What? 471 is actually acceptable. Everyone has encouraged you to take her to get the BMB and honestly your first question should have been How will the results change her treatment plan?? I had high platelets, over 800 and elevated red cells and hematocrit. I was just 56. Did JAK2 and it was positive. Previous labs for annual check ups were always normal. I was diagnosed with PV. My doctor asked if I wanted a BMB and we discussed it. He said my treatment plan would be the same, Hydroxyurea and baby aspirin and phlebotomies when hematocrit was over 45.. I decided against it and he was fine with it. Here I am almost three years later keeping it under control with the above treatment. Some people may need this test to mentally accept their diagnosis but it can be done from lab tests alone. Always take your wife’s feelings into consideration and remember that the medical field is a business as well. Even with ins that test is expensive and painful. I wish you both the best care and luck with her treatment.

I can confirm that this "oncologist" sounds incompetent.

Of course the height of the count makes a difference.

At a minimum, a daily low-dose aspirin should be considered. Regular exercise too is important.

It is good you are getting the biopsy. It is good to know which mutations you are dealing with even if it does not change her treatment in the near term. The biopsy really is necessary to get most accurate diagnosis. I only got my biopsy and diagnosis this year after years of platelets at or above high end of “normal” range. Last year my platelets started to increase more dramatically-so things can change fast too. Good to be diagnosed and monitoring.

I hesitate to jump in here because you're getting kind of a lot of info that's probably making your head spin.

But: Your hemo is correct that "high is high" for someone who has JAK2 mutation. (We CALR mutants are slightly different.) That means that clot risk for a JAK2 patient goes up once platelets are consistently trending above normal. (If platelets get over 1 million, then patients can get acquired von Willebrand's disease, reversible with treatment, but, weirdly, can cause internal bleeding along with clot risk. But von Willebrand's is rare in patients under a doc's care, so put that worry way at the very bottom of the pile for now.)

Due to your wife's age and, I presume, lack of previous clots, she's still low risk for a clot, so she may only need baby aspirin for a time, like maybe years. She'll also need blood counts a few times per year to track platelet counts.

ET is "indolent," which means it unfolds in s-l-o-w motion. Like over years and decades. It's the proverbial marathon. Pace yourself. As a caregiver, build your reserves. Find a hobby. Take a drive. Get one of those pumpkin spice things. Take the info as it comes and take time to digest it.

Above all, ask your wife what she wants and needs.

@binkybunny

You received some great advice already. I just wanted to jump in and say how great it is that you are supporting your wife. My spouse has been extremely supportive, and it's really helped me through the diagnosis stage and the phlebotomies. So know that you play a vital role in helping her navigate all of this.

I was diagnosed with PV November 2024 and just requested a new hema/onc today. I just can't deal with my nonchalant and condescending hematologist anymore. No, this is not a life-threatening cancer right now ( I'm < 60 yo w no history of blood clots), but it is life-altering.
Try to find an MPN specialist in your area. Here are some useful questions, from the Voices of MPN website, to ask your physician:
Voices Blog
Finding an MPN Specialist
Voices of Mpn logo
Author: Voices of MPN

WHAT QUESTIONS CAN HELP ME CHOOSE AN MPN SPECIALIST?
It’s important to take an active role in your own care by doing your research and asking questions that can help you make informed decisions about your care, including who is going to help you manage it.

The following questions can be used to guide your discussions while consulting with various Healthcare Professionals:

How much experience/training do you have caring for patients with MPNs
How many MPN patients are you currently managing?
Are you board-certified and licensed?
Note: A “board-certified” hematologist-oncologist is licensed to practice medicine, has additional education and training in hematology-oncology, and has passed specialty medical board examinations
Do you belong to any MPN professional societies?
Have you participated in any MPN clinical trials?
What MPN and/or hematology/oncology conferences have you attended?
Are you willing to collaborate/consult with my other Healthcare Professionals as part of my ongoing care?
Are there additional support resources available to help me with questions and quality-of-life concerns (eg, nurses, case managers, social workers)?
What is the average wait time for scheduling appointments?
What hospitals or cancer centers are you affiliated with?
Do you have other office locations?
Do you offer telehealth (or virtual) appointments?
How knowledgeable is your staff about MPNs?
What is the best way to contact you?
How quickly will my phone calls be returned?
What should I do if I need to contact you at night, on weekends, or on holidays?
What kind of questions should I direct to you instead of my primary Healthcare Professionals

I hope your wife is recovering well from her biopsy.

@binkybunny the cancer blood specialist told my husband he wasn’t really worried unless it gets over 600. He is just taking baby aspirin at this point.