Essential Thrombocythemia: Making treatment decisions

I am a mask-wearer at all times. I am usually the only mask-wearing person in stores but better safe than sorry. Yes, we can have a normal life span if we have ET. I also developed kidney disease at age 5 and if I catch a cold, I have to get a prescription for antibiotics right away or my kidenys fail.

My hematologist at University of Chicago Hematoloty and Oncology told me repeatedly "ET is not cancer" again and again and again.

Yes, it is always nice when we settle into a routine. 🙂

It can be hard at times to think positive. It’s scary at times.

Hello
Wow your numbers are really high! I’m 55 will turn 56 next month. I started on Hydroxyurea once daily in and went from 842,000 to 510,000 from Nov 23 to Dec 23. I go back at the end of Feb 24. I’m curious to see where my count is currently. I had a rough time deciding to take it as well.
I do not like the medication, I’m already tired, now hot flashes, weight gain, with a little dizziness. At this point I’m dealing with medication, not blood clots or strokes. Research and ask questions! Here to the Best for all.
PS I’m curious about the COVID shots! I found out through routine blood test after 2 years of Covid shots! 🧐

Hello,
Regarding your concern about Covid Vaccine, My mom's platelet level raised 200,000 more after getting Covid Vaccine recently. The condition was plateaued for 3 years and we were so happy, but after these vaccinations it jumped up! so be cautious about taking Routine Flu ,Covid, and RSV Vaccine. Besides, I heard if you take Hydroxyurea, you need to take it all life long. I am wondering if you can discontinue it after reaching to safe level platelets.
I wish the best for all!

Hello,
My mom diagnosed with ET around fours years ago and she is in high risk category. Unfortunately, recently her numbers raised up to 995,000 and we believe it's the time for her to start hydroxyurea. I was wondering if we can postpone this medication with following specific diet or having anti inflammatory medicines or any recommendations regarding after care of taking this medicine.
I really appreciate for any suggestions, and I wish the best for all.

Have been on hydroxyurea for 7 years. I cut my dose to half for the first 5 years but then my platelets went up and up. I cut back occasionally with doctor guidance when my red and white cells dip too low but always need to go back on as my platelets shoot up again. Sorry.

Hello,
I started Hydroxyurea 2 weeks ago. My count was at 1,277,000 and is now 1,018,000 with no side effects.

I've had all 6 covid vaccine shots, with no increase (or decrease) in platelets. Shingrix (shingles vaccine) lowered my platelets for a month or two, I'm too risk adverse when it comes to strokes or heart attacks from blood clots, I'd rather stick with the HU to keep my platelets within normal range.

At that level, she is very close to the danger zone - where her risk for life-threatening clotting issues increase (heart attack, stroke, pulmonary embolism, etc.). It may be worth exploring other options once her platelets are lowered but for now, my opinion (and I'm not a medical provider or an expert by any means) is that she start on the Hydroxyurea. Her doctor will carefully monitor her platelet levels and any side effects and will be able to adjust her dosage as needed. Best of luck to you and your Mom!

there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start on that and see what happens in a couple months..I have never started HD.. I am afraid of it as I actually know someone who had ET Jak2 (like me! ) He went on HD and 6 yr later died from AML! I think there is a black box warning on HD for AML ..It is rare to get, but it obviously happenes ..weird the only person I have ever known to have ET ended up dead from AML ..My Plts run 550-650..I have a recheck on 29th, if they are over 600, I will try lumbrokinase