Jak2 positive, biopsy next: Does it mean I have blood cancer?

Posted by tkp22 @tkp22, Jun 21, 2022

Hi, I've been told I'm jak2 positive. I'm due to have a bone marrow biopsy in a day or two. My question is, if it comes back normal does it still mean I have some kind of blood cancer?

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@tkp22, I can understand you're worried. It sounds like your health care team is being thorough. Finding out that your are JAK2 positive is just the first step. You require futher testing to know if you have a bone marrow disorder, like polycythemia vera, essential thrombocythemia, or primary myelofibrosis. These disorders are known as myeloproliferative neoplasms (MPNs).

Other testing, like the bone marrow biopsy are needed to determine if you have a MPN and to evaluate its severity.

It's too early to worry about cancer just yet. I'd like to tell you to stay calm and to not worry, but I realize that's easier said than done. Let's focus on the next step before leaping ahead. Do you have any questions about getting a bone marrow biopsy? I'm sure members like @loribmt @stljack @mjpm2406 @rspriggle @stevehurlburt would have tips and experiences to share and what to expect.

What would you like to ask, @tkp22?

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@colleenyoung

@tkp22, I can understand you're worried. It sounds like your health care team is being thorough. Finding out that your are JAK2 positive is just the first step. You require futher testing to know if you have a bone marrow disorder, like polycythemia vera, essential thrombocythemia, or primary myelofibrosis. These disorders are known as myeloproliferative neoplasms (MPNs).

Other testing, like the bone marrow biopsy are needed to determine if you have a MPN and to evaluate its severity.

It's too early to worry about cancer just yet. I'd like to tell you to stay calm and to not worry, but I realize that's easier said than done. Let's focus on the next step before leaping ahead. Do you have any questions about getting a bone marrow biopsy? I'm sure members like @loribmt @stljack @mjpm2406 @rspriggle @stevehurlburt would have tips and experiences to share and what to expect.

What would you like to ask, @tkp22?

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I was diagnosed with MGUS, a plasma cell neoplasm, in 2017. Earlier this year, my blood and platelet counts became extremely elevated. A blood test done for JAK2 came back positive. A bone marrow biopsy was then done to check my MGUS. It confirmed the JAK2 diagnosis along with additional findings on my PCN. As Colleen indicated, the bone marrow biopsy should define any MPNs and also provide information regarding other possible blood disorders. In itself, the procedure is not anything to be apprehensive about. If it does not show the JAK2 gene presence, your original test may have given a false positive. Good luck!

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@colleenyoung

@tkp22, I can understand you're worried. It sounds like your health care team is being thorough. Finding out that your are JAK2 positive is just the first step. You require futher testing to know if you have a bone marrow disorder, like polycythemia vera, essential thrombocythemia, or primary myelofibrosis. These disorders are known as myeloproliferative neoplasms (MPNs).

Other testing, like the bone marrow biopsy are needed to determine if you have a MPN and to evaluate its severity.

It's too early to worry about cancer just yet. I'd like to tell you to stay calm and to not worry, but I realize that's easier said than done. Let's focus on the next step before leaping ahead. Do you have any questions about getting a bone marrow biopsy? I'm sure members like @loribmt @stljack @mjpm2406 @rspriggle @stevehurlburt would have tips and experiences to share and what to expect.

What would you like to ask, @tkp22?

Jump to this post

I would be happy to assist in anyway that I can. I am one year into an MPN- Myelofibrosis. I am also currently in a clinical trial. Feel free to reach out at any time. You can also join myMPNteam to get a lot of resources and real patient information. Blessings, Rene’

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@colleenyoung

@tkp22, I can understand you're worried. It sounds like your health care team is being thorough. Finding out that your are JAK2 positive is just the first step. You require futher testing to know if you have a bone marrow disorder, like polycythemia vera, essential thrombocythemia, or primary myelofibrosis. These disorders are known as myeloproliferative neoplasms (MPNs).

Other testing, like the bone marrow biopsy are needed to determine if you have a MPN and to evaluate its severity.

It's too early to worry about cancer just yet. I'd like to tell you to stay calm and to not worry, but I realize that's easier said than done. Let's focus on the next step before leaping ahead. Do you have any questions about getting a bone marrow biopsy? I'm sure members like @loribmt @stljack @mjpm2406 @rspriggle @stevehurlburt would have tips and experiences to share and what to expect.

What would you like to ask, @tkp22?

