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How bad is a diagnosis of Polycythemia Vera?

Blood Cancers & Disorders | Last Active: May 18 12:08pm | Replies (30)

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@loribmt

Hi @onthejoedock Polycythemia vera is a type of cancer that causes red blood cells to multiply. Having too many can cause some serious complications if untreated, such as blood clots. Hydroxyurea is one of the medications used to get the overproduction of blood cells back in order. As others have mentioned, it can take a while to get the balance of HU just right for your husband.
His doctor may make adjustments such as reducing the dosage to one 500 ml per day or alternate how much he takes per week. The initial high dosage may be in response to the blood result number of your husband. It may be reduced as his numbers come down.
But if he is having such a negative reaction to the large dosage call his doctor’s office. They may have him take one pill per day and then work up to two.
As we get older our bodies don’t process drugs as quickly so it is possible to get too much in the system at one time. Again, it’s important to speak with your husband’s doctor right away. Don’t hesitate to call them…you’re not being a bother! They won’t know unless you tell them about your husband’s reaction.
Here are links a couple of good articles on PV so that you can learn a little more about it.
https://www.healthline.com/health/polycythemia-vera
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https://www.verywellhealth.com/polycythemia-vera-disorder-overview-2252550
Was your husband tested for a mutation such as JAK2?

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Replies to "Hi @onthejoedock Polycythemia vera is a type of cancer that causes red blood cells to multiply...."

Yes my husband had the JAK2 test after his platelets were in the 800's. And JAK2 TEST came back positive medium deterioration. Dr said he had jak2 ET. Dr started Hydrea 500 mg once a day. And set up a bone marrow biopsy. After months we got biopsy. Dr said Joe my husband, is polycythemia Vera because RBC are too high. RBC is getting too thick. So did a phlebotomy that day. Took 1 pint blood out and saline back in. And to do ever 2 weeks and take Hydrea twice a day. Then check bloodwork a day before next Phlebotomy. So my Joe instead of taking Hydrea twice a day to them all at once in the morning and relized that wasn't good it messed him up. So now takes one in morning and one in evening. But the evening makes him very tired and goofy. But it's getting a little better maybe. So waiting for next bloodwork to see how he is doing. Last bloodwork was platelets down to 673 and RBC were 52.7%. Thank you for your comments

Yes it was positive medium Deterioration. Joe my husband was on Hydrea but his legs started to get weak and painful to point he had no balance and had to crawl around by hanging on to furniture or railings. So they stop hydrea over month ago. Now he is walking again but still laying in bed most of the time except for walking the dog or maybe little yard work. Then back to bed. His platelet numbers went down from 700-800 to 450. He had two phlebotomies and they were stopped red cells are low. But now they want to try new medicine a Jak2 inhibitor med. In a week or so. Just not sure about anything. His calcium levels were high so they did some kind of IV treatment and is come down some. That did chest ct scan no lung cancer found. Now checking the parathyroid or pituitary gland see if there's something going on there waiting for ultrasound. I just wished and he wishes he had some more energy back somehow. So we are just waiting for new meds and any new findings. Thanks