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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chocolategirl | @chocolategirl | Oct 12 12:48pm

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.

eileen11108 | @eileen11108 | Oct 13 7:13am

In reply to @chocolategirl "I was diagnosed with ET back in January and started on HU in February. My doctor..." + (show)

I have been on low dose HU since 2022 for ET JAK2. I am currently taking 500 mg four days a week. I have lately been noticing leg aches but not shooting pains, I feel the best when I take 500 mg three days a week. The extra pill was requested by my hematologist to get my platelets to 400 (were about 520).
Best wishes, Eileen

winmil99 | @winmil99 | Oct 13 7:39am

In reply to @eileen11108 "I have been on low dose HU since 2022 for ET JAK2. I am currently taking..." + (show)

my plts run between450-650 my hematologist said not to use HU until they hit 1000 just on asa I was diagnosed 1.5 yr ago

bshattuck138 | @bshattuck138 | Oct 13 9:36am

Becky has been on 500mg of Hydroxy for about 3 weeks now with no side affects. As we try to figure out the correct dose, her platelets are currently at 629 with another blood test this Thursday to see if they are still rising.

mdterp76 | @mdterp76 | Oct 13 10:10am

In reply to @chocolategirl "I was diagnosed with ET back in January and started on HU in February. My doctor..." + (show)

I started gradually with HU, 500 mg, 1x week for a month, then increased over 6 months to 4x week. The adjustment has gone well. I also need daily iron for low iron but not anemic and daily baby aspirin. Could a lower dose of HU benefit you w/o side effects. Claritin is supposed to help with pain. Also, are you hydrating have your body weight? I find hydration is so important to my health and ET journey. Consult with your doctor first about Claritin and other changes to your plan. Also, are you seeing a hematologist/oncologist vs just your internist? They know more about MPN's over regular doctors. Wishing you brighter days in the future!
Karla

eileen11108 | @eileen11108 | Oct 13 10:58am

It seems that hematologists have different opinions on platelet count and doses of HU. I have held my ground about not taking two a day. I personally feel best taking one 500 mg M/W/F. My next CBC/appointment is November 12.

When I told my GP that she would like to get me to below 400, he simply said that is ambitious!

Best wishes, Eileen

eileen11108 | @eileen11108 | Oct 13 11:01am

In reply to @winmil99 "my plts run between450-650 my hematologist said not to use HU until they hit 1000 just..." + (show)

Winmil99,
Please see my reply below.
Eileen

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)

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.

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)

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.

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)

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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