I am sorry you are so distressed at your ET diagnosis - and shame on your doctor for not explaining that while this is a life-long disease, people who get diagnosed and treated can live a very long time and will likely die from something else. The bone marrow biopsy will confirm your diagnosis and will allow your doctor to prescribe appropriate medication. I was scared, too, at the initial diagnosis and the prospect of a BMB. The procedure wasn't bad and it helped me tremendously that when I told the nurse practitioner how anxious I was, she ordered a mild sedative to be added to the IV during the procedure.

Have had ET for about 17 years. Doing OK. I also have asthma. MPNs increase histamines, so I take Claratin daily. I do not have many asthma flare-ups, and the albuterol inhaler works fine.

I watch AirNow.gov for ozone and particulate pollution alerts. Hopefully that service will not be chopped with NOAA cutbacks. We were getting some bad days in summer from Canadian wildfires and the site was helpful in forecasting bad days when I might not want to be outside.

You may notice more sensitivity to odors and fragrances over time. I switched to fragrance free stuff, and this helped a lot.

This is not a death sentence, and you will be OK, especially now that you can be treated and monitored.

I was recently diagnosed with ET. Even tho I know that one can live with ET, I have been anxious with my diagnosis also. I’ll meet with my oncologist hematologist tomorrow where I’ll ask more questions and find out what my dosage for Hydrea will be. This is a good place to find out information from others that have been living with ET and their experiences with treatment and medication. This has been helping me plan for possible side effects from the drug. All the best! Margy