← Return to Blood Cancer - JAK2 - Autoimmune- Confusion

Comment receiving replies

Ive just been diagnosed with the JK2 gene mutation a few months ago. I'm 75 . I'm a retired nursing Director of Trauma, very aware. always have kept up with the medical information. I noticed a few years ago that my red cell, hematocrit, hemoglobin and platelets kept creeping up. My family Doctor regular response was dehydration. After a TIA and emergency visit, I had the gold standard check up, they found nothing. But I noticed on CBC that the hemoglobin/hematocrit and platlets were now pass the normal range. I decided enough and to make an appointment with a hematologist. He came in the room, sat down and said you don't have leukemia..I was stunned for two reasons, the blood work doesn't support leukemia and I was expecting nothing major was at work.. It was a surreal moment and I hardly heard what he said next. (my husband was with me) He said you have polycythemia Vera.. I had never heard of PV and after reading found it to be very rare..The blood testing came back positive for JK2..This doctor is very kind and I like him personally however, when I ask questions he uses words like transformative etc that throw me off. When I called him on it he said "I prefer using words like this rather than scare the pt. I asked him not to do it with me however he still does. So, I'm also a pt at MDAnderson downtown Houston for followup as I have a history of breast and bowel cancer.(all good) Ive requested a second opinion and will stay there where my treatment in the past has been phenomenal. I live in Houston, Texas and MDAnderson is close. You sound like you're in a quagmire with no way out; a couple of questions to think about, 1. where are you getting medical care? you're positive for Jk2 so you have it and sounds like not getting treatment, it needs to be managed or a good reason for not. It's very rare and most Dr.s have never had a pt with the PV diagnosis..I have a lawyer friend who was diagnosed with JK2 is her 30's and has it managed now into her 70's..I'm suggesting you go to a large well known institution like Mayo, MDAnderson etc. where they have specialist who deal with PV specifically...This seems to be effecting your everyday life and while you struggle....you seem to feel you're not being managed..2) There may be more than one diagnosis. I'm not a doctor and can't diagnose however my experience is PV is considered a blood cancer and needs to be managed and can be for many years...Consider going to a large, academic institution and settle this once and for all. you found your way to this site, excellent ..I'm not saying your current doctors are right or wrong , I'm saying you are concerned and this needs to be put to rest.

Jump to this post

Replies to "Ive just been diagnosed with the JK2 gene mutation a few months ago. I'm 75 ...."

Thank you for your response, Jackie! I am in NH, but my insurance currently won't cover the bigger Boston hospital systems...I'll keep pushing.