ET: What are acceptable platelet numbers?
As I am reading, it seems that there is a wide range of acceptable platelet numbers. I have been dealing with ET SINCE 2019. The highest my number has been was 603 after 2 bouts of Covid within 3 months. My dr. Wanted to put me on Hydrea and due to scary looking side effects, i declined. After watching for several months my numbers came back down to the lower 500’s. 537 of this week and once again I had covid mid Feb. Seems my Hemotoligist magic number is 500. He keeps encouraging me to take the Hydrea. I am a healthy
72 year old and I still work and am active… so I am hesitant to take a med that may alter my quality of living. I do understand the risk.
I am just curious about the numbers that your Dr’s find acceptable,
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I am 78, years old and have large granular Lymphocyte Leukemia that I believe was caused by the vapor from Okon driveway sealer which I still have two gallons of in my garage. I followed all instructions in using this product. In my opinion this product should be take off the market because it is too dangerous to use. Have been going to an oncologist for about 1.5 years and have only taken methotrexate with no improvement. Does anyone know the published effectiveness of methotrexate? I don't think the product is worth taking and am thinking of changing oncologist.
I am an 80 year old female with ET. I have been on hydrea for over 10 years. My last count was 360. I have only had some minor side effects and am active. Personally I would rather have some side effects than be at risk for a stroke
LabCorps states anything above 450 is high. My platelets are in the low 500s and my hematologist is okay with it. I am a getting a lot of headaches which I understand can come along with both ET and Hydroxyurea. So i am only taking 500:mg Hydroxyurea three days a week and very hesitant to take additional doses.
Best wishes, Eileen
Hi there,
Thank you, for sharing your opinion. I was prescribed HU at 500х2 a day , after 2 weeks of taking it I had a severe reaction, chills and shakes with a very high temperature. Tried it again with a lower dose with the same reaction. I had to stop it. My numbers are just over a million. I feel fine without taking anything . Just baby aspirin once a day. They want me to try anagrelyde next. I am so hesitant to take it too. Side effects scare me. The major factor is that I am over 60.
Hi there, my friend is a hemotologist/oncologist( though retired now) says that 700 even though high but somehow acceptable number in my case. I have just over a million. I had a bad reaction to HU, switching to anagrelide.
My hemotologist haven’t actually set the goal number for me yet. I think , if anything works , I would be happy with 700, any number less than a million.
Hope anagrelide will work for you!
So glad you have an oncologist you can trust!
My number is 50, also.
At 56 years old, and around 750 I'm still just taking low-dose asperin. Doctor says that, as I'm under 60, anything less than 1,000 is not high risk.
Your "acceptable" number may vary depending on age, clot history, and driver mutation. If you are under 60, no clots, and have CALR mutation, doc may be good with anything under 1,000. If you have JAK2, history of clots, or are over 60, doc may want you under 450.
Doctors try to start dosing low to avoid side effects. HU seems to be what most people can tolerate best, but people do differ and some people can't tolerate it.
I take 500mg x2 a day for a high white cell count for over 6 weeks now. No bad side effects. Brought down my white cell count from 50 to normal within 2 weeks. All my other counts as well are good. I don’t need to start chemo treatments at this time.