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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chimo | @chimo | Jul 12 9:41am
In reply to @janemc "HU = Hydroxyurea. I started taking it after my ET diagnosis in October 2023. Some posters..." + (show)
@janemc

HU = Hydroxyurea.

I started taking it after my ET diagnosis in October 2023.

Some posters here have been taking it for decades.

While HU is technically "chemo," and side effects ARE possible, happily for most of us this inexpensive, readily-available drug is tolerated well.

HU has been in wide use for quite a while . . . it's also used for sickle cell anemia.

For me, the green-and-pink capsules are a welcome alternative to cardiovascular complications.

Say, were you also advised to take low-dose aspirin?

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Thanks once again. I feel lucky that HU seems to be a very safe drug that gets quite good results. Yes, I have also been taking 81mg childrens asperin. I will be sure to ask my hematologist about not taking asperin.

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1 reply
janemc | @janemc | Jul 12 9:57am
In reply to @chimo "Thanks once again. I feel lucky that HU seems to be a very safe drug that..." + (show)
@chimo

Thanks once again. I feel lucky that HU seems to be a very safe drug that gets quite good results. Yes, I have also been taking 81mg childrens asperin. I will be sure to ask my hematologist about not taking asperin.

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Most of us, I'd say, take low-dose aspirin as well as HU.

For me that little pill brings great peace of mind.

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nohrt4me | @nohrt4me | Jul 13 7:24am

Re aspirin, ET blood over-produces platelets that are sticky. Aspirin is supposed to make them slipperier. So be aware that if you have heart trouble AND ET (like me), your hemo and cardio people need to be on the same page. My cardio had never heard of ET.

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gmacookie | @gmacookie | Jul 13 7:44am

I was diagnosed with ET in 2014. I have been on 500 mg Hydroxyurea every day since then. They added an additional 500 mg on Monday, Wednesday and Friday.
I have had no appreciable side effects. That being said everyone is different. I also take a baby asprin everyday. I go for labs and see the oncologist about every 4 months.

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1 reply
mamsgirl1998 | @mamsgirl1998 | Jul 13 11:52am

I am 51 and have been taking Hydrea and baby ASA daily for 5 months. I have ET and no side effects my platelets were over 1 million and now at 389,000. I was scared of Hydrea but it has helped.

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jroyer | @jroyer | Jul 13 3:22pm
In reply to @chimo "I just started taking 1 capsule of Hydroxyurea 500mg per day. I wonder how soon afterwards..." + (show)
@chimo

I just started taking 1 capsule of Hydroxyurea 500mg per day. I wonder how soon afterwards a person could experiences side effects? …. If a person has that problem. Hope I don’t have any; I’m just curious. Thank you!

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I started a little over a year ago w/500 mg/day 6 days/week. I have hot flashes again 😬 but they are few and far between (I’m 72 and thought I was done w/that—but guess not). I also have a strange itching sensation at my elbow / upper forearm. I use rubbing alcohol to reduce the itch and sometimes an itch cream….but the alcohol actually works best. Sometimes I’ll get a headache…and I’m not sure any of these are drug related — but easy to blame!

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1 reply
chimo | @chimo | Jul 13 6:54pm
In reply to @jroyer "I started a little over a year ago w/500 mg/day 6 days/week. I have hot flashes..." + (show)
@jroyer

I started a little over a year ago w/500 mg/day 6 days/week. I have hot flashes again 😬 but they are few and far between (I’m 72 and thought I was done w/that—but guess not). I also have a strange itching sensation at my elbow / upper forearm. I use rubbing alcohol to reduce the itch and sometimes an itch cream….but the alcohol actually works best. Sometimes I’ll get a headache…and I’m not sure any of these are drug related — but easy to blame!

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Thank you for sharing your experience with Hydroxyurea. The more we know, the better!

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biddypoppop | @biddypoppop | Jul 14 8:48am
In reply to @gmacookie "I was diagnosed with ET in 2014. I have been on 500 mg Hydroxyurea every day..." + (show)
@gmacookie

I was diagnosed with ET in 2014. I have been on 500 mg Hydroxyurea every day since then. They added an additional 500 mg on Monday, Wednesday and Friday.
I have had no appreciable side effects. That being said everyone is different. I also take a baby asprin everyday. I go for labs and see the oncologist about every 4 months.

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I am very similar to you

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1 reply
chimo | @chimo | Jul 14 1:25pm
In reply to @biddypoppop "I am very similar to you" + (show)
@biddypoppop

I am very similar to you

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Good for you! Double blessed! The pill is working and no side effects! Ride on!

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chimo | @chimo | Jul 14 1:30pm
In reply to @mamsgirl1998 "I am 51 and have been taking Hydrea and baby ASA daily for 5 months. I..." + (show)
@mamsgirl1998

I am 51 and have been taking Hydrea and baby ASA daily for 5 months. I have ET and no side effects my platelets were over 1 million and now at 389,000. I was scared of Hydrea but it has helped.

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I’m a bit stressed. So far so good. I’m anxious for the lab results to see if they will come down. I must be patient for a few more weeks.
It’s been encouraging to hear how everyone has done. Helps my comfort level. Thanks

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