I am a 68 yr old, originally diagnosed with ET in late 2017. After a Bone Marrow biopsy, turns out I have the next level up...PMF.
Taking Hydroxy for 2 years now. Side effects they can not explain...Purple Toes...seems to occur more in Cold weather....WHAT....I live in Phoenix! Cold is 60 degrees...lol...tried Cryoglobulin tests...negative....standard answer I get is....Might be Hydrea...or just your cancer. In other words they do not know. Get used to that answer! I have been to two top 10 in the world specialists (well for this range of blood cancers because we are a small group) in PHX...at Mayo Clinic and MD Anderson. Neither ever saw Purple Toes before and one of them found only 1 other case in the literature.....never figured out what it was. Doc wanted to try switching to Jacafy...because I do have the Jack2 mutation...I found out it would cost me $7000 a month....SO I thanked her for her Professional GUESS, but insisted on staying on Hydrea. Remember two things 1) Doctors are leading YOUR Team....this is your cancer...OWN it. You get to make the ultimate decision. 2) these oral chemistry are treating Symptoms you may be having....if they were a cure, heck I would find a way to pay $7000 a month. Most recently I have developed lung congestion...confirmed thru a CT SCAN and I am off to a Pulmanary specialist to get his best guess. I will tell you that WHOEVER is treating you probably specializes in some other more prevalent cancer and Really is not up on the latest literature...I forward copies of MPN newsletters to mine. And whomever they refer you to...well...chances are they have never seen your cancer either. So expect a lot of head scratching. In summary, here is what I have learned in two years
- WE have an extremely rare disorder. NOONE specializes in your specific cancer.
- this is MY cancer and I use doctors opinions to form my own decisions. I may not be an expert, but neither are they.
- listen and learn...read and reach out with blogs and groups like this....it really does help. And MOST Importantly...stay positive! You folks with ET are lucky....when mine got stepped up to PMF...I discover a bone marrow transplant was ultimately my only cure!
Then I read internet searches on that and it scared me to death! Turns out Internet is full of old information, which is why you want current literature and conversations with people who have similar type cancers. Finally...GOOD LUCK! I sincerely hope this helps just one person.

I am 73 and was diagnosed with ET following an emergency gallbladder operation back in May 22. I had to have a bone marrow biopsy to confirm the diagnoses. My count was in the high millions. I was put on hydroxyurea…500 mg 2x a day. I am told I will be on it for lifetime due yo my age. My platelets are back in the normal range but not thrilled to be on this drug. Side effects have been few but told to flush the toilet immediately after urinating and close the lid. Anyone else told this.. How does that affect sexual contact with your spouse? I am seeing the oncologist on Monday so may ask him this too…it hasn’t been easy to address these issues with the dr.