It is so sad that some Hemotolists / Oncologists have no respect for their patients . I kept seeing my platelets rise after having regular blood panels and finally I suggested I should be seen by a specialist . The worst Oncologist/Hematologist ever licensed . I had done my homework and after DNA Threading and numerous appts spread out over months , I had to also ask this if this was cancer , how rare it was and what Hydroxurea was . I knew I had to be my own advocate and after my Bone marrow Biopsy( my Oncologist never even called to check on me ) , it was obvious I needed a Dr that was a lot more empathetic and knowledgeable , so I researched my ET and am now seeing a wonderful Oncologist. I know I have to be on Hydyoxurea for the rest of my life ; my platelets are 620 and my new Dr is trying to get them down to 400. Strokes run in my family and This cancer is very very rare ( .01 % of the population has it ) . It is not genetic , but they are still doing research to see if it somehow has been linked to family members .
You have to be YOUR OWN ADVOCATE! . Do not be afraid to question Doctors , and change Dr’s if you don’t feel good about your medical care ! Your life depends on it ! Good luck

I'm on year 17 with ET.

When Dad was diagnosed, his doc told him nothing. When I got the official diagnosis 10 years ago, I got a bit more info.

Since then, researchers have learned more. Might be good to ask your doc you didn't realize you have a pretty rare chronic cancer, and what's new on the treatment front?

In my experience with specialists, they don't much volunteer info.

I am sorry you had such incompetent "care" for so long. You are on a much better path now.

Odds are that once the HU brings down your platelet count, you'll get your energy back.

Rooting for you!

Hi lynne gragham,
Yes, I think docs just want us to take what they prescribe for what they think we have. I just cannot do that. I really need to know what I really have! Being an optometrist and able to think for myself, I question their decisions, especially if they have never seen me in person or are are going on one lab test. I still have not met by primary doctor and changed to a new one after four cancellations from the one I first selected! I have seen an oncologist/hematologist as I was directed there. I actually requested to have a bone marrow biopsy to see what I really have and did it four days ago. It takes a while for results, so I do not know the results, only that I have just CALR mutation per blood work. It is confusing to me to have a blood test one month later that shows my platelets dropped by 411 on their own by my doing nothing differently. I have not filled nor taken Hydrea prescribed for me twice per day, 500 mg from my initial blood test. I have not taken one baby aspirin once per day as O/H actually advised me against taking baby aspirin after primary doctor who never ever saw me had her medical assistant call to tell me to take it. I really question the medical system as a whole now, especially after COVID and so much reliance on AI and target numbers based upon templates. PPO prior that I had prior and now senior advantage plan I have now both seem somewhat incompetent.
Thank for listening to my concerns.