My wife tested positive for jak2 and has high platelet count

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.

That last sentence of yours is what prompts this response. If your wife doesn’t trust and believe what this MD is telling HER then find another doctor.
You obviously have concerns and assuming you have your doubts about the MD and treatment and your wife agrees with you then find her another doctor.

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.

Hi and best wishes and prayers for you and your wife, OP.

I'll share my experience with high platelet counts so far. My platelets had been above normal for a couple of years and fairly slowly but steadily increasing with each 6-months checkup. I'm now seeing a hemotologist/oncologist with ET.

My PCP, in whom I have a lot of confidence, told me high platelet counts can be (and usually are) caused by some secondary but temporary condition, such as an infection, low B vitamins or iron, etc. He had done tests for those and a couple of other things, which were okay. He said we'd continue to keep an eye on it because some tests such as a bone marrow biopsy are invasive. But when my platelet count got to 581k he did a test for JAK-2 gene mutation, which came back positive. At that point he referred me to a hematologist/oncologist in April of this year with a diagnosis of Essential Thrombocythemia. I was 77 at the time; I am 78 now.

The specialist did not do a bone marrow biopsy, probably because the JAK2 gene mutation and my high platelet counts over time mean ET is likely. He was reassuring and positive about this disease, which he said he prefers to call a blood disorder, although technically it is a type of blood cancer, but one that doesn't spread to other parts of the body. He said they don't know what causes it nor what causes a JAK-2 gene mutation. He said I wasn't born with it, didn't do anything to cause it (afatk), and it's not hereditary (which was a relief as I have adult children and grandchildren). They don't know how to prevent it, and at present there is no cure, but it can be treated and managed. He said very rarely it can cause other blood marrow problems or turn into a form of leukemia but usually does not. Platelets are what allow our blood to clot when needed, and the high platelet count makes dangerous blood clots more likely, especially in those over 65.

He said because people over 65 are already at increased risk of blood clots, that if my count got to over 600k, I would need to take a chemo pill (presumably HU although he didn't specify), but that for now to take a low dose coated aspirin each day, which makes the platelets more slippery and less likely to clot. Blood clots that can cause strokes, heart attacks, or go to the lungs are the big danger with ET. He said my blood would need to be checked about every 3 months.

He said not to be scared by the term "chemo pill," because most people tolerate it well and it doesn't make them throw up or lose their hair.

I went for my checkup this week, and thankfully and unexpectedly my count had actually dropped to the 540s, the first time it had dropped since it began rising. Still high, but no chemo pill for now, which was a relief to me. I will continue taking the low dose aspirin everyday. I have to go back in January for a check up.

From what I've read, barring a life threatening blood clot, people with ET who are under a doctor's care usually have normal life spans. Some have symptoms such as tiredness or headaches, but so far I don't. I've also read that younger people who don't have extremely high platelet counts often don't go on any chemo but may take a low dose aspirin, if anything. This certainly isn't medical advice, as I'm not a doctor, and every patient is different. Just sharing what my doctor told me and what I've read about ET.

Discussions such as this one have been helpful for me, and there are several discussions about ET and other blood diseases here. You might want to check those. Several have posted that they've had ET for decades and are doing well.

I hope this info may be helpful and somewhat reassuring to both of you. If you and your wife don't have confidence in her doctor, I would consider getting a second opinion or changing doctors (hematologist/oncologist). Best wishes and God bless you both.

@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.

@cec2 I have high platelet counts as well, but mine are caused by a disease called mastocytosis. Has the possibility that you might have that been discussed?

@dreamspinner3

I think mastocytosis is caused by the a KIT mutation. It's fairly easy to differentiate from ET, which is usually caused by JAK2 or CALR, mutation.

@dreamspinner3
Thank you for your reply. No, no other alternate causes have been discussed by either my PCP nor my oncologist. I am JAK-2 positive.

After reading your post, I did a cursory search on mastocytosis. I have none of the outward symptoms mentioned, and all my other lab work is normal. My high platelet counts and JAK-2 mutation are the only abnormalities they've found.

I also have no outward symptoms of ET, but many people don't, especially in the early years of it. I get tired a little more easily than when I was younger, but then I'm 78 now. It doesn't affect my daily life so I just call that getting older. I can walk several miles, climb stairs, etc.

At my first specialist appointment, he said my PCP had already done the tests he would have done. The specialist did not discuss doing a bone marrow biopsy and I did not ask for one. If my disease worsens or if/when I have to go on a chemo pill and if things don't go well with that, I'll of course start asking more questions. For now, things are going well and I'm trusting these two doctors in their diagnosis of ET.

I will keep your post in mind, of course, for the future. Again, thanks.

@nohrt4me

Thank you for your reply. I do have the JAK2 gene mutation and both my PCP and hematologist/oncologist have only mentioned ET as my diagnosis. Except for the JAK2 mutation and high platelet counts, my other tests have all been normal and I have no outward symptoms.

Unless things start to go poorly, I'm trusting my doctors' diagnosis at this point. Your post is reassuring and I appreciate the info you are sharing.