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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

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@amazeu1969

Hi, my Mom was diagnosed with Polycythemia Vera after her labs went crazy. They did not find the JAK2 mutation until that point. Although looking back a lot of the side effects she has had over the years from the polycythemia Vera and mutated JAK2 that she was mis diagnosed with now made sense. She suffers from severe itching and feeling like ants on her if she takes a shower. Even a sponge bath does it. She was diagnosed with peripheral neuropathy years ago and her labs were not crazy then. But it is the same kind of side effects from the polycythemia Vera. Unfortunately you can’t get rid of polycythemia Vera. She has to take a chemo pills 1500mg daily of hydrea to keep her blood from getting too thick. When her numbers are high the remove blood from her to try to lower it. This blood cancer can turn into acute leukemia at any point. We do monthly blood checks. This is a condition that you can have for some time before it shows symptoms. She started with feeling foggy and just not feeling right. That prompted us getting labs. All of this came to light after she almost died from a bowel rupture and almost died. She spent 32 days in the hospital she has a colostomy now and two huge hernias around that. Just as she was getting better from that was when we found out about the polycythemia Vera and JAK2.

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Replies to "Hi, my Mom was diagnosed with Polycythemia Vera after her labs went crazy. They did not..."

I am so sorry to hear about your mom’s diagnosis. I know the uncertainty about how her disease will progress must be very stressful for you and your mom! I had AML six years ago, so I understand what it’s like living so close to death and not knowing how everything will turn out.

What plan of action is her hematologist proposing? Is she being treated at a major cancer clinic/hospital? My area doctors couldn’t treat my AML and I had to go to a hospital 3,5 hours away. Make sure she is treated by experts in hematology/oncology!