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How bad is a diagnosis of Polycythemia Vera?
Blood Cancers & Disorders | Last Active: May 18 12:08pm | Replies (30)Comment receiving replies
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
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Wonderful news that there’s no sign of lung cancer! That had to be a relief. I know this blood condition excitement is relatively new to you and your husband...and frustrating. There can be a bit of a balancing act to get the proper medication and dosage when first diagnosed with a blood condition. Everyone’s body responds differently because there are so many variables from person to person. So it can take a little ‘twisting of the dials’ to get things just right. In your husband’s case, the JAK2 mutation basically interferes with the ability to turn off the switch that controls the production of red blood cells. So he had an overabundance of red cells which can be a problem, requiring him to go on medications to lower and control this. Red blood cells carry oxygen giving the body energy. With the decrease in his red blood cells he may notice a change in energy/endurance.
HU is considered first line medication for treating PV. It has a good track record and from other members sharing their experiences in the forum it’s pretty well tolerated for the most part. But it’s not for everyone and fortunately there are other options. Hopefully this new medication will be better tolerated for him and he’ll find a happy balance with control of the disease and his energy level.
These are lovely photos of you and your husband! Handsome guy! (Can I say that?? 😉