New to Hydrea for ET

The same thing happen to be my levels were always low, when I saw it went from 324 to 600 in a year i asked the Dr. and she said she was worried about it to wait until next year. Good I went back and had my blood work done the following year because it had went up to the 700s. I had taken the covid vaccination and had shingles all in one year then the high platelets. They are back in the 200s hopefully she reduces my mg when in go back and pray the numbers stay down. I heard the go up and down.

Glad to hear you say that, it is about vanity. I was afraid of losing my hair as well. I haven't loss any hair and to be honest my hair has grown longer. I do use organic hair products as well. I have talked with several people taking HU and they have not loss hair. My oncologist said that it doesn't cause hair loss. Another issue I have notice is skin discoloration I don't like that part of it either but, this could all be worse. If I start to lose hair , she would have to put me on another medicine. Just thankful that my platelets are down to the 200s and I feel good.

Thank you @ williamsjen.

Aloha MW2023.. yes. found you!. I had a trend of increased WBC, HCT and within a month's time. So the increase was very slight, but new. I was diagnosed with ET in 1992.. so 33 years ago. I have been on HU mostly since then and I take an occasional ASA. (twice a week). My doctor does not talk to me so when I asked if I was transitioning to PV he said "no" but why would he recommend Besremi when its not approved for E.T. but for PV right now? I am currently looking for another hematologist that will spend more than 2 minutes with me. The amount of time I was on HU seemed like most of my life, and it works well for me, and one point my Doctor said I was "sensative" to it. We tried it more that once a day and I had too many symptoms. My platelets stay below 500 on one pill a day. If I go off the HU my platelets shoot up to 800 or 900 and I have symptoms. (TIAs, Headaches) My advise is to pin down your doctor and ask if transitioning to PV is normal for an ET patient. I had another blood test two days ago and all my counts went back down, including my HCT. So its the TREND that they are looking at to determine next steps. I wish my doctor would have discussed this more with me as well. It seems they only look at the numbers, and not the patient sometimes. What is the Hormone test they are doing? My doctor did not say anything about doing that. Thanks and good luck.. remember you are the patient and we both need to ask more questions as they run out of the room! Leene

What is HU?

Hydroxyurea. or Hydrea which is a chemo medication you take orally. Very old medication, but seems to work for Myeloproliferative disorders like E.T, and Leukemia.