Recover from ET

[Monkey57]

I heard there are incidences that platelate count goes back to normal without any treatment and is unexplainable. Is that possible?

[Tigger59]

Hi, I asked this question last time I was seeing consultant, my counts at their highest were 573, for the last few years have remained steady around 420. I take low dose aspirin only. My consultant said no , when I asked this question, saying they have tested me, which confirms I have ET jak2, in fact they are looking to start me on Hydroxy in Sept when I turn 60, I will be asking again then too, why I need Hydroxy if my platelets are within the normal range. I will be interested to see any replies on this.

[Monkey57 in reply to Tigger59]

I suggest you should seek for a 2nd opinion. This is like diabetic, if you thru diet and exercise which can control the sugar level, then why it needs to take medicine. Same logic, if the platelet is normal (indeed 420) is pretty good and so why it needs to take chemo. I think your doctor is based on general guidelines that if age over 60, it becomes med or high risk and should take Chemo. But really not make sense if platelet count stable at 420.

[Meatloaf9 in reply to Tigger59]

Hi Tigger, you may want to get a second opinion. I am 69 ET Jak2+ my platelets were 550 a couple of years ago but just had a CBC last week and they were 459. My specialist at Cleveland Clinic recommended that I continue with just aspirin for now. I don't think he believes that everyone should be treated the same. I think he believes more in treating if you are symptomatic, I have very few symptoms so far, hoping that lasts. I would just talk to your specialist about your concerns of taking HU and get a second opinion if you want to. Everyone is different.

[Tigger59 in reply to Meatloaf9]

Thanks meatloaf9, yes my thoughts exactly, I have my meeting in Sept to discuss, so unless they can give me a really good reason to say I need to start Hydroxy then I dont think I will. It just serms to be the trigger in the UK that 60 is the age. I will keep you postef. THANKS

[Meatloaf9 in reply to Tigger59]

Good luck!

[Ovingite]

Hi, I think it is very unlikely given that ET is usually caused by a gene mutation that causes the bone marrow to keep pumping out more platelets than are needed. Once the gene has mutated, there is no going back and it will continue to divide and replicate ad-infinitum, meaning that excess platelets will continue to be produced. All we can do is try to control the platelets through medication. As of now there is no cure, but there is some fantastic new research being undertaken, so never say never!

[Cja1956]

I can only tell you my experience. When I first got diagnosed with ET Jak2 + in 2008, my doctor put me on hydroxy. My platelets were at 600,000. Several months later, they dropped to the 350’s. I went off my meds on my own and ended up being rushed to the hospital with the worst pain under my heart. As it turned out, I had s blood clot in my spleen andmy platelets shot up to 800,000. I never went off my meds again but my numbers have never been that low again.

[clubdino]

I think the reason that chemo is still recommended even though your platelets are in normal range now is because when you have ET your platelets do not function correctly so you are still at risk of a clot.