Jak 2 Positive with Elevated Platelets: What symptoms do you have?

I take 500mg of hydrea and yes i'm always tired but my doctor blamed in on my age...No one ever listens to the patient.....

Fatigue is a common symptom with all forms of Leukemia and MDS or MPN disorders. Hydrea is designed to reduce your platelet count. The JAK2 mutation is common in many MDS and MPN disorders. I have MDS/MPN-RS-T which is an overlap disease consisting of MDS, MPN and Myelofibrosis (lucky me). I’m also taking Hydrea and I get monthly labs at Sloan. I get fatigued and have to nap for about an hour every afternoon. These diseases usually occur in adults over 60 so age plays a role but fatigue is common for most patients.

I started on black seed oil, soursop tea and astazanthin all natural products and my numbers are back down to normal. Praise God

My first HU prescription arrived in the mail today. It has NO directions on how to take it: with or without food, what time of day is best? I would appreciate any suggestions. Thank you.

My Hydroxyurea came with paperwork to take it with a full glass of water with or without food, My hematologist suggested half hour before or after eating.
I take it in the morning but it is your choice. If you go on Chemocare.com you can print or view a lot of information on Hydroxyurea.

The information sheet said to aim for minimum 64 ounces of fluid daily to flush the toxic effect.

Eileen

I am interested in why you are taking these supplements. Does black seed oil come in capsules? Where do you get soursop soup?

Eileen

Have you been able to start on a lower dose of Hydroxyurea? 500 mg seems to be more of a standard starting dose, and then move up in strength if needed.

They are known to fight cancer. I take organic liquid black seed oil and the soursop you can find on amazon and make tea.

Still taking 1000mg after a blood count - platelets still elevated - fatigue seems to have decreased. Have BMB scheduled for Tuesday, not particularly excited about it!!

Do you also take Hydroxyuria?