ET: What are acceptable platelet numbers?

I have Large granular Leukemia, and the lowest acceptable by my oncologist is 50.

I am 75 and healthy, still walk the golf courses and enjoy all the activities that I did before my diagnosis of PCV. My platelets run all over the place. 3 months ago my Hemotologist put me on Hydroxyurea 500 mg 7 days a week now I take it 3 times a week. I don’t have any side effects. I like it much better than having a phlebotomy. If you don’t like it, you can always stop taking it.

I'm 69 years old, JAK2 mutation, and diagnosed with ET this past November with platelets around 700. No other risk factors. My hematologist/oncologist prefers to see platelet levels in the 200-350 range for someone my age. Last blood test was two weeks ago and I was at 233. I take Hydroxyurea Monday through Thursday, 500 mg 2x each day which is down from 7 days a week. Side effects have been minimal and tolerable. At the same time, I was diagnosed with microscopic colitis and exocrine pancreatic insufficiency so I had a lot going on. Those two conditions are more or less under control and I have resumed normal activities which include fitness classes at my gym, walking and bicycling. Yes, the side effects look scary but the patient info sheet included with all Rxs list scary side effects - to me, it's a risk/benefit thing and for now I am willing to take the risk to keep my platelets down.

I'm 70, ET, CALR, no history of clots. Likely had it for 15 years. Doc is fine with platelets that run around in the 400s. Once in a while they'll spike to 500, but go right back down, and nobody, including me, gets excited about it. I take 500 mg HU (hydroxyyrea) every day + 500 additional on M-W-F. Doc considers this a low dose. On a daily basis, my scoliosis and allergies are my biggest problems, not the ET or HU.

Have you had a bone marrow biopsy to confirm your diagnosis?

You report 500-600 platelet count. If 150,000 is considered low then you basically have no platelets, does your blood clot?

150,000 is the same as 150. Just diferent units of measurement.

Thanks for the explanation.

I agree with jerrlin. Give the hydroxy a shot. I have been on it from almost 3 years with no issues and it does seem to work well in reducing platelet #’s. Mine were too high and my doc had me on daily doses which brought it down too much. Now taking 4x week and that is keeping me in the low 400’s.

My hematologist would like my level to be about 600-700 but I am very happy staying under 1,000,000. the hydrea makes me extremely anemic and fatigued. I had a second opinion about 12 years ago with a specialist in Boston who said that as long as I don't have any other risk factors (other than being over 60) that staying under 1,000,000 is okay if thats where I feel my best. My platelets spike all over the place.