I have JAK2 ET and MPN: Anyone else have these symptoms?

I was diagnosed with ET and I do have the Jak 2 mutation. Leading up to my diagnosis I had elevated platelets and absolute lymphocytes for approx 2 yrs with my referral being “overlooked” multiple times. I had been having mild to moderate headaches daily, extreme fatigue, nausea, dizziness, chest pains, palpitations, pain in my hips and down right leg. I had additional bloodwork done, abdominal ultrasound, and bone scan. The bloodwork is how they found the Jak2 mutation, bone scan was normal, ultrasound showed some lacerations on kidneys, but doc said that was no concern. He cancelled the bone marrow biopsy, told me he wasn’t going to treat me for now and to take a low dose aspirin daily. I’m wondering if I should get a second opinion. I just turned 46, have 6 children, a wonderful husband and want to enjoy as much life as possible without all the side effects. I won’t let them stop me though, we have started a workout routine again and I try to do as much active stuff with the kids as I can! Since starting the aspirin, I have had an increase in the headaches, and almost constant ringing in my ears.

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I was diagnosed with ET and I do have the Jak 2 mutation. Leading up to my diagnosis I had elevated platelets and absolute lymphocytes for approx 2 yrs with my referral being “overlooked” multiple times. I had been having mild to moderate headaches daily, extreme fatigue, nausea, dizziness, chest pains, palpitations, pain in my hips and down right leg. I had additional bloodwork done, abdominal ultrasound, and bone scan. The bloodwork is how they found the Jak2 mutation, bone scan was normal, ultrasound showed some lacerations on kidneys, but doc said that was no concern. He cancelled the bone marrow biopsy, told me he wasn’t going to treat me for now and to take a low dose aspirin daily. I’m wondering if I should get a second opinion. I just turned 46, have 6 children, a wonderful husband and want to enjoy as much life as possible without all the side effects. I won’t let them stop me though, we have started a workout routine again and I try to do as much active stuff with the kids as I can! Since starting the aspirin, I have had an increase in the headaches, and almost constant ringing in my ears.

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I do not have ET but I do have PV. Your ET is one of the three Philadelphia chromosome-negative Myeloproliferative Neoplasms, ET, PV, and MF. I just call mine PV for short. I was diagnosed with PV after having a very high platelet count during a doctor's visit. After having the most detailed blood testing of my life, I was diagnosed with PV with the Jak 2 mutation. I thought with a genetic mutation I would have superpowers like Spiderman but those abilities never arrived. I have been taking Hydroxurea twice a day at 500mg. along with baby aspirin. Four years later and this PV has not had much of an effect on me. I have fatigue late in the afternoon and at night so I do all my important activities in the mornings. I go to my gymnasium 3 times a week and stay active. I think this helps immensely. I too have ringing in the ear but I am sure that was from my field artillery days in the army. Other than getting tired at night, I have little if any pesky symptoms to slow me down. I wish you the best,
James, 63 and enjoying life to the fullest

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I do not have ET but I do have PV. Your ET is one of the three Philadelphia chromosome-negative Myeloproliferative Neoplasms, ET, PV, and MF. I just call mine PV for short. I was diagnosed with PV after having a very high platelet count during a doctor's visit. After having the most detailed blood testing of my life, I was diagnosed with PV with the Jak 2 mutation. I thought with a genetic mutation I would have superpowers like Spiderman but those abilities never arrived. I have been taking Hydroxurea twice a day at 500mg. along with baby aspirin. Four years later and this PV has not had much of an effect on me. I have fatigue late in the afternoon and at night so I do all my important activities in the mornings. I go to my gymnasium 3 times a week and stay active. I think this helps immensely. I too have ringing in the ear but I am sure that was from my field artillery days in the army. Other than getting tired at night, I have little if any pesky symptoms to slow me down. I wish you the best,
James, 63 and enjoying life to the fullest

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Yes, i'm dealing with JAK 2 mutation, had a biopsy which confirmed MDS/MPN syndrome. I take one 500 mg hydrea capsule on MWF ONLY to keep blood and platelets in balance. Get tried in early afternoon into evening.

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I am 77 and was recently diagnosed with JAK2 ET in September of this year and have had the red feet and ankles. I also have red splotches (for lack of a better word) on the back of my left leg. These are not painful - just unsightly. I have a small level of numbness in both feet and in my left leg. These things are recent. My hematologist/oncologist prescribed hydroxyurea 500 mg daily. I had no side effects the first month. I had a bone marrow biopsy and it was confirmed, that indeed, it was the ET JAK2. My platelets went from around 600 to normal within 10 days of starting the hydroxyurea. I was thinking all was great......then the sores in and on my mouth appeared and my doctor took me off the meds for a 5 day period and I am to start taking the hydroxyurea every other day. It has taken a toll on me - It was difficult to eat and swallow. I still continue with the low dose aspirin which I was already taking when I was first diagnosed. Now I am terrified to go back on a full dose of the hydroxyurea for fear of the mouth sores. This is all so new to me. Has anyone else had problems with sores in their mouth?
Ginger

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