1. < Blood Cancers & Disorders

Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Posted by lkorbel @lkorbel, Apr 20, 2023

42 yo female with platelet count at 478. Jak2 positive. Bone marrow biopsy recently done and confirmed. Started aspirin regimen today. I can't say I have typical symptoms but does anyone experience inflammation in joints as well as bloat and indigestion?

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eileen11108 | @eileen11108 | Apr 30, 2023
In reply to @loribmt "Hi @1995victoria From the Cleveland Clinic site: “Chemocare.com is designed to provide the latest information about..." + (show)
@loribmt

Hi @1995victoria
From the Cleveland Clinic site: “Chemocare.com is designed to provide the latest information about chemotherapy to patients and their families, caregivers and friends. The information on Chemocare.com is provided by the medical professionals at Cleveland Clinic Cancer Center.”

my.clevelandclinic.org/departments/cancer/patient-education/chemocare
Care During Chemotherapy: Chemocare.com | Cleveland Clinic

I’ve used it quite frequently as a trusted and reliable source of information for myself and others. Have you tried the site yet?

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Thank you Lori for answering that question. I was given the Chemocare.com data sheet on Hydroxyurea by my hematologist. Eileen

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hlyonsrn | @hlyonsrn | May 4, 2023
In reply to @ortho3 "Still taking 1000mg after a blood count - platelets still elevated - fatigue seems to have..." + (show)
@ortho3

Still taking 1000mg after a blood count - platelets still elevated - fatigue seems to have decreased. Have BMB scheduled for Tuesday, not particularly excited about it!!

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BMB under sedation? Peace of cake! I don’t remember a thing. The worst was when they started my IV

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nypara66 | @nypara66 | May 8, 2023
In reply to @ortho3 "I’m JAK 2 positive, platelets in 700s. Started hydroxyurea 1000mg/day 2 weeks ago. Am experiencing unusually..." + (show)
@ortho3

I’m JAK 2 positive, platelets in 700s. Started hydroxyurea 1000mg/day 2 weeks ago. Am experiencing unusually elevated fatigue since starting it. Is a this common reaction? I’ve left a message for my oncologist - haven’t heard anything!

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What is your diagnosis? I was diagnosed in January With PV I started out with my platelets at 777 and was given 500mg of HU daily. Usually that is what most people I have seen on here start with. I would call and ask. I haven’t been fatigued from the meds but it takes time to adjust. I am getting brown spots on my skin and my gums were very tender but that has gone away after two months. They say the meds brings out old sun damage and it’s just cosmetic but I’m not happy about the spots. I guess if I keep living that’s minimal lol Good luck!

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remo1110 | @remo1110 | May 9, 2023
In reply to @ortho3 "I’m JAK 2 positive, platelets in 700s. Started hydroxyurea 1000mg/day 2 weeks ago. Am experiencing unusually..." + (show)
@ortho3

I’m JAK 2 positive, platelets in 700s. Started hydroxyurea 1000mg/day 2 weeks ago. Am experiencing unusually elevated fatigue since starting it. Is a this common reaction? I’ve left a message for my oncologist - haven’t heard anything!

Jump to this post

I too take Hydrea 500mg. I know it makes me tired . fortunately i'm retired so I can sleep late. I did tell my doctor he said i was tired due to my age. Im not accepting that answer why wasn't I tired before I took the Hydrea.

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1 reply
beebo | @beebo | May 10, 2023
In reply to @remo1110 "I too take Hydrea 500mg. I know it makes me tired . fortunately i'm retired so..." + (show)
@remo1110

I too take Hydrea 500mg. I know it makes me tired . fortunately i'm retired so I can sleep late. I did tell my doctor he said i was tired due to my age. Im not accepting that answer why wasn't I tired before I took the Hydrea.

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I’ve been on HU going on two years. Right now I’m taking 500 mg 4x/week. I’m not really noticing any bad reactions to it so far. My doctor adjusts the dosage based on hemoglobin count and platelet levels. If either goes too high for a couple of months ( I get a CBC monthly) he either adjusts the dosage or schedules a phlebotomy. I’m only doing those every 4 or 5 months now, was every two weeks when I first started. So I’m thinking that the HU is pretty effective. Only issue I ever had was after I had dropped a HU capsule in my water glass and left it there awhile before taking it. Had major itching for a day following that.

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