Anyone living with Essential Thrombocythemia with JAK2?

@dmcj I think that is a fantastic idea❤️

@dmcj YES! I highly recommend seeing Cecilia Yi at the MPN clinic at Mayo in Pheonix. She is super smart on the disease and will give you a good trajectory for your daughter. I was diagnosed with ET Jak2 when I was 33 just after having my second child. I am now 68 and have lived a long life on Hydroxyurea, just recently increased to 1000mg/day as my counts were not staying down on one pill a day. I saw Dr. Yi at Mayo clinic and she recommended Jakafi based on my blood work and bone marrow aspiration that was done there. Its not cheap! My portion after insurance was $7500, which I am glad to make payments. I started Jakafi a couple days ago and am happy to report less fatigue and less hair loss. Still getting skin issues, but I live in Hawaii and am in the sun too much. Its worth the trip, to find out from an EXPERT on the disease! Most Local Hemo/Onc do not deal with this disease that often so they tend to take a "wait and see" approach. Good luck! Eileen from Honolulu

@leene808

Thank you so much for all of this information. We were advised to go to the MPN center at the Mayo in Minnesota. I am calling them tomorrow. I will follow up

How have you dealt with this for so many years? My daughter had to quit her job. Her symptoms off the drugs are very bad that is why she went on but being on them is so very much worse. She has no life

@dmcj well before I got on the medication I was having severe symptoms as well. TIA’s horrible migraines, difficulty breathing. I didn’t have a diagnosis yet until they did bloodwork so once the blood counts came down with the medication thing started to level out I’m sure getting an opinion from Mayo Clinic will help figure out what’s right for her. You’re doing the right thing. I hope she finds relief. I’m a nurse and I did work through the whole process at the hospital, but I ended up quitting after five years and I’m now doing something less strenuous.

@leene808 I have attended a few symposia abt ET and ran an online support group for pts before there was much online help. So I met a lot of fellow patients. It always seemed to me that younger people (under 40) seemed to have the worst symptoms. Did your Mayo doc happen to talk about this since you were young when diagnosed?

Seems so unfair that the ailment is manageable for those who are diagnosed at 50 or 60, but has some serious symptoms for those who are in the midst of work life and raising young kids.

@debhammel ,, hi I too am on same regiment and do suffer with headaches often as well .. last check my numbers were good .. thank the Lord

@dmcj there are several MPN specialists at Mayo, Rochester. Getting another opinion makes a lot of sense at this point.

@nohrt4me hello there ! she did not mention that being younger would mean worse symptoms. She was just amazed at how long I’ve been dealing with this. I asked her if she had any other patients who have had this disease for as long as I’ve had and she said yes, and that made me feel a little better about my future. When you get to this point, it’s always a question about how much longer you have but 20 years ago I knew I was gonna live at least that long. It’s a chronic disease manageable with medication and healthy lifestyle and I don’t have the TIAs or the migraines anymore, so I’m grateful that I got my platelets down.

@leene808 I think one of the questions researchers are trying to answer is at what point can the mutation be detected before platelets start rising. The theory is that the mutation may occur many years or even decades before ET becomes evident.

Anecdotal info only, but I've met a number of women like me with a history of miscarriage who then started running high platelets in their 50s or 60s. Women with ET do seem to miscarry at higher rates, but maybe only correlation, not cause.

Glad to hear you are holding your own without TIAs and headaches! It's been 18 years for me, 8 on HU. So far so good, but I am 72, so didn't ET wasn't "active" when I was young, except maybe the miscarriage mysteries.

Hi, @bobbiejo80 Sorry to hear you’re also a headache sufferer with hydroxyrea. You mentioned you’ve been able to back down from your original higher dosage to now just 4 days a week. Did the reduction help with the daily headaches?