Support Groups

Blood Cancers & Disorders Support Group

Public Support Group
237 total results
Discussion
Does anyone else have more than one myeloproliferative disorder?
Hello. I am new to this group and looking to connect with fellow members who are dealing with MPD. I have Essential Thrombocythemia as well...
Last active: Dec 19, 2022
Discussion
Could erythritol be adding to my platelet count?
I have essential thrombocythemia. I use liquid coffee creamer that contains erythritol. Could this be increasing my platelet count?
Last active: Mar 2, 2023
Discussion
Myeloproliferative neoplasm Anyone else have a similar diagnoses?
Bone marrow consistent with a myeloproliferative neoplasm and the differential includes essential thrombocythemia and primary myelofibrosis. MPL mutation testing is positive. No sustainable iron in...
Last active: Feb 7, 2023
Discussion
How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?
I was diagnosed with Essential Thrombocythemia last November and am on Hydroxyurea 1500mg daily in an effort to reduce my platelet count, still in 9000s....
Last active: Mar 29 8:26pm
Discussion
New dx of Post ET-MF
Hi, I was diagnosis with post essential thrombocythemia myelofibrosis 5 weeks ago. I am classified as low risk, with my age of 62 being the...
Last active: Oct 7, 2019
Discussion
I’ve had essential thrombocythaemia for 23 years now,and thyroid issue
I’ve had this disease for 23 years now,have taken Anagrelide,hydroxides,but now I’m injecting with Peg-interferon 90mcg weekly and it’s keeping my platelets stable,over the last...
Last active: Jun 9 11:45am
Discussion
Anyone experienced Bone Marrow Transplant with TP53 mutation?
After 10 healthy years, living with Essential Thrombocythemia w/JAK2 mutation and taking Hydroxyurea, my blood disease has transitioned into Myelofibrosis. I'm now taking Jakafi for...
Last active: May 9 4:42pm
Discussion
Needing help understanding ET and how it affects my life
I’m 28 and have not been formally diagnosed with Essential Thrombocythemia, but my platelet counts have been consistently high since I was at least 16...
Last active: Oct 29, 2023
Discussion
Soft-Tissue Masses Not Diagnosed
We all know when we’re sick, right? Well, I’m sick, but I can’t get a diagnosis of my illness. My symptoms have been going on...
Last active: Aug 23, 2023
Discussion
Getting rid of oral thrush: What works?
My mum has had essential thrombocythamia which has now progressed to myelofibrosis. Following a period where she's been very ill she has had the most...
Last active: Sep 3 9:49am