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Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27 7:26pm

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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docoltun | @docoltun | Feb 9 11:41am
In reply to @jewelfaux "I am 75 years old, have ET and am currently taking 1500mg of hydroxyurea daily with..." + (show)
@jewelfaux

I am 75 years old, have ET and am currently taking 1500mg of hydroxyurea daily with an 81mg aspirin. I was diagnosed just over a year ago. My platelets have only dropped by a hundred and are in the 600's. It was suggested possibly adding anagrelide. Any suggestions, comments, or personal experiences that you can offer?

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When first diagnosed 20+ years ago, m y platelets were around 1800....no symptoms, caught in a thorough blood workup. My GP sent me to a oncology hemotologist, who put me on Agrylin (anagrelide before it was generic). I never had any problem with it, as long as I take the dosage regularly (.5 mg morning and night currently). When that doctor retired ten years in, the next, new doc the Regal/Lakeside group referred terrorized me for about 2 months insisting I should have taken hydroxyurea....Finally got different authorization with Dr who said, if it works, bhy change? That's my experience!! Platelets hover below 400, see the doc every 6 months now (I'm 73), was seeing him annually in my my 60s.

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1 reply
thicksotropic | @thicksotropic | Feb 10 10:32am
In reply to @docoltun "When first diagnosed 20+ years ago, m y platelets were around 1800....no symptoms, caught in a..." + (show)
@docoltun

When first diagnosed 20+ years ago, m y platelets were around 1800....no symptoms, caught in a thorough blood workup. My GP sent me to a oncology hemotologist, who put me on Agrylin (anagrelide before it was generic). I never had any problem with it, as long as I take the dosage regularly (.5 mg morning and night currently). When that doctor retired ten years in, the next, new doc the Regal/Lakeside group referred terrorized me for about 2 months insisting I should have taken hydroxyurea....Finally got different authorization with Dr who said, if it works, bhy change? That's my experience!! Platelets hover below 400, see the doc every 6 months now (I'm 73), was seeing him annually in my my 60s.

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When on agrylin did you have to protect yourself from the sun as you have to with hydrea
Best regards

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1 reply
tampakaren | @tampakaren | Feb 11 3:59pm
In reply to @mamsgirl1998 "I went to see the Hematologist today and am going to start Hydroxyurea 500mg daily. I..." + (show)
@mamsgirl1998

I went to see the Hematologist today and am going to start Hydroxyurea 500mg daily. I will follow up in 2 weeks with repeat labs and a visit. I hope this works for me.

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I took Hydrea for 6 years successfully and had no side effects. I was 73 when I went on it. I’m now 80 and have progressed to AML but I believe hydrea gave me six good years.

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sunporch | @sunporch | Feb 12 8:21am

I am currently taking Jakafi. It's not a chemo drug and it doesn't have the side effects that Hu and Pegasys had on me. It's expensive but thank goodness for Tricare.

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wa34937 | @wa34937 | Feb 12 11:00am

76, ET CALR 3yrs on HU, platelets have been over a million a couple times, levels have been erratic. When taking 1500 daily I had malaise, 1500/1000 odd/even keeps me 700+ -, fatigue, hair loss, sensitivity to sun, rbc wbc just under minimum, life is good.

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docoltun | @docoltun | Feb 12 5:12pm
In reply to @thicksotropic "When on agrylin did you have to protect yourself from the sun as you have to..." + (show)
@thicksotropic

When on agrylin did you have to protect yourself from the sun as you have to with hydrea
Best regards

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Don't remember and I'm a scuba diver....so probably no.

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1 reply
klunardi06 | @klunardi06 | Feb 13 10:14am
In reply to @docoltun "Don't remember and I'm a scuba diver....so probably no." + (show)
@docoltun

Don't remember and I'm a scuba diver....so probably no.

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Yes. I' ve had several cancers removed since going on hydrea.

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IKEALover | @healedbytheblood0119 | Feb 14 7:28pm
In reply to @memere09 "I agree with you about the doctors. I have been on hydrea for 12 years, my..." + (show)
@memere09

I agree with you about the doctors. I have been on hydrea for 12 years, my only risk factor is I am over 60. I do not take hydrea the way my doctor would like because I get anemia. Consequently, my counts are always 700+. He gets so mad but refuses to hear what that my quality of life is more important to me than being exhausted.
I recently found this forum and it lifts my spirits to read how others are dealing with ET

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Do what’s best for you. Often we know better than these doctors who treat us all the same.

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remo1110 | @remo1110 | Feb 14 11:53pm

I have been taking it for three years, my platelet count dropped very quickly. Other than making you a little tired no real side effects.
I'm sure your platelet count will drop in a month.

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1 reply
vivoconte | @vivoconte | Feb 15 6:00am

Hola, yo tengo 41 años y hace 9 que tomo hidroxiurea. Cansancio y un poco de caída de pelo son los efectos que he experimentado.
Saludos!

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