Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!

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sand103 | @sand103 | Apr 20, 2023

In reply to @sand103 "Ugh I was put on 500 mg. To start more labs,1000 mg… now on 1500 mg..." + (show)

Need to say they were in the 900’s

jewelfaux | @jewelfaux | Apr 20, 2023

In reply to @sand103 "Ugh I was put on 500 mg. To start more labs,1000 mg… now on 1500 mg..." + (show)

You and I are pretty much in the same place I also take 1500 mg of hu daily and a full dose aspirin. I was diagnosed last October. My platelet count is almost the same as yours. I am 74 years old.

sand103 | @sand103 | Apr 20, 2023

In reply to @jewelfaux "You and I are pretty much in the same place I also take 1500 mg of..." + (show)

I’m 63. Did you get tested for Jak-2 mutation?

jewelfaux | @jewelfaux | Apr 20, 2023

In reply to @sand103 "I’m 63. Did you get tested for Jak-2 mutation?" + (show)

Yes, and I'm positive.

jleshe447 | @jleshe447 | Apr 20, 2023

I just found this 'connect'. I am 63, was diagnosed with ET when 58. Took low dose aspirin for a couple of years. Then, I developed a clot in my femoral artery. I am now on 1000mg of Hydroxurea 6 days a week, and 1500mg, 1 day a week. Platelets are under 300 and stable. Very few side affects on meds for me. discolored nails, fatigue, so I feel lucky. Also taking 325 mb of aspirin to keep blood from getting sticky. The clot was very scary. It dislodged, and went down my leg and landed in the top of my foot where it was stuck. My foot was changing colors......... Again, I was very lucky. Went to ER and then Vascular surgeon who did testing. He prescribed and Xarelto in two weeks it dissolved. Now, I watch for symptoms all the time. I'd guest I'd rather have med side effects, than the unwanted chance of another clot somewhere. Appreciate you all.

remo1110 | @remo1110 | Apr 20, 2023

I have been on hydrea for three years now. My platelet count went from 676000 down to 426000.
The medication causes no side effects . It works.

claire39 | @claire39 | Apr 21, 2023

In reply to @klcc "I am about to start taking Hydrea. I wonder if taking it just before bed would..." + (show)

I have been taking .Hydrea for 4 years, for ET. My Hematologist said to take them before bedtime and it would lower the risk of nausea. It has worked well for me. Good luck

nohrt4me | @nohrt4me | Apr 21, 2023

In reply to @eileen11108 "If your platelets are only in the 500s I personally would not want to start with..." + (show)

Unless there is a need to get platelets down very fast, hematologists now try to start patients at a low dose and work up. This reduces side effects. I was in 800s and started with 500 mg per day. After a year, platelets had gone to 600s, and another 500mg dose was added 3x per week. I stay in the 400s now, and hemo says that's fine.

That said, we all have different clot risks based on age, smoking, mutation type, etc. So there is no one size fits all dosing strategy.

I do think that somebody in the 500s prescribed 1000 mg right off the bat should certainly ask why they couldn't start with a lower dose and work up as needed.

bonnieshaffer | @bonnieshaffer | Apr 21, 2023

I was diagnosed with MDS in 2021. In March 2023 my platelets shot up to over a million. My doctor ordered a blood test and I am JAK2 positive. They say it's very rare and weird that this happened.

I started taking 1000 mg of Hydroxyurea daily. I was so so scared to start taking it, but I have had absolutely zero side effects. I am so thankful.

My platelets are very slowly coming down. Was 1179 and now 1063. This is over the course of a month or so.

Just had another bone marrow biopsy and am waiting for results.

Best of luck.

bevjg | @bevjg | Apr 21, 2023

In reply to @klcc "I am about to start taking Hydrea. I wonder if taking it just before bed would..." + (show)

Don't assume your will have side effects from Hydrea. My platelets were 600s for 10 years and hemotologist just watched it. No treatment. Then I ended up in hospital with serious pulmonary embolisms. New hemotologist tested for JAK2 and it was positive. Immediately began 500 mg of Hydrea daily. Now in normal range with no side effects BUT I do have serious condition resulting from the PEs. Do what needs to be done to prevent PEs!!!!!!!!