Have E.T. for the past 11 yrs. On Hydrea and counts fluturate up and down,l Counts hoover between 500-650 and Hyrdrea regulated to usally 500mg twice a day. My last count (off the records) was about 500 and he took me off the hydrea and place on baby aspirin only. I said my counts would go up, and they did to over l mil. I am now back on hydrea twice a day and last plt count was 315. I am over the age of 65. There was no reason for him to stop the hydrea. I was not and not experiencing= any new or different side effects, except for the fatigue. etc.,
Has anyone had this experience..... My next app't is due soon. I am looking into seeing another Hemotologist. , that I discovered, and see that she excepts my insurance company and that is accepts E.T patients.
I look forward to reading your answers and this in this post on Health Unlocked.
My old account that I registered is not no longer in existence. I will probably have to re-register again, and have someone help me with this, I probably might have to register under a different user name.
I don't know if you are CALR positive but I have been reading more and more lately that treatment is not recommended even after age 65 because the risk of clots is so low for us compared to Jak2 positive people. Back in the day being over the age of 65 was automatically considered high risk but that's not so anymore. But of course every doctor is different.
Hi. My sister has ET Jak2 + and had been on Hydroxy and aspirin for about 14 years. About two years ago they took her off the hydroxy and left her just on aspirin and her platelets have been fine.
My understanding is that this is only for ET sufferers and no good for PV like myself.
I wonder why your sisters haematologist made this decision, particularly with her being Jak 2+. That is one criteria for ‘high risk’ also if she’s over sixty that’s another factor? Was your sister having problems with hydrea?
Two years off hydrea and her platelets have remained stable is remarkable.
Hi. My sister is younger than I am at 54. She was told that there is some evidence that aspirin alone can be ok for ET sufferers. They also told her she may go back on to it in the future if things change.
I also was diagnosed with ET Jak2 positive 11 ago when my platelets were about 600,000. My hematologist put me on hydroxyurea right away. Some months later, my platelets went down to normal range around 350,000 and I took myself off the medication and ended up in the hospital for 3 days with a blood clot in my spleen. And platelets were at 800,000. It might be different here in the states, but my doctor likes me to be under 450,000. I now have progressed to PV and I take jakafi, as well. Sounds like your ET is under control now. I would have a conversation with your current hematologist to find out why he took you off hydroxy originally. He made a mistake but it looks like he is doing the right thing now.
Some docs prefer not to use HU due to the inherent risks of the medication. HU is therapeutically weak, so the doc often has to keep you on the edge of toxicity for the HU to reach max benefit. While some people tolerate HU well, others do not. The risk - benefit for each individual is different and may evolve over time. There is also emerging research that indicates that below 1 million, there is no direct correlation between platelet levels and risk of thrombosis. Thrombocytosis + Leukocytosis, however, is a risk factor according to some research. Being JAK2+ may also increase the likelihood of thrombosis as it may increase the likelihood of clotting in addition to increasing hematopoiesis. All of this is based on emerging research and an evolving understanding of MPNs. Not only do each of us have unique needs based on out individual profiles, but different docs have their own treatment preferences and those preferences change over time. Unfortunately with MPNs being such rare disorders the answers are not always clear and the "standard protocol" is not always what is best for any one person. Hope you get the answers you are looking for as you work to manage the ET. All the best to you.
Sometimes hematologists will try taking you off meds to make sure you still need them. Occasionally people can stop after years and their platelet count will stay stable.
My hematologist would temporarily take me off HU when my neutrophil count dipped dangerously low below .80. After a few weeks off for the neutrophils to recover I would restart HU. My normal platelet count was 550-700 on 19HU per week.
My advice is to question your doctor as to the reason behind any change in your meds. I’m sure your hematologist will be happy to explain things to you.
Ask your haematologist what was the reasoning behind this decision. You’re over 60, additionally, if you’re Jak2+ that would be two of the criteria for ‘high risk’ ET.
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