Support Groups

Blood Cancers & Disorders Support Group

Lock icon Public Support Group
Clear Search
316 total results
Discussions (39)
Essential Thrombocythemia
Hello, I would like to know if there are any non-hormonal treatment options for a 52-year-old woman with essential thrombocythemia? It is so hard to...
Last active: Jul 12, 2025
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
Essential Thrombocythemia and relationship to stroke
I have been reading posts and haven't seen any which address the relationship of ET and stroke. I have had TIAs and was hospitalized for...
Last active: May 9, 2024
Essential Thrombocythemia treatment with Besremi
At my last appointment with my haematologist 2 weeks ago, he gave me the choice of starting HU or Besremi injections every two weeks. After...
Last active: Sep 1, 2025
Polycythemia Vera or Essential Thrombocythemia ?
My wife, Pam had a follow-up appt on Friday, due to extreme weather and bad roads, it was rescheduled to afternoon. We repeatedly asked about...
Last active: Jun 3, 2024
Finding a specialist for Essential Thrombocythemia
Hi there. My husband has "pure" ET (which I'm assuming means it is from a genetic flaw, but I really don't know) and has been...
Last active: Sep 7, 2024
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
Is Essential Thrombocythemia a blood disease or cancer?
I’m confused because I think Hydroxyurea is a chemo drug. Can someone clarify this for me?
Last active: Dec 29, 2025
Essential thrombocythemia: Interested in connecting with others
I am interested in connecting with others with this illness. I was diagnosed this summer with ET and have been to see two hematologists here...
Last active: Sep 25, 2025
Nutrition for Essential thrombocythemia (ET) diagnosis
Hello,Newly diagnosed with Jak2 ET. Started Hydrea and 81 mg aspirin. Very low iron levels.Has anyone come across a specific diet recommendation to accompany this...
Last active: Oct 13, 2025
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,...
Last active: Dec 23, 2025
Essential Thrombocythemia: Making treatment decisions
I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a...
Last active: 1 day ago
Essential Thrombocythemia, anemia and Celiac Disease, the Trifecta
I learned I had ET through a routine blood test during my annual Medicare checkup last fall. Since then I have found I have the...
Last active: Mar 25, 2023
Essential Thrombocythemia (ET): foods, diet, nutrition?
Hello, My name is Isabelle, I’m 55 and I was diagnosed a month ago with Essential Thrombocythemia, JAK2 mutation. I’m waiting on my bone marrow...
Last active: Jun 4, 2025
Husband has Essential Thrombocythemia (ET) & MCI
My husband has both, some days good, some not so much. ET is managed with hydra & aspirin MCI is a learning curve for me...
Support Group: Caregivers: Dementia
Last active: Jul 7, 2021
Does Essential Thrombocythemia cause hip pain?
Does Essential Thrombocythemia cause hip pain? My hips have been hurting for days.
Last active: Feb 8, 2024
Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia
Does anyone on this site have pre-fibrotic pm or know where I can get some good information. I am still a week away from a...
Last active: Aug 13, 2025
Is it okay to take B12 with essential thrombocythemia (ET)?
I have ET and JAK2 mutation. Is it ok to take B12 for the tingling in my feet?
Last active: Jan 4, 2025
Essential thrombocythemia (ET): When to start hydroxyurea (HU)?
I was just diagnosed with ET. I am 61 years old. My platelet count is 640k right now.Doctor suggested I take a baby aspirin everyday...
Last active: Nov 18, 2025