1. < Blood Cancers & Disorders

Need help newly diagnosed with a high platelet count and the JAK2 gene

Posted by lindagualtieri @lindagualtieri, Sep 23 7:36am

Hi, I am new here and need some help. My platelet counts have been running high around 680. I just had a bone marrow biopsy, and I am positive for the JAK2 mutation (V617F) with variant allele fraction 15.7% (have no idea what this means), but negative for BCR/ABL1 P210 and P210? My Aunt was diagnosed with Polycythemia Vera (and also had the JAK2 gene), when she was 42. She died 20 years later as they could no longer remove red blood cells, and a bone marrow transplant was not an option...I go see the oncologist/hematologist tomorrow, and I am not sure what questions to ask. Should I be worried? I have absolutely no symptoms. I am a healthy 64-year-old and have not had any issues up to this point, except for a back fusion, which was done 15 years ago. The oncologist did say before the biopsy that my aunt's diagnosis is very relevant, and I am scared. The high platelet count came back on a routine blood test, I had no idea....any help with what questions I should ask tomorrow, would be greatly appreciated

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nohrt4me | @nohrt4me | Sep 28 7:34am
In reply to @bluegrasspv2018 "Good morning lindagualtieri. I am from Kentucky. I have had Polycythemia Vera (PV) for 6 years..." + (show)
@bluegrasspv2018

Good morning lindagualtieri. I am from Kentucky. I have had Polycythemia Vera (PV) for 6 years (age 65 now). A routine blood test showed my platelets at about 600. Yes, I too have the genetic mutation of the JAK2 (V617F). I am still waiting for genetic mutation superpowers like spiderman but nothing yet. I am taking 500 Hydro (HU) once a day. My platelets are in the 300 range which is normal depending on what blood expert you talk to. Other than fatigue and brain fog late in the afternoon, I have very few symptoms. I believe physical exercise is important. I go to my gymnasium 2 to 3 times a week and feel much better because of it. I am active in my veteran organizations. Most people I know have no idea I have the diet coke of cancers called PV. I have an occasional drink when watching my Liberty University play football and have had no complications because of it. I refuse to give up on the activities I enjoy because for some unknow reason my body decided to mutate. Hang in there and stay frosty. You are not alone. J.

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Superpowers! I have read that ET blood will kill mosquitos if they bite me. This is not confirmed by any scientific journal. But I like believing it, so not looking too hard to verify it. I might get a cape. And a sexy mask. Like Catwoman. 🙂

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vivoconte | @vivoconte | Sep 28 9:49am
In reply to @lindagualtieri "I started on 500 mg of HU yesterday. I am assuming you should not drink alcohol..." + (show)
@lindagualtieri

I started on 500 mg of HU yesterday. I am assuming you should not drink alcohol with this drug or eat spicy foods. I do like to drink a glass of wine from time to time, but now I would be afraid. Any comments on special foods or drink to stay away from?

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Hola, yo bebo una copa o dos de alcohol los fines de semana.
No he tenido ningún problema.

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Rhonda Gregory | @rjgregory440 | Sep 28 10:31am
In reply to @lindagualtieri "I started on 500 mg of HU yesterday. I am assuming you should not drink alcohol..." + (show)
@lindagualtieri

I started on 500 mg of HU yesterday. I am assuming you should not drink alcohol with this drug or eat spicy foods. I do like to drink a glass of wine from time to time, but now I would be afraid. Any comments on special foods or drink to stay away from?

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I've never heard of any limitation on alchohol (except moderation) or spicy foods, but it would make sense to me to take the Hydroxyurea in the morning with plenty of water instead of in the evening, to avoid any stomach upset.

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ronegeorge | @ronegeorge | Sep 28 12:24pm
In reply to @et1055 "Thanks for the tip about the paper pill cup. Where do you get them?" + (show)
@et1055

Thanks for the tip about the paper pill cup. Where do you get them?

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I just use the plastic lid for dispensing my HU. The lid is what is used by the pharmacy to dispense other drugs I take. My HU already is dispensed in plastic...

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1 reply
ronegeorge | @ronegeorge | Sep 28 12:31pm

I didn't like varying my HU dosage from 500mgs to 1000mgs from day to day; I felt that I had more problems after taking the 1000mg dose. So I researched and found that HU is also made as Droxia (and marketed to sickle cell anemia pts). Droxia comes in 200, 300, &400mg doses, and my hematologist agreed to give me 600mgs/day of the Droxia. I've been on it for 6 yrs without difficulty. I'm 77, PMF, JAK2+, and have not had spenomegaly or anemia. Other blood counts are normal, except for LDH being double the normal range.

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1 reply
et1055 | @et1055 | Sep 28 11:39pm
In reply to @ronegeorge "I just use the plastic lid for dispensing my HU. The lid is what is used..." + (show)
@ronegeorge

I just use the plastic lid for dispensing my HU. The lid is what is used by the pharmacy to dispense other drugs I take. My HU already is dispensed in plastic...

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I am from Canada, so the Cancer Clinic dispenses the drugs. They gave me a six month supply on my first visit, so the container is quite large. I’m just trying to figure out a way of taking them without having to touch them.🫤

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1 reply
nohrt4me | @nohrt4me | Sep 29 8:06am
In reply to @ronegeorge "I didn't like varying my HU dosage from 500mgs to 1000mgs from day to day; I..." + (show)
@ronegeorge

I didn't like varying my HU dosage from 500mgs to 1000mgs from day to day; I felt that I had more problems after taking the 1000mg dose. So I researched and found that HU is also made as Droxia (and marketed to sickle cell anemia pts). Droxia comes in 200, 300, &400mg doses, and my hematologist agreed to give me 600mgs/day of the Droxia. I've been on it for 6 yrs without difficulty. I'm 77, PMF, JAK2+, and have not had spenomegaly or anemia. Other blood counts are normal, except for LDH being double the normal range.

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I'm going to ask about that next appt!

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Mentor
Lori, Volunteer Mentor | @loribmt | Sep 29 9:06am
In reply to @et1055 "I am from Canada, so the Cancer Clinic dispenses the drugs. They gave me a six..." + (show)
@et1055

I am from Canada, so the Cancer Clinic dispenses the drugs. They gave me a six month supply on my first visit, so the container is quite large. I’m just trying to figure out a way of taking them without having to touch them.🫤

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Hi @et1055, there are easy ways to take the Hydroxyurea capsule without touching it. By the way, if you do touch the capsule, just make sure to wash your hands thoroughly afterwards. It’s not going harm you from a brief exposure. It’s to prevent any trace of chemotherapy medication from being where it shouldn’t…

That being said, you don’t have to live in fear of dispensing the pill. Simply slip one out of the bottle into a paper cup, or one of those little plastic dosage cups that come with cough medicine, or a juice glass or what have you. Then just ‘pour’ the pill into your mouth and take the water to wash it down. Make sure to drink a good 8 ounces of water afterwards and plenty throughout the day. It helps to keep hydrated and to flush toxins from the body.

I hope these suggestions are helpful for you. Let me know, ok?

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