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Blood Cancers & Disorders Support Group

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Discussions (119)
Lightheaded with ET
Hi everyone. I’m 70, diagnosed with ET in June, 2022, and JAK 2 positive. I’m only taking 2 low-dose aspirin a day because my platelets...
Last active: Apr 22, 2025
Living with ET
I have just recently been diagnosed with JAK 2 positive ET and I am only 48. Coming to terms with the “c” word has been...
Last active: Sep 28, 2025
High LDH with ET?
Awaiting a return message from my chemo after a big spike in my LDH on at my regular blood check this month. All other results...
Last active: Dec 24, 2025
New to Hydrea for ET
I am a 73 year old very active woman who was recently diagnosed with Essential Thrombocythemia by having a high blood platelet in a CBC...
Last active: Jun 19, 2025
Research on ET treatments
I get periodic bulletins via email from Patient Power that track what Big Pharma is researching for MPN patients. Looks like a vaccine approach may...
Last active: Jun 28, 2024
Taking supplements with ET
I have had a diagnoses of ET for 13+ yrs. I started with 1 Hydrea 3X's a week and am now on 500 mg. 3...
Last active: Apr 27, 2024
Spleen involvement in ET
Hello, I am wondering what the symptoms are of beginning spleen involvement in ET. I was dx'd with ET in 2013 . My Internal Medicine...
Last active: Mar 18, 2021
ET symptom of neuropathy
I have been experiencing pain that travels across the top of my left foot. Its a curious location and has become more pronounced, something that...
Last active: Dec 14, 2023
Insomnia & Depression along with ET?
I have ET and the MLP 10 mutation, i'm 55 years old, my platelets are in the low 700's, just diagnosed last week.. I thought...
Last active: Sep 18, 2023
Ongoing effects of ET and drugs
I have been struggling with ET for 18 years now and have found heavy , really heavy exercise helps a lot. I don’t know if...
Last active: Jun 18, 2024
ET - Essential Thrombocythemia & Fainting
What causes fainting, for those of us who have ET? I am concerned and am looking for clarification, in order to better understand what's behind...
Last active: Aug 10, 2020
ET and chemical pre-cautions?
Im 64 got diagnosed with ET about 2 years ago based on blood work (Jak2). My hematologist says I’m textbook ET My count is at...
Last active: Sep 30, 2024
What about no treatment for ET?
Are there any members who are not treating their ET diagnosis?
Last active: Sep 5, 2024
palmar-plantar erythrodysesthesia and ET
Oncology check-up today. Asked about red, hot palms and soles of feet. It's called palmar-plantar erythrodysesthesia (PPE). Yes, patients with ET notice it, but not...
Last active: Nov 22, 2024
fevers from ET or HU
I have had ET JAK2 pos x 2 yr plts around 500 taking 2 baby asa daily. My Plts jumped to 702 and I was...
Last active: Dec 22, 2024
Hair loss with ET and on hydroxyurea
I have ET and am on hydroxyurea 500 ml and aspirin. I have been on it for 2 1/2 years. It has been gradual but...
Last active: Jan 15, 2025
Essential Thrombocythemia (ET) and viruses
I was diagnosed with Essential Thrombocythemia a few months ago, and I’m positive for JAK 2. So far, I have a “mild” case (platelets are...
Last active: Dec 13, 2023
Question for 2025 and ET Patients
Just wondering with regards medication in 2025 and what is being used to control ET in the modern world? Have done a little research and...
Last active: Jul 2, 2025
Shingrex and ET platelet levels
If you of a certain age, and considering having the shingrex vaccine. You might be interested in telling your doctor that the vaccine can drop...
Last active: Oct 22, 2025
ET Jak2 mutation itching
I was diagnosed with ET with Jak2 mutation about eight months ago and I am on hydroxyurea. Some days I am so itchy I feel...
Last active: Mar 17, 2025