Jak2 positive, biopsy next: Does it mean I have blood cancer?

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.

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.

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.

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

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!

Instead of a chemo pill I take Jakafi.

Hi,
I was checked for JAK2 by a rheumatologist looking to see if I had rheumatoid arthritis. I have no JAK2 mutation and do not have rheumatoid arthritis but do have one enlarged right finger proximal interphanageal joint huge enlargement with no pain and an enlarged right sternoclavicular joint also with no pain. My high platelets were found on routine blood work 12/11/24 but have decreased by 411 doing nothing differently and no meds. These rare blood cancer diagnoses are very confusing, but at least good as slow progression if we have them.

@1pearl I also have an enlarged sternoclavicular joint that they are going to do a steroid injection on at OSU this month to see if it shrinks. I noticed it last January and it's gotten bigger, I've seen 8 doctors, and no one seems to want to mess with it because of its location. I'm waiting on my JAK2 results right now.

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.