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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raremiracle2 | @raremiracle2 | Feb 2, 2023

Posted by shenriq @shenriq they put me on 1000 mg hydroxyurea only BCB dropped small rate so put me so gave me hydroxyurea 1500 mg and again (lower little) Doctor will lower it mg hydroxyurea 1000 and then Phlebotomy (give little and take it away) I get heart burn with it. Some one said the heart burn isn't from you medication, it's because you have enlarge spleen and liver (it's all squashed and compacted) But I didn't have heart burn until medication hydroxyurea . Medication are pain and come with side- effects. ( Do's and Don't's - hope you find answers) (prayers) Medication are science experiences.

eileen11108 | @eileen11108 | Feb 1, 2023

In reply to @ttown "The good news....after being off the HU for 5 days and getting my mouth healed, my..." + (show)

Hi ttown,

I also want to suggest you rinse your lips and swirl water around your mouth before taking HU. Then take HU with full glass of water. This way your mouth is coated before taking. It is working for me.

Eileen

ttown | @ttown | Feb 1, 2023

In reply to @nohrt4me "I am really sorry you are having trouble with HU. Could you ask yr doc about..." + (show)

The good news....after being off the HU for 5 days and getting my mouth healed, my oncologist put me back on HU 4 days a week. I take it on Saturday, Sunday, Tuesday, and Thursday. Have been back on for a couple of months now and no more sores and my platelets are down in the mid 500s. I feel good and as long as this keeps my platelets down, I am good with taking the HU.

wiggins32 | @wiggins32 | Jan 27, 2023

In reply to @dee2000 "I am 25 years old and have just been diagnosed with both ET and Crohn’s disease..." + (show)

Hi Dee. I am hoping you have also posted in gastroenterology groups in this web site! Since you have Chrons, it seems both groups may be helpful. Hugs and blessings 🙌

wiggins32 | @wiggins32 | Jan 27, 2023

In reply to @bj87 "Just got home from the doctors. My hct is still 27 which is as high as..." + (show)

Yay! That is super great news on your labs, and that you are feeling well. Oh what a great day it is. 🌞

dee2000 | @dee2000 | Jan 27, 2023

I am 25 years old and have just been diagnosed with both ET and Crohn’s disease I wonder if the two are liked I am unable to take meds for ET because of the Crohns and have been told I need a bone marrow biopsy.

dee2000 | @dee2000 | Jan 27, 2023

In reply to @biyashiekh "hey . i am abiha 18 years old diagnosed by ET with JAK2 mutation and have..." + (show)

Hi there I’m 25 and just been diagnosed with Crohns and ET I’m on meds for both it’s worring being so young.

bj87 | @bj87 | Jan 27, 2023

In reply to @wiggins32 "Hi Bj87. Yes, this info is helpful. My HCT is in normal ranges. It's HGB is..." + (show)

Just got home from the doctors. My hct is still 27 which is as high as it s ever been except when was 30 after 2units of red blood cells. Yay!!!
My wbc is 10.4, rbc is 2.99,
Hg is 8.8, platelets 23.8,
rdw15.5. I feel normal and strong and other than my kidneys being in stage 4 ,but stable , I feel great. I don’t seem to have any underlying problems as you. Yeah the fatigue is hard but that seems to be my only problem so I’m okay with that. Good luck with your journey

wiggins32 | @wiggins32 | Jan 26, 2023

Hi Bj87. Yes, this info is helpful. My HCT is in normal ranges. It's HGB is often low, RBC always low, RDW always high, and iron saturation % is typically quite low (4-6%), and Ferritin drops to 5 if not caught in time. I get iron infusions every 3 mos on average. I just found out that I have IgA deficiency and another immunoglobin is low, so referred to a immunologist. I had no idea about this issue, but now so many of my symptoms are making more sense. Guess I am feeling a bit hopeful now bc I may be a candidate for immunotherapy, which could contain my constant battle with infections, and other stuff. The fatigue is rough, which I'm sure for you too.

bj87 | @bj87 | Jan 26, 2023

In reply to @wiggins32 "Hi Bj87. I am so curious how low your RBC was to cause red cell transfusions,..." + (show)

My hematocrit is what we watch. When ever it gets to 21or 22 I’ll get a unit of red blood cells. That usually gets me to 24 or 25. For a couple weeks. 27 is as high as it usually gets. A couple of weeks ago I was at 20 and got 2 units and it went up to 30 which is where the hemotolgist has always said he would be happy if he could get me there. At 27 or more I can function just fine. Still not for long with out resting. At 23 I am very tired. I am not sure if I have 2 problems (ET and anemia) or if it is all ET. I’ll ask tomorrow.
I hope this has been helpful.

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