Essential Thrombocythemia: Looking for information and support

I totally agree! As long as you are moving around people forgot your disease. I’m 56 and people think all is well since I do not complain. I only been on the Droxia 400 mg. The doctor said everyday but everything was dropping. He mention 200 mg so that why I am taking the 400 mg every other day. I work remote and take my medicine at 6pm. I found I’m not as sleepy through out the day.
I go back for my check up on the 18th of April. I will let the doctor now what I’m doing.
I don’t recommend anyone to make up their own schedule like me. I just have a different process for myself. I discuss it with my husband and 3 grown children after my research.
Just try to affirm yourself daily and do something that gives your heart joy!!!

I found out I had ET with J mutation by doing my yearly physical exam. No proof but it was always around 300 until the COVID shoots.

Haha, I love the "you don't look sick" line. People seem to think that because I seem perky and normal at 1 pm, I can last until midnight. Nope, I'll give you until 6 pm, max, and then I'm going home to crash because my brain is exhausted, I've got the chills or sweats, and I have to will myself just to get out of a chair.

This is the only place I feel understood.

Alas, our "chronic gremlin" is invisible to everyone else.

Totally agree! The lack of empathy is unreal. We look ok so they just to not understand that even though I’m making the best and moving with my life, I do have a chronic gremlin hanging over me. I hear more about their day to day ailments like headaches, muscles aches, etc. when I say something I get oh be happy the hydroxyurea (that I just started taking ) is slowly moving my platelets down. I’m not a complainer but just basic acknowledgement that I’m going thru something bigger than a bread box would be nice just not being dismissed 🤪.

I totally agree.

I think we all have theories about what caused our ET. My onset was age 55. I grew up in a chemical town where they made Agent Orange and napalm back in the pre EPA days. Dad, who also got ET, worked in the plant. My college roommate, who lived a block away from me growing up, died of CMML. Two cousins lived in the same town as kids and later got leukemia.

The VA is looking at putting ET on the presumptive list for soldiers exposed to Agent Orange and Napalm in Vietnam. But it's very hard to pinpoint causes. We all get exposed to a lot of stuff over a lifetime, and it hits some people and not others.

The tendency now is to look for personal behaviors that caused cancer--smoking, drinking, aerosols, diet, inactivity, etc.,--and blame the patient for "poor lifestyle choices." I've learned that the only thing worse than having cancer is having a lack of empathy for people struggling with chronic illness.

I am 78 and have been on hydrea for 7 years. Periodically, The doc and I have adjusted the dose down and up as my red and white blood count drops or my platelets get too high but my count has always remained under 700 and now is in the mid 400's. I have not noticed any significant increase in infections, even after adding Prolia for osteoporosis, which also lowers your count. Healthy diet, walking, avoiding crowds, getting all my vaccinations and masking in places like the supermarket have gotten me through so far. I believe my condition is the result of moving and playing on piles of foundry fill from the local steel mill, which my Dad got free to raise the soil around our house. Back then (1950) no one understood how toxic this material was. I had two brothers who died from multiple sclerosis which I also blame on the toxic metals.

now into my 4th year of HU for ET Jak2. My platelets rose for 3 years before I went to hematologist/oncologist. With HU it took a year of trial/error to get my dosage right and side effects subside plus baby aspirin. While I'm not happy about daily chemo, its better than getting stroke or heart attack. My best advice is get a good MPN Dr take care, stay safe

Thanks for your message. I was diagnosed with ET about 7 years ago at age 70 and prescribed Hydroxyurea which I take daily. My platelet count went from 1600 to 600 which satisfied my doctor and reduced the risk of clots. No other obvious outcomes so far. I hope this helps you deal with this disease for which no cause is known. I have reason to believe that my exposure to chemical weed killers may be a possible cause of the disease.

Según mi hematología es buena pero baja glóbulos rojos y blancos y por eso trae otras enfermedades.Apenas sepa bien el nombre lo paso por aquí.Gracias por su respuesta