Jump to this post

Not knowing is more stress than dealing with truth & reality.
.I have had two bone marrow biopsies….procedure was not the worst I have experienced. Really not a big deal. The first showed minimal scaring and second a year later confirmed no progression. So I was confirmed as ET. I too have Jak2 Have learned a lot in the 5 years since Diagnosed … study, learn, ask questions….doctors who treat rare cancers often do not have answers…that is the state of Mediciene. Manage side effects and monitor religiously….good luck!

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Realized I did not answer your initial question. I am not a dr, but my understanding is Jak2 is a signaling issue. Like a car motor, your system says Make blood, and may not “completely” turn off. So if your motor is running, you will make Excessive Platlets. I am not aware if Jak2 can work in degrees….so most important from Biopsy is if your motor is excessively running….is it damaging your bone marrow (indicated by scarring). Does Jak2=cancer….maybe. Was your platlet count high?

All I can tell you is If so, you take an oral chemo pill daily and try to kill the excess as quickly as it is made. Manageable, not terminal. Living with Cancer does not have to be scary just manage and maintain. Good Luck….hope this now answers your concern….let us know what you find out.

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Instead of a chemo pill I take Jakafi.

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I have a diagnosis of ET strictly on (slightly) elevated platelets and a positive JAK 2 found through a blood count. Is the complete blood count sufficient in this diagnosis, or is a bone aspiration or bone biopsy recommended ?

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@arti4

I have a diagnosis of ET strictly on (slightly) elevated platelets and a positive JAK 2 found through a blood count. Is the complete blood count sufficient in this diagnosis, or is a bone aspiration or bone biopsy recommended ?

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Hi @arti4 I read over another discussion you started regarding Hydroxyurea for ET, and see that you’re getting a second opinion. In your case, I would too. Having platelet levels in the upper 400s that’s been stable for 4 years isn’t that far from the norm. The usual upper ‘norm’ for platelets is 450.

While it may mark the beginning of ET (essential thrombosis) there are other tests your doctor can do to determine if it is ET or another underlying blood disorder causing the increase in your platelets. I can undertand your hesitancy to begin treatment if not necessary. So seeking a second opinion is a really good choice.

A bone marrow biopsy and exam (BMBX) takes a core sample and a blood smear directly from the blood manufacturing system in the body and can give an overall picture of cell production and any anomalies in the marrow. So at some point your hematologist/oncologist may want to do that. A Jak2 gene mutation can be found in a blood draw, which you’ve already had done.
You may have already seen this site, but I’m posting the Mayo Clinic informational article on ET.
https://www.mayoclinic.org/diseases-conditions/essential-thrombocythemia/diagnosis-treatment/drc-20361131

There are a few more articles that you might find of value describing the acquired JAK2 mutation and how it affects the blood manufacturing.
https://blood-cancer.com/clinical/jak2-mutation

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https://www.dovemed.com/common-procedures/procedures-laboratory/jak2-mutation-analysis/
Were you having symptoms that your doctor was checking for or was this in a followup to a routine blood test?

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@arti4

I have a diagnosis of ET strictly on (slightly) elevated platelets and a positive JAK 2 found through a blood count. Is the complete blood count sufficient in this diagnosis, or is a bone aspiration or bone biopsy recommended ?

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@loribmt, thanks for the response. It was found just in routine blood work. But I’ve been having almost daily headaches for several years. Actually nighttime headaches that wake me up. Maybe related?

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@arti4

I have a diagnosis of ET strictly on (slightly) elevated platelets and a positive JAK 2 found through a blood count. Is the complete blood count sufficient in this diagnosis, or is a bone aspiration or bone biopsy recommended ?

Jump to this post

Oo headaches are miserable, especially if they’re daily. I’m not sure if it’s related to the possible diagnosis of ET or not.
But I have found some correlating discussions in the forum for nighttime headaches you might want to take a look at. There are a lot of conversations in the discussions dating from oldest to newest so take your time and read through some of them.
Here’s the like to: Headaches that wake you:
https://connect.mayoclinic.org/discussion/haches-that-wake-from-sleep/
~~~
https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/

And one more on Hypnic headaches. https://www.sleepfoundation.org/physical-health/hypnic-headaches

Any tightness in your neck and shoulders? That’s a cause for my neck/shoulder/upper back issues which used to cause headaches. I see a massage therapist who specializes in Myofacial release which helps tremendously. I also have acupuncture treatments and those two together have kept me headache free for years. Have you ever discussed those with your doctor to determine a cause?

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