That's awesome! I pray you'll get the same news next year. In the meantime, enjoy life!
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@misty45, Thank you for replying and telling me your story. Having a positive JAK2 result, I'm still in that waiting stage also to see which way it is going to affect me. Whether it will be polycythemia vera (PV), essential thrombocythemia (ET), or leukemia. Since none have yet reared their ugly head, I am tested every 3 months and am not on any medication for this. I do have a few questions for you if you don't mind answering them: 1) Along with your current medication, do you have to give blood to get rid of the extra platelets or does the medication reduce the amount of platelets your bone marrow is producing without having to give blood? 2) Since you obviously have tried cutting back on the prescribed medication, was that because of side effects? If so, what side effects did it cause for you? 3) Can you tell when your platelets are high (do you have symptoms?) or not? 4) From what you've experienced, found out or been told, does having ET mean that leukemia is the next guaranteed step in this disease or is it possible that will never happen? I'm so glad (dare I say relieved) to hear that you have survived all these years with this disease without it progressing into anything worse and hope that that will continue for many years to come. There was an article I saw from the National Institute of Health (NIH) that tested well over 10,000 people and tracked them for many years. From those 10,000+ people, they found only 15 that had the JAK2 mutation and determined that only 3 of the 15 died as a direct result of their disease well into their 70's or 80's. The remaining 12 died from other causes. I'm in my mid-60's with no other major health issues so that really helped me wrap my head around some of this and encouraged me.
Although not a patient at Mayo, I agree with you wholeheartedly. In my area, doctors use a patient portal to access your medical records if you so choose. I do. Do I always understand everything? No. Have I found errors in it? You bet. Has it provided me a platform to discuss things with my doctor(s)? Absolutely. Do I expect everything to be rosy or routine all the time? Nope, or I wouldn't have seen the doctor in the first place. I am currently in the care of a hematologist who, after having had several blood clotting events, discovered I had a genetic mutation that predisposes me to several blood cancers. It hasn't reared its ugly head yet, but it will. After being told about the mutation and not much else, I did the Google thing. There is so much info out there that will make your head spin and spew green stuff, lol! But it gave me a wonderful opportunity to discuss cause, effect, treatment options, symptoms to watch and what the future MAY hold. This discussion may have been inconvenient to my doctor who kept telling me to not worry just yet, but it was calming to me. I am the type person who does so, so much better when I know what to expect. It isn't as scary to me although I am not without concerns. It certainly put into perspective my need to get things that I have been putting off done now and that ain't a bad thing! I am my own advocate and info is power is my philosophy.
My hematologist submitted blood at a lab for 5 genetic tests after I suffered my 2nd blood clotting event. When the tests came back positive for the JAK2 mutation, I was called with the results. Since I have to see him every 3 months, my next appointment was coming up. I try to be proactive about my health care so I had plenty of time to do some research on what that meant and to develop a list of questions. My original research indicated polycythemia vera, essential thrombocythemia and leukemia. Since nothing had developed one way or the other since those lab results were originally performed a little over a year ago, my hematologist asked to re-perform and submit to a different lab to be sure the 1st test was or wasn't a false positive. I just got the results of the 2nd test this week.. It'll be another 2 months before I go back so I thought I'd look things up once again to refresh my memory and/or see if things have changed (treatment, progression, etc.). This was the 1st time I noted that the JAK2 mutation can develop into multiple diseases that are ALL classified as blood cancers. Previously, I thought only the leukemia was a cancer driven disease. In addition, myelofibrosis raised its ugly head in this 2nd search. I am, at this stage, trying to develop a new list of questions. I feel that the experiences of persons already dealing with this will help me be proactive in understanding what is to come and to really partner with my doctor in managing the mutation. I don't usually stress over things like this once I know what I'm dealing with. For me, in this case, information is power. So thank you for providing those additional links and anything else you may think would help me understand what may come. My hematologist has my confidence, but I'm usually the one to bring things up and ask questions. He gets tickled with me, but has been straightforward with answers.
Have JAK2 mutation verified twice; one year apart and from different labs. As I understand, it may cause polycythemia vera, essential thrombocytosis, or leukemia. My hematologist has not provided any real info on this mutation so I've been researching via internet. I knew leukemia is cancer but was disappointed to find out today that the other 2 are blood cancers as well. I have been seeing a hematologist every 3 mos. about this since my 2nd blood clotting event in 09/2016. To date, all my blood factors have been in the normal range. Here are some of my questions: 1. Is it typical to verify this mutation well before it triggers one of these diseases? 2. I know early detection of cancer can be a real plus, but is there any research or experience that supports proactive steps that can be taken to deter the onset of any of these possibilities? 3. With polycythemia vera and essential thrombocytosis, is blood letting the primary treatment? If so, can the blood be donated? 4. Since none of my blood factors have ever been out of the normal range to date, no specific result of the JAK2 mutation has raised its ugly head. Is this normal? I'm not typically a worrier. In fact, I do really well with things like this once I know what I am dealing with. Information becomes my sword which allows me to take worry and nip it in the bud.