Essential Thrombocythemia: Making treatment decisions

I was diagnosed with ET in 1992 and took it for about 5 years. I had no problem with it. Doctor switched my medication to agrylin (sp) because it was supposed to be less harmful. It gave me flu symptoms. I chose to stop taking both meds. For some reason, my platelets stayed around 3000-4,000 up until April 2025. I was just diagnosed with Myelofibrosis and am positive my DNA changed due to high stress for 5 years. I can’t get over the fact, I did this to myself. Wishing you the very best. I wish I could go back 5 years! BTW my platelets when diagnosed were 1,500,000.

I was diagnosed with ET around 2002 and it transitioned to myelofibrosis 10 years ago. I've been on hydrea since 2002 with a brief stint on jakafi from a new onc and my Mayo onc said no way. Other than being tired and occasionally throwing up I still survive. I barely eat anything but I'm getting fat.

@rivieramaya2009 It makes me really sad when I hear people blaming themselves for being sick with these diseases. Please don't beat yourself up. We cannot control all the stress that life hands us or whatever in our make up makes us prone to these genetic mutations. And we have to rely on docs for advice on treatment, and sometimes that's hit or miss. You deserve to do something really nice for yourself today. Report back what you did so we can all try it!

@jsmedsrud MF is certainly a tricky disease! I’m never hungry, eat 3 meals a day so I don’t lose weight. Try my best not to eat any sugar and don’t eat a lot of carbs, because they make “C” grow. I’m fatigued, like you and just feel unwell—stomach and headaches most of the time. I’m encouraged to know you’ve had MF for ten years. Do you mind me asking your age? I’m 75 and remain active even though it’s difficult to exercise— Pilates 3 times a week and I walk 2 miles 3 or 4 times a week. Nice to touch base with you. MF is so rare—it’s nice to meet you! Susan

Started HU in May 2025 had a few side effects so far none long term. Some days I get really tired around 4:00pm other days not depending on what I do. No hair loss even though my hair has more gray than before. At first my tongue would burn that left after a couple weeks. Skin is dryer sometimes my leg calf burn and feet burn. I read some where that it will cause old skin damage to show up so I am noticing lots more age spots on my army and legs. But none of this is bad. Some of the things leave and return. I also read and Doctor told me be careful in the sun when taking HU because you will burn found that out after 2 days of taking the HU. Oh by they way I am 71 so some of this could be due to my age not sure. Hope this is not to long for you this web sight has been a blessing .
Good Luck

@rivieramaya2009 No one wants to be sick. This is not your fault! You are in good company here, so rest assured no one here blames you for anything. We support your journey because we are on the same road!

@vickieannb57 interesting what you said about age spots on your legs—me too. Many more in the past 6 months. Please tell me what HU is? Do you try to watch sugar and carbs? Nice to connect with you. Have a nice day.

I have been taking Hydroxyurea for over 1 year. Started taking 1000mg daily and experienced horrifying night sweats and mouth sores. My hematologist decreased dosage to 500 mg daily and the side effects were much easier to deal with. I now take 500 mg every other day and life is good. There's no side effects and platelets are around 500. I'm 72 years old so in a higher risk category, but I think Hydroxyurea is great. Good luck to you.

@rivieramaya2009
It is Hydroxyurea this is a chemo drug from the 1960. I take it for the Jake 2 mutation which is high platelets. The Doctor warned me to use sunscreen as this drug caused previous sun damage to come out. I figured that is the age spots . Hope this helps my platelets were down to 291 at last blood check. Oh and no I eat what I want . Guess I should diet my Doctor said this is not cancer but there is no cure . Good Luck

@jsmedsrud sooo many symptoms with MF. I was diagnosed with MF after 33 years with ET. On Hydra for maybe 4 years—no bad effects and felt fine until April 2025. Have mild headaches, very tired sometimes, cold feet, stomach aches, and have to eat a lot to keep from losing weight. And you don’t eat a lot and gain weight? So you’re onHydrea , with MF to lower your platelets? My platelets last month were 583,000. Hemoglobin 10. Wishing you well!!