1. < Blood Cancers & Disorders

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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eileen11108 | @eileen11108 | Feb 15 7:50am
In reply to @sbaker343 "About 6 months ago a blood test showed very high platelet counts. Next, I tested positive..." + (show)
@sbaker343

About 6 months ago a blood test showed very high platelet counts. Next, I tested positive for JAK2 V617F mutation. For a couple of months, I have been taking Hydroxyurea (500 mg) My parameters are basically within limits, but my Dr wants to get the Hematocrit under 45% - last tested at 46.3%. He boosted my Hydroxyurea to 24 x 500mg/week. I get more blood tests next week and will have a tele meeting with my Dr Feb 20. Hoping to reduce medication, while having no negative reactions. I will review the biopsy results in more detail at that meeting.

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24 Hydroxyurea capsules seems an extreme dose, Hope he is able to lower the dose quickly, Best wishes go out to you.

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stickball1 | @stickball1 | Feb 15 10:01am
In reply to @sbaker343 "About 6 months ago a blood test showed very high platelet counts. Next, I tested positive..." + (show)
@sbaker343

About 6 months ago a blood test showed very high platelet counts. Next, I tested positive for JAK2 V617F mutation. For a couple of months, I have been taking Hydroxyurea (500 mg) My parameters are basically within limits, but my Dr wants to get the Hematocrit under 45% - last tested at 46.3%. He boosted my Hydroxyurea to 24 x 500mg/week. I get more blood tests next week and will have a tele meeting with my Dr Feb 20. Hoping to reduce medication, while having no negative reactions. I will review the biopsy results in more detail at that meeting.

Jump to this post

Not sure of your stated dosage intake. How many 500 mg (HU) are you taking per day?
I started with one per day and after several weeks my platelet count decreased to 350 from 970. My Hemo/Onc reduced HU to 4 per week and I’m holding my platelet count at 350 for the last 8 months. All other blood values are in spec. No side effects except for an increase of skin lesions (squamous cell carcinoma). I had two removed from my hands last week. Small price to pay in order keep JAK-2 at bay.

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1 reply
etandme0983 | @etandme0983 | Feb 16 8:57am
In reply to @stickball1 "Not sure of your stated dosage intake. How many 500 mg (HU) are you taking per..." + (show)
@stickball1

Not sure of your stated dosage intake. How many 500 mg (HU) are you taking per day?
I started with one per day and after several weeks my platelet count decreased to 350 from 970. My Hemo/Onc reduced HU to 4 per week and I’m holding my platelet count at 350 for the last 8 months. All other blood values are in spec. No side effects except for an increase of skin lesions (squamous cell carcinoma). I had two removed from my hands last week. Small price to pay in order keep JAK-2 at bay.

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I started on HU, 500mg/day a month ago . Platelets decreased from 650 to 450; Onc/Hem. She almost increased my HU , but will re-check blood in 6 weeks . I’m praying my platelets decrease . I’m 69, only have a few mouth sores, night sweats and leg sores, otherwise I feel great .
Anyone have any ideas about extra things I can do to get the platelets down besides increasing HU? I exercise , eat healthy , weigh 110, only have Osteoporosis, still work 3 days/wk. I dread increasing HU . Help!

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1 reply
etandme0983 | @etandme0983 | Feb 16 9:05am
In reply to @1995victoria "I understand how the word "cancer" can strike fear in your heart. When I first heard,..." + (show)
@1995victoria

I understand how the word "cancer" can strike fear in your heart. When I first heard, I was "frozen" for about a month, when a good friend "kicked me in the butt" and told me to go to MemorialSloanKettering, a mega cancer center. I realized I'd rather take meds for the ET Jak2 than to possibly have a stroke or heart attack. Yes, it's a chronic blood cancer, but could be MUCH MUCH worse. All the best, take care, stay safe

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Me too ; didn’t want to say “cancer” or take HU for the rest of my life , but the risks without it are much worse . Stroke run in my family ; ET is not genetic , but studies are still being done to determine if it is a precursor in families. ( My Aunt and Uncle were on HU and both had strokes )???. Best of luck !

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stickball1 | @stickball1 | Feb 16 9:41am
In reply to @etandme0983 "I started on HU, 500mg/day a month ago . Platelets decreased from 650 to 450; Onc/Hem...." + (show)
@etandme0983

I started on HU, 500mg/day a month ago . Platelets decreased from 650 to 450; Onc/Hem. She almost increased my HU , but will re-check blood in 6 weeks . I’m praying my platelets decrease . I’m 69, only have a few mouth sores, night sweats and leg sores, otherwise I feel great .
Anyone have any ideas about extra things I can do to get the platelets down besides increasing HU? I exercise , eat healthy , weigh 110, only have Osteoporosis, still work 3 days/wk. I dread increasing HU . Help!

Jump to this post

Standard dosing for HU is usually one per day. It takes a few weeks for your body to adjust. Don’t expect overnight miracles. Diet and exercise always have a positive effect, so stay with the program. I’m 88 and I’m living my life. Essential thrombocytopenia is just a minor inconvenience as far as I’m concerned. Good luck in the future.

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