Essential Thrombocythemia: Looking for information and support

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

Cuales fueron tus nuevas opciones y quería saber si bajaron tus plaquetas

Welcome to Connect, @jlore. Hydrea is a good first line medication for blood conditions such as ET. It’s been used for decades to help control over production of platelets such as you’re experiencing. I hope this works well to reduce your numbers. You mentioned there is another medication that you’d prefer but it isn’t recognized. Could you share what it is please?