Essential Thrombocythemia: Looking for information and support

Thanks for your welcome Lori!

Following the first appointment with my haematologist, I had more blood tests including some for a research program run by my haematologist (he is also a research scientist).
He told me that some results would be available when we meet next in September, others (DNA tests) may take up to six months. He said we would meet every three months for the time being but I don't know how often follow up blood work will be done. I assume it partly depends on the initial test results.

My hemo followed the same plan when I went on HU 6 years ago. I am 70, CALR+, same dosage as you.

My platelets run between 425 and 475, and doc considers this "very stable." She isn't anxious to add more HU because CALRs seem to have fewer clotting episodes, and my other stroke factors are low ( low cholesterol levels, on aspirin, well controlled hypertension).

So lesson learned: We are all different, and treatment goals and dosages are more likely to be adjusted to the individual. And that's really a good change from 25 ago, when my dad was diagnosed with ET.

I do think that ET exacerbates the effects of aging. When I compare myself to my friends (which I try NOT to do), I seem to have less energy and general stamina, and more frequent nuisance-type problems (dizziness, headaches, skin and hair dryness and irritation, brain fog). In older age, though, I have a better mental attitude, and I can push through the nuisances better than when I was younger. So there's that.

I was diagnosed with ET jak2 mutation a yr ago june..My plts range between 450 and 680 ..My hematologist has me on 2 baby aspirin a day and doesn't want me to start HD until they hit 1000 ..thoughts?

I am 65 years old and seem to be a rare male here. Not surprising since Essential Thrombocythemia affects twice as many females than males. Also I guess most males are not big on 'sharing'. 


I was diagnosed with ET JAK2 in June following routine blood tests. 
I have already been taking 100mg of aspirin daily for a couple of years due to my family history of cardiac issues.
I have not had a bone marrow biopsy as my haematologist said it would not change the current treatment though I may have to have one down the track depending on my blood results.

Looking back, I have had intermittent headaches for no apparent reason and assume now they were ET related. Who knows?


I am grateful to you all for your openness and honesty and appreciate your comments and suggestions.

Hi ladies! I am 52 and was diagnosed in 2022 with E.T. and after my bone marrow biopsy, I do have the Jack2 mutation. I have been on Hydroxurea for almost 2 years and have had no side effects. I now go every 3 months for lab/blood work....the first year I went every month and only took 1 (500mg) of Hydroxy to see how my body would handle it (in 2022 when diagnosed, my platelets were over 850) and after about 6 months, my platelets were not dropping as much as expected (in the 700 range), so she added 2 (1000 mg) once a week and 1 (500 mg) the rest of the week for 5 more months (stayed in the 650 range). My platelets dropped gradually, so she added 2 (1000 mg) twice a week and 1 (500 mg) the rest of the week for another 6 months and platelets were still higher than expected, but she was making sure adding the dosage was not affecting my body, since it has not, (thankfully), I am now on 2 (1000 mg) 3 x a week with 1 (500 mg) dosage the rest of the week and I am now going every 3 months for labs/Dr visit and my platelets are now in the high 400 range, which is amazing! We are still trying to get them in the 200-400 norm range, but considering I am almost there with this dosage of Hydroxy, I am thankful and blessed. This will be a lifelong med for me, and she may have to adjust every so often how much, depending on how my body is responding to the dosage (like blood pressure meds and those types of meds you have to be monitored because it fluctuates like our platelets), but at least I know that I am as safe as I can be as far as my blood goes, from having a heart attack, stroke or blood clots with Hydroxy! It certainly is a very scary situation to have your body (blood) deceive you in such a way, but thank goodness for our medical professionals and current data that we have these amazing people helping us and guiding us and our bodies to help us on our journey!

Hi ladies! I am 52 and was diagnosed in 2022 with E.T. and after my bone marrow biopsy, I do have the Jack2 mutation. I have been on Hydroxurea for almost 2 years and have had no side effects. I now go every 3 months for lab/blood work....the first year I went every month and only took 1 (500mg) of Hydroxy to see how my body would handle it (in 2022 when diagnosed, my platelets were over 850) and after about 6 months, my platelets were not dropping as much as expected (in the 700 range), so she added 2 (1000 mg) once a week and 1 (500 mg) the rest of the week for 5 more months (stayed in the 650 range). My platelets dropped gradually, so she added 2 (1000 mg) twice a week and 1 (500 mg) the rest of the week for another 6 months and platelets were still higher than expected, but she was making sure adding the dosage was not affecting my body, since it has not, (thankfully), I am now on 2 (1000 mg) 3 x a week with 1 (500 mg) dosage the rest of the week and I am now going every 3 months for labs/Dr visit and my platelets are now in the high 400 range, which is amazing! We are still trying to get them in the 200-400 norm range, but considering I am almost there with this dosage of Hydroxy, I am thankful and blessed. This will be a lifelong med for me, and she may have to adjust every so often how much, depending on how my body is responding to the dosage (like blood pressure meds and those types of meds you have to be monitored because it fluctuates like our platelets), but at least I know that I am as safe as I can be as far as my blood goes, from having a heart attack, stroke or blood clots with Hydroxy! It certainly is a very scary situation to have your body (blood) deceive you in such a way, but thank goodness for our medical professionals and current data that we have these amazing people helping us and guiding us and our bodies to help us on our journey!

Hi ladies! I am 52 and was diagnosed in 2022 with E.T. and after my bone marrow biopsy, I do have the Jack2 mutation. I have been on Hydroxurea for almost 2 years and have had no side effects. I now go every 3 months for lab/blood work....the first year I went every month and only took 1 (500mg) of Hydroxy to see how my body would handle it (in 2022 when diagnosed, my platelets were over 850) and after about 6 months, my platelets were not dropping as much as expected (in the 700 range), so she added 2 (1000 mg) once a week and 1 (500 mg) the rest of the week for 5 more months (stayed in the 650 range). My platelets dropped gradually, so she added 2 (1000 mg) twice a week and 1 (500 mg) the rest of the week for another 6 months and platelets were still higher than expected, but she was making sure adding the dosage was not affecting my body, since it has not, (thankfully), I am now on 2 (1000 mg) 3 x a week with 1 (500 mg) dosage the rest of the week and I am now going every 3 months for labs/Dr visit and my platelets are now in the high 400 range, which is amazing! We are still trying to get them in the 200-400 norm range, but considering I am almost there with this dosage of Hydroxy, I am thankful and blessed. This will be a lifelong med for me, and she may have to adjust every so often how much, depending on how my body is responding to the dosage (like blood pressure meds and those types of meds you have to be monitored because it fluctuates like our platelets), but at least I know that I am as safe as I can be as far as my blood goes, from having a heart attack, stroke or blood clots with Hydroxy! It certainly is a very scary situation to have your body (blood) deceive you in such a way, but thank goodness for our medical professionals and current data that we have these amazing people helping us and guiding us and our bodies to help us on our journey!