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Diagnosed polycythemia vera at 26: Any young PV patients out there?
Blood Cancers & Disorders | Last Active: Jan 1 10:39am | Replies (44)Comment receiving replies
I woud like to reply to the 26 year old who believes she/he has pylocythemia Jak2 positive mutation..I'm 77 been treated for 2 years for PV jak2.. I'm a retired trauma nurse and understand you emotionally..I felt all the emotions you mention even at 77 so I can imagine the fear you're feeling. In terms of feelings I was also very negative for at least a year..Once I got ahold of my emotions and negativity things started to get better. Do you know you can have pylocythemia Vera without the JAK2 mutation? if you haven't tested positive for the mutation your far better off with PV if you only test for PV..I should add it's not typical though... your very young, its my feeling that more people would be diagnosed but 95 percent of family doctors have never encounter this rare disease.Patients have heart attacks and stokes and that becomes the cause of death instead of PV jak2 as the cause.. believe me there's many more of us out there undiagnosed.. I ended up dagnosising myself , my numbers kept creeping up and I was told several times it's dehydration...The numbers kept climbing I didn't know what I had but knew it was something. If your not testing positive for the JAK2 I would have a repeat to be sure..If they want to do a bone marrow biopsy then do it, it truly wasn't that bad. Have you heard of Crisper?..Academic centers are very involved in this research for PV JAK2 right now and getting ready to start on humans. If this passes the professionals are saying they could cure this disease within 2 to 5 years..Try to go with the flow, stay as positive as you can, try to get a hematologist at an academic institution like Mayo and know that relieF is most certainly on the way..Please don't suffer alone, talk to trusted family, friends and your care team., do your own research it would be great if you can get on AI you'll learn things about this disease you never thought possible, expert level knowledge, Never add or change anything without your hematologist ok. instead of feeling like a victim you start feeling in control with the help of you care team.. Lastly, 2026 is going to be the best year ever.....Happy New Year...
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@jackiecarey Hi, that's me. Thank you for your comment. Im currently being seen by hematology/oncology at Florida Cancer Specialists, which is the best in my area and thankfully take my insurance. I was Jak2 negative, so right now were looking at possible causes for secondary or other rarer genetic mutations that can cause primary ( which will be found in the biopsy). I should be scheduled for a biopsy after my next checkup, we needed another abnormal lab to justify the cost to insurance. Depending on the biopsy findings ill either know I have primary with no Jak2 or ill have to start seeing other specialists to determine if the cause of my secondary is from my lung, liver, kidneys etc. ( we've already ruled out the less serious causes like sleep apnea , I've never smoked , etc etc). Im taking everything one day at a time. Some days I feel great , other days not so much * mentally and physically. I haven't started phlebotomy yet ( another insurance thing, they need an official diagnosis) but I've been told once I start that and possibly some other medications I will actually feel better and healthier then I have in awhile. ( I've been struggling with headaches , itchy skin, bone pain, bleeding gums , etc.). I am grateful to have a doctor who knew to refer me with consistent labs over the normal and that I am someone who does see a doctor routinely at my young age. I have hope things will turn out better then I expect. Happy new year to you!