Good morning, @onthejoedock. These are lovely photos of your handsome husband…so active and vital. But the latter photos certainly tell the story of how things have changed with his health. It is sad when we see our loved ones go through a life altering experience. It can be difficult to cope with for both of you.

I’m a little confused though as to whether your husband has PV, which is a blood condition where the marrow is producing too many red blood cells. Or if he has ET (essential thrombocythemia) which is a condition where there is an over production of platelets. You focused on his platelets. Was his hemoglobin high as well?

Both conditions are treated similarly with hydroxyurea or Jakafi with the goal being to help the body regain a normal production of the excess blood cells.

You also mentioned that his platelets are “still over 350”. (350,000) That’s actually well within in the normal range for adults…normal being 150,000 to 450,000.
So if the focus on taking Jakafi was to lower his platelets that has worked very well for him.
But it will also lower his red blood counts which can lead to fatigue and being easily winded because there is a reduced amount of oxygen being distributed throughout his body. That would explain why he gets worn out so quickly. It’s a horrible feeling and no matter how hard he tries to push himself it will just end in frustration because he may not have enough red blood cells. (Think anemia)

If he has ET, since his platelets are now normal, he may want to check with his doctor about potentially lowering the dosage of Jakafi. There are a number of members in this group who have PV or ET and when stabilized, they’ve been able to reduce their dosages, such as 1 tab daily instead of 2. Or, alternate between 2/1 every other day. That may make a difference in your husband’s fatigue and lethargy.

While nutrition is important for his overall health and wellbeing unfortunately, when there is a mutation causing a blood condition such as PV or ET, a dietary solution won’t reverse this myeloproliferative disorder.

I’d encourage you and your husband to talk this over with his doctor about possibly adjusting a dosage to see if it might make a difference for him. What is his current hemaglobin reading?

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!