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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)
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@0612judy

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.

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Replies to "I am 78 and have been on hydrea for 7 years. Periodically, The doc and I..."
nohrt4me | @nohrt4me | Apr 3 9:07am

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.

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