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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agfromtheuk | @agfromtheuk | Oct 12, 2023

In reply to @preacherswife1977 "I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist..." + (show)

Restless Leg Syndrome...Ok, I am going to put this crazy solution out there, this is an old wife's tale! don't ask me why, but sleeping with a bar of soap near your legs does actually work! Don't knock it until you have tried it!!

bj87 | @bj87 | Oct 12, 2023

In reply to @mdterp76 "Get on the email list for the MPN Foundation and watch their excellent programs and videos...." + (show)

I agree. Been doing it over 30 years.

1995victoria | @1995victoria | Oct 12, 2023

I've been low energy most of my life. I don't know if ET or HU really changed it, or pandemic isolation?????? or just aging also.....seems like combination of many factors, I'm not sure I can point to just one and say that's it.

nohrt4me (Jean) | @nohrt4me | Oct 12, 2023

In reply to @mdterp76 "Get on the email list for the MPN Foundation and watch their excellent programs and videos...." + (show)

Do you think the fatigue comes from the HU or the ET or aging or co-morbidities? It's often really hard to figure out once you hit 60 or 70. I was exhausted all the time before HU and had to take early retirement. HU seemed to perk me up a bit.

nohrt4me (Jean) | @nohrt4me | Oct 12, 2023

In reply to @docoltun "Wish I could understand why more doctors don't recommend Anagrelide for ET....when a new physician switched..." + (show)

My cardiologist nixed anagrelide because it causes fluid retention and abnormal rhythms in some people. My heart is already messed up, so not a good choice for me. But lots of people do very well on it.

kevinsgirl18 | @kevinsgirl18 | Oct 11, 2023

I was just diagnosed with ET. I am researching, reading, learning, processing what exactly this means for my life and my loved ones.

mdterp76 | @mdterp76 | Oct 11, 2023

Get on the email list for the MPN Foundation and watch their excellent programs and videos. https://www.mpnresearchfoundation.org/

I was just diagnosed in Feb 2023, take iron and baby aspirin daily, HU 2x week at 500 mg each, and just try to live my life. Yes, I do get fatigue from the HU, plus dry skin, and dry eyes, but I need to take the HU to remain stable and prevent thrombotic events. I'm a high-risk with ET, Jak2, and over 60. Have never had a symptom; just high platelets on a regular CBC at my physical in Jan. 2023. Keep active and busy. We can manage this for a long time with this illness. Take care!

docoltun | @docoltun | Oct 11, 2023

In reply to @preacherswife1977 "I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist..." + (show)

Wish I could understand why more doctors don't recommend Anagrelide for ET....when a new physician switched me to Hydrea it caused SO MANY side effects and never did stablize the platelet count. Grateful when I was able to find a physican who said if it worked (for 10 years) why switch?

I'm 72, diagnosed over twenty years ago.

vivoconte | @vivoconte | Oct 10, 2023

In reply to @colleenyoung "Hola, @vivoconte I moved your post to this discussion group: - Essential Thrombocythemia: Looking for information..." + (show)

Respecto a la fatiga, intento descansar cuando puedo y realizar algo de actividad física (me cuesta pero al finalizar me siento con más energía).

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eileen11108 | @eileen11108 | Oct 10, 2023

In reply to @marnie12 "Chelated Magnesium Complex (capsules) works for my restless leg problem and it even helps me relax..." + (show)

I take Magnesium Citrate and Co Q10 to help prevent my going into AFib. So maybe it is helping with the Hydroxyurea problems. I am also only taking HU on M/W/F.

I will look for the complex. Avoid magnesium oxide as it can cause loose bowels.

Eileen

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