Essential Thrombocythemia: Looking for information and support

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.

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 totally agree.

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 🤪.

This is the only place I feel understood.

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

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.

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.

Here is a link that is important to read https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27
It seems difficult at first but keep rereading it and you will have a better understanding.
I have had ET for 21 years and I am also here to give and get support.
look forward to hearing more from you.

I have read somewhere that HU may actually increase the risk of leukemia by a slight degree? Possibly because they use it on patients with JAK? I have been on HU since early 2011 (?) and the Dr. several months ago desired to know if my liver was inflaming; before it has just been about my lymph nodes and ease of bruising. How many years of thrombocytosis does it take before they say that one has ET (no underlying infection nor cancer found)?

What is a tolerable platelet level? Four years CALR, initially 700 level, been over 1 million a couple times, steadily increased hydroxy to 3x1500/4x1000. My platelets run in the 700's, my MCV is increasing and blood counts are decreasing. I take Xarelto and lo dose aspirin. I read so many here struggle to get platelets under 500? later 70's, exercise, eat, etc.