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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1995victoria | @1995victoria | Mar 22 11:33am
In reply to @pjrockz88 "Hello. My mother just celebrated her 81st birthday and is struggling with ET and side-effects from..." + (show)
@pjrockz88

Hello. My mother just celebrated her 81st birthday and is struggling with ET and side-effects from Hydrea. She is able to be active before her daily dose, but afterward suffers from blood pressure spikes, extreme weakness and fatigue, tremors and more. She goes to the ER every month (it used to be weekly) because she is frightened she's slipping away. Can anyone share how they have managed side effects? Any resources she could use? I’m asking for her because she lives 1000 miles from me and is not able to search for herself.

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Is she also taking a baby aspirin, helps keep platelets slippery (not sticky)? Having a visiting nurse or a volunteer visitor from senior center or church might help her feel connected.

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Pumpkin1 | @pumpkin1 | Mar 22 11:50am
In reply to @pjrockz88 "500 mg daily. Her doctors have tried taking her off of it one day a week...." + (show)
@pjrockz88

500 mg daily. Her doctors have tried taking her off of it one day a week. And previously they even tried alternate day dosing. But every time, her platelets spike and she ends up in the ER. Thanks so much for the suggestions so far, keep them coming. My mom also experiences an extremely painful burning sensation in her legs and her thighs and ankles swell severely.

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So sorry your mom is experiencing such negative side effects from hydrea. Question: What is your mom’s platelet count? I ask because I was diagnosed with E.T. in 2021 with platelet count in mid 500s. I chose not to take Hydrea and get blood tests every 3 months. I also take a baby aspirin every evening. My platelets have stayed in the mid 500s and I feel fine. I am 82. I mention this since the doctor said the alternative for your mom is to do nothing. It sounds as though your mom is emotionally and physically wrought with the side effects of Hydrea. Depending on her platelet count, perhaps doing nothing may be an alternate plan. I do not want to sway you/her in any way. Just want you to know this is an option you may want to discuss with her doctor. Wishing your mom the very best outcome.

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1 reply
mib | @mib | Mar 23 9:46am
In reply to @pjrockz88 "Hello. My mother just celebrated her 81st birthday and is struggling with ET and side-effects from..." + (show)
@pjrockz88

Hello. My mother just celebrated her 81st birthday and is struggling with ET and side-effects from Hydrea. She is able to be active before her daily dose, but afterward suffers from blood pressure spikes, extreme weakness and fatigue, tremors and more. She goes to the ER every month (it used to be weekly) because she is frightened she's slipping away. Can anyone share how they have managed side effects? Any resources she could use? I’m asking for her because she lives 1000 miles from me and is not able to search for herself.

Jump to this post

I am 81. I take Hydrea three times a week. My platelets are normal now. I remember when I was first diagnosed about three years ago and read about Hydrea how terrified I was. My biggest reaction was some hair loss initially, but that has stopped my suggestion. My suggestion is find out if she can take the Hygia before she goes to bed. I take mine in the morning but I have read many articles which says take and get a bedtime is better and then she’ll bypass the sleepiness. I wish her well.

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1 reply
mib | @mib | Mar 23 9:48am
In reply to @mib "I am 81. I take Hydrea three times a week. My platelets are normal now. I..." + (show)
@mib

I am 81. I take Hydrea three times a week. My platelets are normal now. I remember when I was first diagnosed about three years ago and read about Hydrea how terrified I was. My biggest reaction was some hair loss initially, but that has stopped my suggestion. My suggestion is find out if she can take the Hygia before she goes to bed. I take mine in the morning but I have read many articles which says take and get a bedtime is better and then she’ll bypass the sleepiness. I wish her well.

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Correction, take the hydra at bedtime that might help with the symptoms but check with the doctor first

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preacherswife1977 | @preacherswife1977 | May 9 4:59pm

I went back to hematologist Tuesday. Platelets were 767. Said keep taking my Eliquis and he would see me in 3 months.

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nyjean | @nyjean | May 11 3:30pm
In reply to @pumpkin1 "So sorry your mom is experiencing such negative side effects from hydrea. Question: What is your..." + (show)
@pumpkin1

So sorry your mom is experiencing such negative side effects from hydrea. Question: What is your mom’s platelet count? I ask because I was diagnosed with E.T. in 2021 with platelet count in mid 500s. I chose not to take Hydrea and get blood tests every 3 months. I also take a baby aspirin every evening. My platelets have stayed in the mid 500s and I feel fine. I am 82. I mention this since the doctor said the alternative for your mom is to do nothing. It sounds as though your mom is emotionally and physically wrought with the side effects of Hydrea. Depending on her platelet count, perhaps doing nothing may be an alternate plan. I do not want to sway you/her in any way. Just want you to know this is an option you may want to discuss with her doctor. Wishing your mom the very best outcome.

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Hi pj -how long have your platelets stayed at that level? Do you have the JAK2 mutation? My platelets rose slowly to that leveler several years & I was diagnosed with ET with JAK2 & started HU. Fortunately no side effects & platelets have dropped to 300s.

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1 reply
1995victoria | @1995victoria | May 12 9:54am

Good that you're seeking MPN specialist. I'm old so more at risk for stroke or heart attack. At your age you should seek the best medical advice you can get.

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preacherswife1977 | @preacherswife1977 | May 13 10:07pm
In reply to @nyjean "Hi pj -how long have your platelets stayed at that level? Do you have the JAK2..." + (show)
@nyjean

Hi pj -how long have your platelets stayed at that level? Do you have the JAK2 mutation? My platelets rose slowly to that leveler several years & I was diagnosed with ET with JAK2 & started HU. Fortunately no side effects & platelets have dropped to 300s.

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I do have JAK2. Platelets have been in the 700's since I had to come off the HU. I hope you continue doin well with the HU

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kjg47 | @kjg47 | May 16 3:26pm

Hi Tessa

My mum was diagnosed with ET when she went to routinely donate blood. She was probably in her early 30s when she received her diagnosis and went on to have a third child naturally in her early 40s. She does not carry the Jak2 gene. She is now 75 and only recently started to experience poor health as hers has progressed to myelofibrosis in the last 13 months. I'm afraid I don't know all the ins and outs but I'm learning right now. Even though my mum isn't great at the moment and it's likely too late for a bone marrow transplant to be effective she has been able to live a full life. I just wanted to share this to hopefully inspire and learnmore about ET from what everyone knows this group is experiencing.

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1 reply
1995victoria | @1995victoria | May 17 9:01am

I would suggest the LLS.org website (Leukemia Lymphoma Society) which has wonderful information they will mail you about the many different types of blood cancers.......all the best....

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