1. < Blood Cancers & Disorders

Essential thrombocythemia

Posted by Tessa @tessa, Nov 12, 2011

I am interested in connecting with others with this illness. I was diagnosed this summer with ET and have been to see two hematologists here in Michigan and then went out to Mayo clinic. I am a 27 year old female and wondering what kinds of experiences others like myself have had. I had doctors telling me I should go on hydroxyurea which is chemo therapy which I was very hesitant to do when I was having absolutely no symptoms. The elevated platelet count was simply found on a routine CBC. When I went out to Mayo I was told all I needed to do was take aspirin that there was no need for chemo therapeutic intervention at this time,especially because I am interested in having kids. I am interested in hearing other peoples experiences.

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esperanzam | @esperanzam | Jan 7, 2023

I totally agree. The meds have extended mine 7 1/2 years. I just had not ever been told about the flushing after using the bathroom for reasons of possible toxicity to others. have taken the Hydrea faithfulIy for all these years and am grateful this treatment is available. In the country I lived when I was diagnosed, (Venezuela) medicines are very hard to get.

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teech64 | @teech64 | Jan 8, 2023

I am 64 living in Qld, Australia and was diagonised with E.T. over 12 years back. Young 27 year old lady. May I ask what were your platelette levels please. Mine were very high when I was first diagonsed, over 900. Normal is between 150 - 450. I was told to take Hydria, which I did. 500 mg, taking 2 a day. I did this until my levels resided. This has taken over 12 years to finally today to be around 150 - 200 back to normal. I went below 100 at one point. My doctor suggested I needed a blood transfusion, due to low count, instead of a high one for all these years. Hydria is designed to lower your blood count. So I stopped takening Hydria for the first time in 12 years. I have now stopped takening these pills and my count has slowly rising again, so I will have take Hydria again when my levels rise over 450. From down under, please do not be concerned with this drug, Hydria. It has side effects. Very small and wishing for a baby, ask your doc. I am sure all will be cool and ok. Hang in there dear. I am confident now my life is changing for the best.

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1 reply
1995victoria | @1995victoria | Jan 9, 2023

Have you had a bone marrow aspiration and biopsy to confirm the ET diagnosis. It might be a good idea to get evaluation by hematologist, a second opinion

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1 reply
1995victoria | @1995victoria | Jan 9, 2023

Did you have a bone marrow biopsy/aspiration to confirm diagnosis? Good to get a second opinion

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teech64 | @teech64 | Jan 9, 2023
In reply to @1995victoria "Have you had a bone marrow aspiration and biopsy to confirm the ET diagnosis. It might..." + (show)
@1995victoria

Have you had a bone marrow aspiration and biopsy to confirm the ET diagnosis. It might be a good idea to get evaluation by hematologist, a second opinion

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Yes and yes.I have done all of this. I have been to many docs and specialist over this time. I had a bone marrow biopsy at the start, which did confirm ET. I have had evulation by hematogist already.

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esperanzam | @esperanzam | Jan 9, 2023
In reply to @teech64 "I am 64 living in Qld, Australia and was diagonised with E.T. over 12 years back...." + (show)
@teech64

I am 64 living in Qld, Australia and was diagonised with E.T. over 12 years back. Young 27 year old lady. May I ask what were your platelette levels please. Mine were very high when I was first diagonsed, over 900. Normal is between 150 - 450. I was told to take Hydria, which I did. 500 mg, taking 2 a day. I did this until my levels resided. This has taken over 12 years to finally today to be around 150 - 200 back to normal. I went below 100 at one point. My doctor suggested I needed a blood transfusion, due to low count, instead of a high one for all these years. Hydria is designed to lower your blood count. So I stopped takening Hydria for the first time in 12 years. I have now stopped takening these pills and my count has slowly rising again, so I will have take Hydria again when my levels rise over 450. From down under, please do not be concerned with this drug, Hydria. It has side effects. Very small and wishing for a baby, ask your doc. I am sure all will be cool and ok. Hang in there dear. I am confident now my life is changing for the best.

Jump to this post

My platelet levels were 1,250,000 when I was first diagnosed. Took about 6 months of Hydrea to get them down and it has been a roller coaster with the needed steroid treatments at times for other conditions because the steroids make them go up and the Hydrea has to be adjusted. I have the best count I have had in a while, 388,000. My oncologist feels if I can keep them under 500 I am good. But it requires daily Hydrea to do this. If I don't take it, they go up.

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biddypoppop | @biddypoppop | Jan 11, 2023
In reply to @thatshappy "Good Morning Tessa. I set up a google alert for Essential Thrombocythemia because of the rarity..." + (show)
@thatshappy

Good Morning Tessa. I set up a google alert for Essential Thrombocythemia because of the rarity of the disease. Only get maybe 1-2 "alerts" a month. An alert this morning led me to your post. Joined the "Mayo Group" here in order to answer you. Have never been to this "community" before. However, use the Mayo website frequently, as they seem to have the best experts and info on ET. "Lucky You" to have been diagnosed by them. I am 62, was diagnosed earlier this year, tested positive for the Jac2 mutation, am taking the Hydroxy to lower the platelets, and it is working! I am high risk, with other health issues, age etc., so the Hydroxy is most likely correct for me. Unfortunately, my Hematologist / Oncologist is a good chemist, but not very communicative. Most of what I have learned, has been online, and have saved several links that I would be happy to forward to you in an email (if I could figure out how to do that here). If you are not familiar with it, there is a doc (Ruben Mesa) the Mayo Clinic that has a utube presentation on ET. There is also something else interesting going on in regards to some Free (if you are already diagnosed with ET) DNA testing (be sure to consider the privacy issues) of which Dr. Mesa recently went on the board. Will send you the link if you are interested. Low iron is a challenge for me, and have infusions pretty regularly. The low iron that also causes major fatigue seems to be somewhat linked to the ET in my case. If you have some specific questions or want me to send you the links aforementioned, please email me.

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I would also appreciate more info. I have ET for over 8 years and have been on hi for all that time. I have now developed pancreatitis, experience fatigue. Need to connect more and learn more.

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wa34937 | @wa34937 | Jun 14, 2023

ET CALR, taking hydroxy for 3 years, 1000mg daily for last year. Platelets have risen from 5xx to high 700's, Hematologist is having me continue on 1000 but skip every other day. I haven't had a face to face with him to question, BUT, anyone heard of this therapy ? I get monthly blood draws.

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1 reply
eileen11108 | @eileen11108 | Jun 15, 2023
In reply to @wa34937 "ET CALR, taking hydroxy for 3 years, 1000mg daily for last year. Platelets have risen from..." + (show)
@wa34937

ET CALR, taking hydroxy for 3 years, 1000mg daily for last year. Platelets have risen from 5xx to high 700's, Hematologist is having me continue on 1000 but skip every other day. I haven't had a face to face with him to question, BUT, anyone heard of this therapy ? I get monthly blood draws.

Jump to this post

If you have been taking 1000 mg Hydroxyurea daily for 3 years and your platelets are in high 700s it seems to me that HU might not be working well for you. Could you discuss this your hematologist.

I am currently taking 500 mg on Monday/Wednesday/Friday to see if my platelets slowly go down from 528 and. I can avoid headaches. I get my next CBC on July 7.

Best wishes, Eileen

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