Yes - I am frustrated but understand doctors often don't see ET as a problem because most of us don't die from it. What I don't understand is this - if high platelet counts don't have any correlation with blood clots, why should I take a chemo (hydroxyurea) to reduce my platelet count? Interferons are very effective (potentially reversing the disease - still studying this) but since they are so expensive, good luck having your insurance company cover it. I get that Drs. want to focus on AML and MF because they can shorten your life span significantly, but I really don't want to take chemo just to make a doctor feel better that my platelet count is lower. I am trying to get my head around taking chemo when I don't feel that badly most of the time. They know so much more than they did 20 years ago when they didn't know about JAK2 much less CALR and MPL - but really they still don't much about this disease. Research takes time I guess but it's important to consider that every med has side effects - and not all of us will benefit from taking them. Best thing we can do is keep exercising, eating well, getting good sleep and support each other mentally so this disease doesn't get us down. Thanks all for caring and supporting each other!

I concur with what everyone said. It seems docs just think “oh take a chemo drug it’s not a big deal.” Every time I put one in my mouth I wonder how long this will work and am I poisoning myself. Yes I am. I think this drug is 75 years old. I have ET and from what I read I have to fail on hydrea or progress before I can have other options. Whole thing is miserable so I try to just live and forget it. I’m lucky I guess because I’m 79 and only got diagnosed two years ago. This felt good to vent. Thank you for starting this thread

I agree with frustration with lack of treatment options, but much research work is being done in that arena. I am in a clinical trial for new dosing regimen for Besremi through my MPN specialist at MD Anderson. My counts look promising, but still dealing with iron deficiency and now anemia. We’ll get the dose right eventually. However, I am frustrated with the lack of interest of local oncologists in other in usual/unusual symptoms I have experienced because of the disease - phlebitis, fatigue, lack of concentration, high allele burden, inflammatory skin issues, etc. All are related to the disease and should be monitored. All she seemed to be interested in was the Hct and even with that did not seem that concerned when above 45. I guess I did not “look” sick on the outside but crazy things are going on on the inside! It helps to be seen by an MPN specialist.

Frustrated that for a group of illnesses known for a while now there is no approved medication to prevent or treat progression. That there is no cure, other than SCT when progression to high risk myelofibrosis or AML happens.
Frustrated that there is no specific treatment for ET other than medication aiming at reducing blood counts. It just prevents complications, but it is not treating the underlying illness.
Even worse, there is so little research on hereditary thrombocytosis that there the treatment options are almost none except for maybe interferons.
People talk about optimism, but we are still not seeing research on effectively tackling the mechanisms behind MPNs.

Yes, I am frustrated. I feel my hematologist downplays my symptoms and the cancer itself, (I am very aware that there are worse cancers to have); especially the bone pain I have. My platelets are only in the 500k range and I'm only on aspirin. My bone pain is getting worse. I have been worked up for other causes for it, but all negative. BTW, I am triple negative. I take a low dose opioid and it helps, but I wake up at night with pain almost every night. The doctor goes only off my numbers. I have had this for at least 15 years. How would I know if it has progressed? Only one bone marrow biopsy 7 years ago. He spends 2 minutes with me and says see you in 6 months. No specialist in my state of KY. I feel the medical community focuses on treatment for Myelofibrosis and PV, but really don't see anything other than chemo drugs and a few others for ET. Why wait until ET progresses? Believe me, I thank God every day, as it could be so much worse, but yes, it's frustrating. Thanks for listening for the rant of the day! 😅