I've had ET for 15 years. I am 70 with ET-CALR. I felt less fatigue on HU, but it hits different people in different ways. If your husband's blood levels are good, ask the doc if he can lower the HU dosage?

Eating problems may be due to enlarged spleen that goes along with this family of diseases. Ask doc about this?

There's a fair amount of energy drain when a body is constantly trying to crank out unnecessary blood cells, filter them, and also filter the chemo. Learning to live with lower energy levels is part of the landscape.

There is also sometimes some low-level but constant depression that go along on with a chronic illness. That can sap energy levels also. I retired and my mom died, the same time I started HU. Took me five years to come out of that funk. Doctors are very poor at addressing the mental health angle. One told me I should just feel lucky not to have full-blown leukemia. But you could try to discuss with doc.

It is helpful for me that my husband understands he is not getting his high-energy wife back. He accepts that this is a forever situation, and we try to stay focused on the new normal and enjoy the life we have. This can be really hard for friends and caregivers, so am glad you have taken this step to talk to others in this situation.

Best of luck with the doctor visit!