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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sand103 | @sand103 | Apr 30, 2023
In reply to @sand103 "Do you also take Hydroxyuria?" + (show)
@sand103

Do you also take Hydroxyuria?

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Was wondering if I could take supplements while onHydroxyuria also? Currently on 1500 mg

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2 replies
martha2023 | @martha2023 | Apr 30, 2023

I am 64 and just diagnosed with PV. I'm on the same medication you are. Trying to lower my red and white blood cells...also giving blood due to my thick blood and risk to blood clots and heart attack. It is very scary and I just don't know what is going to happen. I feel good but who knows.

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carolann21 | @carolann21 | Apr 30, 2023
In reply to @sand103 "Do you also take Hydroxyuria?" + (show)
@sand103

Do you also take Hydroxyuria?

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No I don’t

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bevjg | @bevjg | Apr 30, 2023

No. Nothing like that. I feel no side effects from Hydrea. Never took aspirin as my platelets were much higher than that.

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jjdownes01 | @jjdownes01 | Apr 30, 2023
In reply to @klcc "My first HU prescription arrived in the mail today. It has NO directions on how to..." + (show)
@klcc

My first HU prescription arrived in the mail today. It has NO directions on how to take it: with or without food, what time of day is best? I would appreciate any suggestions. Thank you.

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I have taken hydroxyurea (started at 500, went to 1000) for a year. I am 78. Could take with food or water. Itching went away and fatigue got a little better. Blood work has been good, but since I could get jakafi for $10 copay, I have started on it. We’ll see.
jjd

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bevjg | @bevjg | Apr 30, 2023
In reply to @sand103 "Was wondering if I could take supplements while onHydroxyuria also? Currently on 1500 mg" + (show)
@sand103

Was wondering if I could take supplements while onHydroxyuria also? Currently on 1500 mg

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WOW! 1500 mg is a super high dose. I would not dare to take supplements without discussing with doc first.

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Mentor
Lori, Volunteer Mentor | @loribmt | Apr 30, 2023
In reply to @sand103 "Was wondering if I could take supplements while onHydroxyuria also? Currently on 1500 mg" + (show)
@sand103

Was wondering if I could take supplements while onHydroxyuria also? Currently on 1500 mg

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Hi @sand103 It’s not a good idea to take any supplements unless you discuss this with your hematologist oncologist first. Some supplements can interfere with the body’s ability to process medications, causing either too much or too little to be absorbed in the system. Even something as innocent as fruit juices can interfere. I wasn’t on Hydroxyurea, but another medication after my transplant. I wasn’t able to have pomegranate juice, grapefruit, or oranges because of the side effect they would have on my meds.
What supplements were you considering?

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pherbag | @pherbag | Apr 30, 2023

I’m 51. I have CALR mutation ET. Blood platelets have always been 950-1200 for 11 years. Who knows how long I had it before I found out. I haven’t had any symptoms and have lots of energy still. I’m very active so that may have something to do with no symptoms and still having energy. I have been on Hydroxyurea for about 1 year. My count has lowered to around 450. Only side affects seem to be my hair isn’t as thick, at least my wife says so, but I can’t tell. Also, right after taking it I developed a cough that happens only after eating or drinking.

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1995victoria | @1995victoria | Apr 30, 2023
In reply to @eileen11108 "My Hydroxyurea came with paperwork to take it with a full glass of water with or..." + (show)
@eileen11108

My Hydroxyurea came with paperwork to take it with a full glass of water with or without food, My hematologist suggested half hour before or after eating.
I take it in the morning but it is your choice. If you go on Chemocare.com you can print or view a lot of information on Hydroxyurea.

The information sheet said to aim for minimum 64 ounces of fluid daily to flush the toxic effect.

Eileen

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curious what corporation is publisher of chemocare.com.....since it's a dot com website. not a nonprofit which would be a dot org?

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 30, 2023
In reply to @1995victoria "curious what corporation is publisher of chemocare.com.....since it's a dot com website. not a nonprofit which..." + (show)
@1995victoria

curious what corporation is publisher of chemocare.com.....since it's a dot com website. not a nonprofit which would be a dot org?

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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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