Hi, diagnosed with ET (CALR) mutation ) age 60, but onset about age 55. My dad also had ET. He died at 82 of unrelated COPD. I am 70 now, and I take daily oral chemo (hydroxyurea) to keep platelets in 400s. I tolerate the hydroxy very well. Most people do.

Fatigue/stamina is sometimes a problem, but my teeth (ugh, crowns), scoliosis, and hearing are bigger daily quality of life problems than the ET.

Allele fraction estimates how many of your cells carry the mutation. A bone marrow biopsy will show the degree of fibrosis in the marrow, if any. When I was diagnosed, researchers were not sure how any of that might be important, but it might be helpful down the road as more is known about MPNs.

Best questions:

1. What are the treatment goals for ET?

2. What meds do I need to control the ET now or in the future?

3. How often will I need blood checks and appointments with a hemo?

4. Are there any "danger sign" symptoms should I report to you?

5. What is my long-term prognosis?

6. Do you recommend any diet/exercise changes?

Write these q's down, let the doc give his spiel, take notes, and ask if the above are not covered after the spiel.

Since yr doc is moving, ask whom he would recommend that you see and ask if his office can arrange that.

Breathe, breathe, breathe. Chances are you will live long and prosper!