Essential Thrombocythemia: Looking for information and support

Thanks for sharing your story
I was diagnosed at 39 and was put on HU and 20 years later was switched to Anagrelide be wise of long term affects from use of HU (mine was skin cancer)
I have not read anywhere about long term affects of Anagrelide leading to Mylefibrosis- does anyone have info on this?

Ocular migraines and migraines and TIAs can be caused by high platelets and/or not taking aspirin. The condition is called microvascular ischemia. Platelets are sticky and cause the blood to clot which is good thing if you get cut or have surgery but in ET we have too many of these platelets so we can have unwanted clotting in vital organs. So if there are small clumping or clotting in the brain or eye or kidney or other vessels we can have trouble such as pain or visual disturbances. In more complicated scenarios loss of vision, heart attack or stroke could occur. That is why the protocol for ET usually involves baby aspirin to prevent clumping and clotting of platelets and some agent such as hydrea to lower platelets. The timing of when to start the platelet lowering agent varies but most often is started either by age (over 60), symptoms such as migraine or visual disturbances or by the number of platelets (this number varies depending on many factors), or by the documented genetic mutations such as JAK2 or CALR. This is a fairly simple explanation that does not go into great detail but is a general overview.
I have had ET since 2002 (yes over 20 years). I was started immediately on baby aspirin but did not start hydrea until age 60. I am now 71yo and doing well. Ask me anything and although I am not an expert, I have a lived with this a long time and have a medical background as a retired nurse practitioner. Stay healthy everyone! And yes, we can stay healthy even if we have been diagnosed with a cancer.

I don’t understand the business of JAK2. I see some have posted here about a sibling link. Is this not a “ random” mutation? I have 2 sisters, one with CLL( chronic lymphocytic leukemia) followed with CBCs, no treatment. Diagnosed few years ago. The other has just had neurosurgery to remove a glioblastoma, bless her, awaiting treatment decisions . Are either of these linked to genetic mutations? We all grew up on military bases both overseas and stateside and lived close to the very active B52 flight line during the height of the Vietnam war. I wonder about exposure to damaging agents. My father in law was stationed at the same base and later developed myelodysplasia followed by Acute Myelogenous leukemia.

As have I. I have had 2 bouts of Covid in the last 3 years. First not treated with Paxlovid, second was rxed. Vaccinated and boosted every 6 months.

I have also wondered if Covid has played a part in my diagnosis of ET.

Hello @Shenrig. I have MPNs or Myeloproliferative neoplasms a rare blood disorder where the bone marrow produces too many blood cells. My platelet count was over 800,000. I don't have the JAK2. Am more susceptible to blood clots. I take hydroxyurea (1500 mg) Mon-Fri and (1000 mg) Sat/Sun and my platelets are now down around 350. I have been taking the hydroxyurea for about 3 years. I have not had any issues with this drug and my Docs here at Mayo Clinic Rochester, MN watch me pretty closely. I am sure they would start you out at a low dose to see how you react. I do get the night sweats and a bit of hair loss but other than that no real side effects.

Hola, que bueno que ya lleves 30 años tomando hidroxiurea. Me siento identificada con vos y ojalá tenga la misma suerte en cuanto a esperanza de vida.
Tengo 42 años y tomo hidroxiurea hace 11, 2 comprimidos diarios más aspirina infantil.
Abrazo!

Aloha @shenriq
I am 67 and was diagnosed with E.T. in 1982.. so been on Hydroxyurea for over 30 years, and had a short treatment with Anagrelide for 7 of those years. The concern back then was the long term treatment with Hydroxyurea would convert me to leukemia so we tried Anagrelide for a while then by Hematologist learned that long term treatment with anagrelide would lead to Myleofibrosis. I have seen Murry Silverstein at Mayo Clinic in 1985 (now deceased) He told me I would live for another 20 years. There is new research now and other E.T. members that have proven that to be a wild guess, because I am still here and its been 30 years. I am still on Hydroxyurea 500 daily. I also take supplements that I think are working to keep my numbers down. Lately i have been having more fatigue than I ever have had, I am also having to start blood letting almost monthly because my current MD likes to have my HCT under 45. No explanation other than high HCT may put me closer to a stroke or Heart attack. My platelets are staying below 500K consistently on Hydroxyurea. No leukemia yet, no myelofibrosis yet, but may be converting to PV soon. Just waiting for the next shoe to drop. Hope that if you do need treatment, you will try the hydroxyurea in order to keep the numbers down. It has worked for me for a long time. Its better than having complications from High platelets.. that is no fun. Mine was over 1 Million when I was diagnosed and I was having horrible headaches and TIAs. Nobody knew what that was because nobody is studying this disease deep enough to have answers and other treatment options.

What I also meant to say is that while my platelets were increasing, so was my incidence of migraines. After menopause I typically had one migraine a year but when my platelets started increasing, I began to have them more frequently. Prior to starting HU I was getting a migraine every 1 to 4 weeks and they magically stopped when I began taking HU in October, 2023, and my platelet levels started falling. I have not had a migraine since!

Thanks for that