1,108 total results
Discussions (73)
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?
Any recommendations for ongoing mild headaches with Hydroxyurea?
Any recommendations for ongoing mild headaches since taking Hydroxyurea (500 mg per day). Trying not to take more drugs Have ET (Jak2) diagnosed August 2022...
BESREMi anyone?
Diagnosed with PV with JAK2 mutation In November. Did not do well on Hydroxyurea. I just started BESREMi at 100mg every 2 weeks. I have...
Lightheadedness, Brain fog, Itchy: Side effects of HU or ET itself?
I am ET/Jak2 — 72 years oldDiagnosed July 2024HU 500mg dailyAre the following symptoms from the HU or ET itself:Lightheaded (feel a bit unbalanced/dizzyBrain fogItchyI...
MGUS with Polycythemia Vera (PV)
Had a bone marrow biopsy done in 2017 and was diagnosed with MGUS. Additional BMBs in 2018 & 2019 showed a slow progression of my...
New - possible Polycythemia vera (PV)
Hi my hematocrit has been high for a few years, and cardiologist suggested it see a hematologist. My pulmonologist did a sleep study and found...
Can high red counts just be normal?
Hi. Is it possible to have 49.6 hct, 16.2 hb and 5.38 rbc (all over top of ranges) and epo of 3.6 (bottom of normal...
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...
ET management, Is anyone here taking Jakafi or Pegasus?
Hello Everyone, I am 69 yo and I have had ET for 21 years. I am triple negative (NO JAK2, CALR, MPL ). I have...
Polycythemia Vera and low iron
I was diagnosed with POLYCYTHEMIA VERA in 2017 at age 57 and shortly thereafter with RA (I am on Rinvoq for RA). I was and...
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...
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...
GI issues after 7 months on Hydroxyurea - What’s next?
My 76-year-old mother (ET, JAK2+) has been on Hydroxyurea (500mg, 3x weekly) for 7 months without prior GI issues. Recently, after resuming this dose following...
Does Hydroxyurea affect kidney function?
I am 79 with a one year diagnosis of ET JAK2. My platelets were slowly rising for several years before diagnosis and my kidney function...
Hydroxyurea side effects lessen over time?
Hello, I’m 56 and was recently diagnosed with PV, Jak2 positive. I was lucky to catch it at the beginning stages from an annual lab...
Polycythemia & Bone marrow Disorders screening
hello everyone good morning And it’s great to talk to you.At the beginning of 2022, I began to feel terrible pain in my stomach. I...
My mom has Polycythemia Vera: Can PV be managed without phlebotomies?
HiMy mom (74) was diagnosed with PV (aug 2024). Hemotologist believes it may have had PV since 2022. She did the Jak2 test and she’s...
Worried about slightly elevated platelet count
My platelets have been at the high end of normal (394 to 399) since 2016. A few weeks ago, they were 401. The doctor retested...
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...
How did you make the final decision to begin HU protocol for ET?
Hi, I continue to research and learn from others with ET. I am 57, and diagnosed this past year. Jak2 positive, ET. I may have...