My wife tested positive for jak2 and has high platelet count

Posted by binkybunny @binkybunny, Sep 17 9:59pm

my wife's routine blood test came back with high platelet count a few times in the past few years, every time the doctor would just brush it off and so would my wife. Finally this time I pushed the doctor to dig deeper and they did a jak2 test and it came back positive. My wife has a bone marrow biopsy scheduled for tomorrow.

Can someone give me some questions that I should be asking the doctor during the appointment tomorrow? So far the doctor says she may have ET. He says because the platelet count has been high for so many years it is unlikely it is anything to serious or "she would be dead by now" his words. We are planning on getting a new doctor after the biopsy but please give me some information regarding our situation if possible. I've been searching online and from what I'm reading it seems like if you are jak2 positive you most likely have an MPN which could be 1. PV 2. ET or 3. MPN.

The rest of my wife's blood tests all came back normal, she is 36 years old.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Colleen Young, Connect Director | @colleenyoung | Sep 29 1:28pm

In reply to @bianca2024 "@binkybunny You received some great advice already. I just wanted to jump in and say how..." + (show)

@bianca2024

@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.

Jump to this post

@bianca2024, the information you quoted is useful for finding an MPN specialist.

For anyone interested in reading the full source, here is the link:
- Finding an MPN Specialist https://www.voicesofmpn.com/mpn-blog/what-is-an-mpn-specialist

@binkybunny, how are you and your wife doing?

docoltun | @docoltun | Sep 30 1:13pm

High (1800+) platelet count found when I was 49, in 1999, presumed ET, put on Agrylin (now generic anagrelide); had bone marrow test done in 2010 without getting results (cruddy, young doctor switch), just had another done this Spring with new oncologist. I, too, have Jak-2, and lots of other stuff. I'm also 74, so get an oncologist you trust and follow advice. Most use hydroxyurea to lower platelet count. That wasn't useful for me in 2010 so found another doc who agreed if the anagrelide was working, why switch? New oncologist feels the same way. Best wishes for a long, happy marriage, may your dreams not be disturbed by future fear!

toste | @toste | Sep 30 1:36pm

In reply to @binkybunny "Also wanted to add her platelet is 471 so just a bit above the standard range..." + (show)

@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.

vivoconte | @vivoconte | Oct 1 6:19am

Hola @binkybunny, tengo 42 años y me diagnosticaron trombocitosis escencial cuando tenía 30. Desde ese momento comencé a utilizar hidroxiurea (quimio oral) y durante estos años los síntomas más significativos son fatiga y aumento de caída del cabello (pero tengo pelo aún).
Si tenés alguna duda consultame qué con gusto te puedo responder desde mi experiencia, ya que fui diagnosticada muy joven.
Cariños.

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nypara66 | @nypara66 | Oct 1 6:30am

In reply to @toste "@binkybunny the cancer blood specialist told my husband he wasn’t really worried unless it gets over..." + (show)

@toste My doctor also said up to 600 was acceptable. Everyone has a different norm depending on age and other health conditions. I’m 59, JAK2 positive and have PV In it for almost three years now.

toste | @toste | Oct 1 8:40am

In reply to @nypara66 "@toste My doctor also said up to 600 was acceptable. Everyone has a different norm depending..." + (show)

@nypara66 thank you, do you have any symptoms? My husband doesn’t have any. He was diagnosed 2 months ago by blood work.

nypara66 | @nypara66 | Oct 1 1:19pm

In reply to @toste "@nypara66 thank you, do you have any symptoms? My husband doesn’t have any. He was diagnosed..." + (show)

@toste Headaches and tingling in hands and feet. Also, burning in my shin bones. It’s sporadic so you kind of ignore it. Once my hematocrit goes over 45 I feel the headaches often and know it’s time for the phlebotomy. I get tooth pain an extreme sensitivity to the sun on the hydroxyurea. Some hair loss but it stopped after my body adjusted. Good luck!

jbcl | @jbcl | Oct 2 9:31am

I just went for my follow up one month visit, since I started daily 500 mg of hydroxyurea.
My platelet count dropped from 548 to 377. I am relieved.
Everyone needs to do what works for them, so God guide you in your decisions.

jtcat7 | @jtcat7 | Oct 2 3:40pm

In reply to @jbcl "I just went for my follow up one month visit, since I started daily 500 mg..." + (show)

My count was 1.4 million. Went on 2,00mg Hydroxy a day for a 6 weeks and reduced it to 480,000. Now taking 1,000mg 5 days a week and 500mg 2 days a week to maintain.

jbcl | @jbcl | Oct 2 4:13pm

In reply to @jtcat7 "My count was 1.4 million. Went on 2,00mg Hydroxy a day for a 6 weeks and..." + (show)

This site is so encouraging! Thank you for sharing and may God continue to bless your progress!

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