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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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Profile picture for eileen11108
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)
Profile picture for sbaker343 @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)
Profile picture for sbaker343 @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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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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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)
Profile picture for stickball1 @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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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)
Profile picture for 1995victoria @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)
Profile picture for etandme0983 @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!

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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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guitarjane74 | @guitarjane74 | Jul 17 12:07pm
In reply to @pamdg "Instead of a chemo pill I take Jakafi." + (show)
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Instead of a chemo pill I take Jakafi.

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Hi I just joined this group and I was JAK 2 positive also .. my doctor gave me a chemo pill called Hydrea and I've never taken medicine I'm 69 years old and relatively healthy except for this... I want to switch over to the jakafi and my doctor said I can but it's a little hesitant how do you feel on that if you don't mind me asking and is it helping your blood elevation? My medication is helping I just don't feel that well on it..
Thank you,
Kim

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