Anyone living with Essential Thrombocythemia with JAK2?

@williamsjen
I lost my first husband at an early age, also. He was a Vietnam Veteran, heavily exposed to Agent Orange, and 5 years after we married he was diagnosed with cancer. God gave us 19 years, and healed the cancer but he received a blood transfusion at MD Anderson (no one's fault since they didn't know anything about Hep C in those days) but years later we realized he had Hep C with no cure in those days and he was not a candidate for a liver transplant, though we tried. Died at 45 but he was able to help me raise our two boys. After 4 years of widowhood, I married my now husband. Married now for 28 years. Blessed. I appreciate your sharing your experiences. I think I have said it but I did have a blood clot when they diagnosed me with ET, My platelet count was 1,250,000. Alarming, but God had sent me to a brilliant Hematologist who treated me even while I was on the road (started me out at 5 capsules a day, while monitoring my blood work often and closely from a distance) but monitoring my numbers by email (he didn;t even live in my little town in the middle of Venezuela) and telling me how many Hydrea capsules to take each day until I was able to travel back to the USA and get in with an Oncologist. That was 11 1/2 years ago. I am blessed.

@esperanzam wonderful, this makes me smile that the medicine really works. we were married for 32 years and that is what I tell people we had 32 great years together, he also had agent orange and high blood pressure . we did raise our 2 daughters and son to get them through college. I am truly blessed, another person shared a new medicine that was just approved by FDA. I will talk to my Oncologist on my next appointment. My platelets have been in the 200s for the last year which is where they always stayed on all my blood test. Happy you met someone to continue your life with. I met someone as well, he is a great guy we have been dating for 3 years its different when you have been with someone for 32 years . I am adjusting. have a great day.

@esperanzam
Thank you for your response! I would love the recipe.

@kellysc
Did you get the recipe for my power muffins?

@esperanzam thank you for the words of encouragement. I don't think anyone know the origination of the ET but, my platelet counts were always good until the year after I had the Covid shot. It was a Government requirement. I was always healthy. I cannot complain as I do well taking the Hydrea and the asprin every now and then as I have been blessed with no blood clots. Its just the taking medicine issue as I never took medicine. I just pray to be around to see my grandchildren grow up as I just retired after 43 years with the Government and my oldest daughter is pregnant with her first child (baby boy) at 35 years old. I want to keep him until he is old enough to go to school. I loss my husband at a young age 5 years ago then my mother who lived a good life at 95 years old and took one pill 5mg blood pressure pill 2 years ago , so being diagnosed with a Blood Disorder really set me in a bad mood. however, I am trusting in the Lord that I will live a good fulfilled life. Thank you for your service, my husband was a vet.

@pps26
I was diagnosed with ET in 2023 w/JAK2- numbers are around 600 - I also have the CHEK2 gene mutation - and am adopted so no biological history. ET was confirmed with the bone marrow biopsy. I am 56 and continue to maintain an exercise routine and healthy high protien eating. I do have days that I am pretty tired, and have noticed what I could do before takes a little more out of me - but overall I'm living with the cancer and not letting it interfere with my daily life. I do not plan on taking HU - I will enter the higher risk group once I turn 60, but I take it day by day and try to live healthy. For me this cancer is present but I choose to keep it in the background and while being aware of it, not let it run my life. Good luck with your journey!

@jville42
May I ask why you won't take HU? I am on 500mg daily and I am struggling with the side effects. My bone marrow biopsy confirmed ET with another mutation and concern for MPN/MDS overlap. Have no idea what that could be and have an appt on 9/28 in MKE with another oncologist. I am a high risk 77 yo and until this diagnosis I was extremely active...and now daily life is a real struggle. I also an a caretaker in my home for my former husband with Parkinson's. Sorry ramble however really curious why you won't take HU especially since these side effects are greatly affecting my daily life, thanks so much for reading.

@pps26 I am so very sorry about your current situation. I could not imagine care taking of a human who is very sick. I can barely keep up with the needs of my old greyhound. I am almost 80 and am on 500mg of Hu five days per week. As I have said on here countless times, it is difficult to determine what-is-causing-what at this age. I am tired but also old. So I listen to my body. I get up in the morning 7-8ish, do some work, and by 1pm, am ready for a nap, which i take every day, then I get up and go again, till bedtime 11ish. Tired is the only side effect I can pin on Hu, and perhaps, Id be tired any way.