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JAK2 Mutation - Effects and Questions
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.
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After reading that so many JAK2 people experience being weak or tired, and have balance issues, now I wonder if I can attribute my similar symptoms to the disorder. I tell people that my balance issue can be described as having been on a cheap drunk without having the pleasure. And I now tire easily. So now I’ll discuss this with my hematologist next week.
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1 ReactionMy JAK2 Mutation was discovered 11 years ago, quite by accident. I never had any symptoms. (My hematologist told me that for many, the only symptom is death, by a blood split in the brain, heart, or lung!). My original platelet count was close to a million! I’ve been taking Hydrea daily ever since, with no side effects from the drug. However, over the last couple years, my count has fluctuated between 450 to 800. My dosage is adjusted and rechecked again in 4-6 weeks. It’s possible the Hydrea might be losing its effectiveness. I worry that another drug cost or copay might be astronomical! If only a cure could be found. I’m 76 now, and other than arthritis, am in very good health.
Hi Barbie......I have jak2.....myeloproliferative neoplasm, I believe it is similar to pv. Chronic fatigue most of the time, poor balance and occasional nausea. When I feel weak I try to rest often and for at least two hours at a time. I usually go to bed by 6 o'clock just to relax and watch tv
I am tired some in the morning but otherwise once I get going I’m ok. I wonder if it is your BP meds making you tired? How’s your diet? Do you take any supplements?
Is anyone in this group from Maine???
Even though you take hydrea six days, do you still
have symptoms of PV? If so, what are your symptoms and how do you handle them?
Hi Barbie 75....I also have jak2 and take 500mg Hyderabad six days a week. I still have extreme fatigue so I just take the time to put my feet up and rest my body or get right into bed. This seems to work. Mornings are the best part of my day but by noon I feel weak. Good luck
Seems to me that the normal platelet range is between 200 and 400 so if your platelet count fell to 163 your Hydroxyurea treatment plan may be overly aggressive. Time to have a discussion with your Hemotologist or Oncologist. Good luck.
Im recently diagnosed with acquired von Willebrand and Jak2, my platelets are around 600. I was put on 500mg Hydroxera then 3 weeks later 1000 mg of Hydroxera in APRIL 2019 and by May 5 I had flu like symptoms, fever 101.3, body ache etc. I stopped taking it for about 10 days was put back on and in 48 hours the symptoms were back. So Im one of those rare people who is allergic to Hydroxy. Interestingly my platelets fell to 163 with a 1,000mg dose. Is it possible that I was over medicated and that caused the reaction? It is clearly the best option as Allegraride may cause ventricular arrhythmia and Interferon makes people feel like they have the flu. My hematologist is not as concerned about bleeding as the blood clots that may result from the Jak2 mutation. My echo was great and Im otherwise healthy active and fit. Of interest to me in these discussions it is possible to have ET/Jak2 and not express disease. Is that true for Acquired Von Willebands/Jak2?
I don’t get overly fatigued but the Hydea does give me an upset stomach that lasts for 30 minutes or so. I force myself to go to the gym for 60 minutes 4 times per week. My MDS/MPN is currently under control but I also have 4 leaky heart valves. Two minor and two mild-to-moderate. I get an echo every six months to check on those leaks. My blood cancers were most likely caused by exposure to toxins at Camp Lejeune, NC as the drinking water there has been contaminated since 1954. I was also exposed to dioxin (Agent Orange) in Vietnam. I assume the same toxins that caused my blood cancers may be responsible for the damage to my heart valves. Guess I’ll never really know. I also share something you have. I have neuropathy of both my feet. I was diagnosed with HSN Type 1 years ago. HSN is hereditary neuropathy which runs rampant in my family. Comes down on the X chromosome so thank you mom and grandma. I do get fatigued but I know I have to keep moving. I don’t have high BP so I can’t offer you any advice on that. I assume your doctor will tell you to excercise, excercise, watch your weight and watch your diet. Good luck with your treatments