Great advice on that PatientPower post. Very similar to what I do. I go to all appointments with 2 copies of a written agenda. I give one copy to the doc.

Treatment goals
Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach
Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.

Updates/Issues/Questions
Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.

Treatment
Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.

That is very poor communication at a minimum. In fact, it sounds rather disrespectful, as though he expects blind obedience from patients. It would be far more informative and professional to say "There has been a persistent elevation in your blood cell (PLT/HCT, etc.) numbers. We need to increase your HU dose to achieve the treatment target(s) we set." "I am calling in the change in orders to your pharmacy if you agree."

If these problems persist, perhaps it is time to consider finding a different hematologist, preferably a MPN Specialist.

Thank you MaryAnn for the article, and Steve for the added information. Very useful and important.

WONDERFUL advice, Steve. You have really filled this topic out better than I hoped for in having members elaborate on what problems they face.

Having a hard time communicating with my hematologist.He called on Monday and told me that he did not like what he saw in my blood work and said I was to take 500 mg of Hydroxyurea every night. I have been taking it 3 times a week. That was on TuesdayI have made Two calls to his office requesting the prescription for the extra pills,the pharmacy has sent a fax and still no prescription. He has ordered blood work for October. He does not take any time to explain things.When I see him in October I will have plenty of questions for him thanks to what I have learned on this site.I hope to leave on the 27th August For a five day trip with my Daughters thanks to prednisone I have no pain the meds will run out by the end of my trip so I should get back before it all starts up again.🤣