) after the stroke. ))