Essential Thrombocytosis - Life Expectancy

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Essential Thrombocytosis - Life Expectancy

by emptyk on Thu Sep 02, 2010 04:31 PM

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My wife has this disease. She has had it for about 6 years and was diagnosed with it and and began treatments of Hydrea about 3 1/2 years ago. She is 56 and has high blood pressure. Along with Hyrea pills three times a week she takes low dosage aspiren and she is on a high blood pressure medication.

I haven't read about any fatalities from this disease on this site (or perhaps I missed it). Does anyone know of anyone whe has actually died directly from the disease or just fromm heart attacks or blood clots?

RE: Essential Thrombocytosis - Life Expectancy

by mrslynn63 on Thu Nov 04, 2010 12:38 PM

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My husband has had it for over 30 years. He just recently was diagnosed with myleofibrosis, which apparently is common for some with ET. He took hydrea for several years but was moved to Agrelide for the past 10+ years. He has never had any clots and his heart checks out well every year. 

Hope this helps.

RE: Essential Thrombocytosis - Life Expectancy

by mistyjade on Sat Apr 21, 2012 01:06 AM

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Hi. I just discovered this site while googling the life expectancy of people with Ess. Thrombocytosis. I was diagnosed with it at age 48 when a blood count showed 1.3 million platelets. I've been on hydroxyurea oral chemo now for 11 years now, 1500 mg daily (3 capsules). Just yesterday I asked my hematologist what the life expectancy is for people with E.T., and he said, "9-15 years."  What has always been my doctor's worry is my having a stroke (when platelets are 800,000 or above); the bone marrow learning to over-ride the chemo capsules; or the disease turning into acute leukemia, the way it did for one of his male patients. I've had blood clots (deep vein thrombosis) twice in the last 5 years, but I was also on estrogen pills at the time which may have been the culprit. No problems the last 3 years since I've been off the estrogen.

RE: Essential Thrombocytosis - Life Expectancy

by alicejones on Tue Feb 05, 2013 04:45 AM

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Hi - I have had ET for about 3 1/2 years taking Hydrea everye day along with a couple of other meds...Does anyone knowing of the combination of Hydroxyurea and other meds causing nightmares...been having them every night for 3 yrs on meds.  Other than fatigue, I think my doctor said a good life expectpecy would be about an average life--I am 69 and OK for hte most part.  I believe most people get by pretty well.

RE: Essential Thrombocytosis - Life Expectancy

by mistyjade on Tue Feb 05, 2013 05:52 AM

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Hi. I've been on hydroxyurea for E.T. for 12 years now and no nightmares, even taking it with low-dose estrogen for a few years (until I had blood clots), and now with a low-dose anti-depressant. I take 1500 mg a day (3 capsules). May I ask what the other meds are that you are taking and how much urea? Have you talked to your pharmacist about the possibility that your combined meds + chemo are causing the nightmares? (To me, a pharmacist has a better handle on the 'mix' of drugs than a physician.) My hematologist said life expectancy with E.T. is 9-15 years. I'm 60 and at the half-way mark of 12 years. My fatigue with the urea is really beginning to wreak havoc with my daily life, though, and I'm sorry I can't be an organ donor when I die and go to heaven.

RE: Essential Thrombocytosis - Life Expectancy

by alicejones on Tue Feb 05, 2013 03:02 PM

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Hi Thanks for replying so quick.  The other meds I am taking have been seen by the pharmacy and the Drs, and they discount a mix of drugs and say "anxiety" - however, I didn't have any nightmares before I started hydrox, and they go on and on.  I am 59 also, and do have fatigue now and I have to agree it does wreak havoc on your life and chang your daily activities.  Thanks so much for your insight and good luck to you.  My drug regime is 500/1000 alternating each day....It sounds like you have a good life span yet to enjoy your daily life.  Good luck to you.  A

RE: Essential Thrombocytosis - Life Expectancy

by pharmamdz on Thu Mar 21, 2013 11:52 PM

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On Feb 05, 2013 4:45 AM alicejones wrote:

Hi - I have had ET for about 3 1/2 years taking Hydrea everye day along with a couple of other meds...Does anyone knowing of the combination of Hydroxyurea and other meds causing nightmares...been having them every night for 3 yrs on meds.  Other than fatigue, I think my doctor said a good life expectpecy would be about an average life--I am 69 and OK for hte most part.  I believe most people get by pretty well.

hi; i've been on hydrea ( daily ) for 12 years now; i have suffered a stroke and myocardial infarct 5 years ago; i am now 50;  my doctor in Ottawa,Ontario tells me that i should have a normal life expectancy; best of luck

RE: Essential Thrombocytosis - Life Expectancy

by pharmamdz on Thu Mar 21, 2013 11:56 PM

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On Sep 02, 2010 4:31 PM emptyk wrote:

My wife has this disease. She has had it for about 6 years and was diagnosed with it and and began treatments of Hydrea about 3 1/2 years ago. She is 56 and has high blood pressure. Along with Hyrea pills three times a week she takes low dosage aspiren and she is on a high blood pressure medication.

I haven't read about any fatalities from this disease on this site (or perhaps I missed it). Does anyone know of anyone whe has actually died directly from the disease or just fromm heart attacks or blood clots?

hi; i am curious as to what life expectancy was mentioned to you;  i was diagnosed 12 years ago and have suffered serious complications( stroke and m.i.);  i just read that 9-15 years was told to a patient here on this site; thanks

RE: Essential Thrombocytosis - Life Expectancy

by mrslynn63 on Fri Mar 22, 2013 12:59 AM

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My husband died August 2011, 9 months after being diagnosed with mylofibrosis. .he was on Hydrea for 12 years.

RE: Essential Thrombocytosis - Life Expectancy

by pharmamdz on Fri Mar 22, 2013 01:02 AM

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On Mar 22, 2013 12:59 AM mrslynn63 wrote:

My husband died August 2011, 9 months after being diagnosed with mylofibrosis. .he was on Hydrea for 12 years.

i am sorry to hear that; thanks for your reply; if i could ask you a question;  how was he towards the end i.e. mentally and physically?

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