1. < Blood Cancers & Disorders

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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docoltun | @docoltun | Oct 22 12:31pm

My platelet count was over 1800 20 years ago...I chose Angrlyn (anagrelide) over hydroxyurea, never had a problem or side effects. While I see an oncologist for treatment, it ET has never been a limiting factor.

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suedeani | @suedeani | Oct 21 2:35pm
In reply to @preacherswife1977 "I could not take the Hydroxyurea either. I am now getting injections of Besrimi every other..." + (show)
@preacherswife1977

I could not take the Hydroxyurea either. I am now getting injections of Besrimi every other week. So far no side effects to it. I have had 5 injections so far. All we have is the Lord to help us through these uncharted waters.

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and science of course!

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et1055 | @et1055 | Oct 21 11:00am

I know the feeling. However, I am 72 and at high risk for heart attack, blood clots etc. Mycologist tells me to take it easy, meaning not to worry about it because it is the least dangerous cancer that they deal with. Just take the medication and let it do its work to lower the platelets. It is a chronic condition. I have been on HU for three months now and the platelet numbers are coming down (1129 to 893). I’m finally getting my head around the diagnosis. this group chat does help— because I do not know anyone in person with this condition.
all the best to you .
Hugs

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1 reply
williamsjen | @williamsjen | Oct 20 8:12pm
In reply to @hariom1961 "My case even very similar. At 61 and asymptomatic, six months back platelets were 1150. With..." + (show)
@hariom1961

My case even very similar. At 61 and asymptomatic, six months back platelets were 1150. With Hydroxyurea 500 mg and aspirin 75 mg every day they came down to 480. Walking , swimming, cycling had been my regular routine for years. Don’t know what must be the cause but after taking two doses of Covid vaccination COVISHIELD and was covid positive twice, these high platelets were accidentally found in my yearly routine blood test. Dr feels covid infection can be the reason . Would appreciate views from others too with similar experiences and guidance .

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Thanks for sharing makes me feel better to k ow someone else has the same problem and still living. Been so stressed loss my husband 4 yes ago and my mom 9 months ago juste and my daughters and would hate for something bad to happen. I'm in missouri what state are you in?

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williamsjen | @williamsjen | Oct 20 11:55am
In reply to @hariom1961 "My case even very similar. At 61 and asymptomatic, six months back platelets were 1150. With..." + (show)
@hariom1961

My case even very similar. At 61 and asymptomatic, six months back platelets were 1150. With Hydroxyurea 500 mg and aspirin 75 mg every day they came down to 480. Walking , swimming, cycling had been my regular routine for years. Don’t know what must be the cause but after taking two doses of Covid vaccination COVISHIELD and was covid positive twice, these high platelets were accidentally found in my yearly routine blood test. Dr feels covid infection can be the reason . Would appreciate views from others too with similar experiences and guidance .

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Realized 2 years later after taking covid vaccination my platelets were high and now taking blood work to determine the causes
They were never high until after took vaccination taking asprin now sent to cancer center to take blood work she said the results didn't show anything but showed my iron level high. Now I am scheduled to take more blood work platelets in the high nor 900,000. Scared every day for my life. Healthy person and all blood work prior to vaccination were normal 64 years old woman. Feel fine just not as much energy but think thats about being worried.

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preacherswife1977 | @preacherswife1977 | Oct 19 9:17am
In reply to @pattycz "I hear you loud and clear on August 15. I was diagnosed with ET also with..." + (show)
@pattycz

I hear you loud and clear on August 15. I was diagnosed with ET also with no symptoms. Yesterday I had the bone marrow test and waiting for results. My thoughts are very similar to yours. I did the hydroxyurea for a little while, but it did not agree with me at all. I’m not sure what the next steps are hang in there My, Lord, and my God is keeping me calm I have a tendency to have anxiety. Many blessings to you on your journey.

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I could not take the Hydroxyurea either. I am now getting injections of Besrimi every other week. So far no side effects to it. I have had 5 injections so far. All we have is the Lord to help us through these uncharted waters.

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1 reply
pattycz | @pattycz | Oct 19 8:53am

I hear you loud and clear on August 15. I was diagnosed with ET also with no symptoms. Yesterday I had the bone marrow test and waiting for results. My thoughts are very similar to yours. I did the hydroxyurea for a little while, but it did not agree with me at all. I’m not sure what the next steps are hang in there My, Lord, and my God is keeping me calm I have a tendency to have anxiety. Many blessings to you on your journey.

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1 reply
sdduan | @sdduan | Oct 18 11:17pm
In reply to @blondie65 "I also started on 1,000 mg per day in February of this year. I have really..." + (show)
@blondie65

I also started on 1,000 mg per day in February of this year. I have really bad aches and pains. My legs are the worst. It is also worse at night. I haven’t said anything to my Oncologist but I will at my next appointment.

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I also had side effects of fatigue, itchy skin and much longer recovery time after a work out. Any one tried Pegasys interferon? I heard some benefits with that treatment.

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1 reply
jola13 | @jola13 | Oct 18 10:30am
In reply to @blondie65 "I also started on 1,000 mg per day in February of this year. I have really..." + (show)
@blondie65

I also started on 1,000 mg per day in February of this year. I have really bad aches and pains. My legs are the worst. It is also worse at night. I haven’t said anything to my Oncologist but I will at my next appointment.

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I was diagnosed back in May 2023 and am on 500 M-T and 1000 F-S-S, my platelets have come down but I am also suffering a great deal from fatigue and shooting pains, bad aches in joints especially at rest and at night. It's all very tiresome.

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blondie65 | @blondie65 | Oct 13 12:53pm
In reply to @chocolategirl "I was diagnosed with ET back in January and started on HU in February. My doctor..." + (show)
@chocolategirl

I was diagnosed with ET back in January and started on HU in February. My doctor has me on 1000 mg everyday and my platelets are quite low now. I've had no side effects from the med that I can tell.

I do, however, have throbbing joints and shooting pains quite often, I notice them most when at rest. Has anyone else experienced this? If so - any solutions other than OTC pain relievers?

Thanks.

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I also started on 1,000 mg per day in February of this year. I have really bad aches and pains. My legs are the worst. It is also worse at night. I haven’t said anything to my Oncologist but I will at my next appointment.

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