Thrombocythemia

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RE: hi All

by Sherri12321 on Fri Apr 14, 2017 03:23 PM

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Hello Everyone. I am now awaiting my bmb to confirm my ET diagnoses . However I am 99% positive it will be confirmed. My platelets are 1.1 million...My symptoms are severe fatigue, silent migraines(visual disturbances) shortness of breath, night sweats, minor itching. I also have Arrhythmia And high blood pressure. But no history of clots. So for now I am only on low dose aspirin...which all ET patients should be on, unless they are allergic.The reason many of you are referred to an oncologist is because ET IS a bone marrow cancer. However it is not life threatening and a normal life span can be expected, unless it progresses to mf or certain types of leukemia. There are several support groups on facebookf or ET patients and caregivers who post regularly and answer many questions regarding MPN's.. But as always discuss changes you make with your doctor's. And whenever possible seek the medical advice from an MPN specialist , if one is available in your area. You are not alone. Good luck on your journeys

RE: Essential Thrombocythemia

by GloriaSW on Tue Jan 30, 2018 04:23 AM

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I was diagnosed in 1991. 27 years ago. First count then was 650. I did a bone biopsy then was diagnosed essential Thrombocythemia. Nothing prescribed other than bloodwork every 6 months. In 2001 I hit the 1 million mark. Prescribed baby asprin. In 2003 I hit 1300.. Now an ecoteric full dose 325mg asprin. I have fluctuated a lot over the years but never below a million. Im 61 and going to my hemotologist tomorrow. If the asprin is working . I'm scared to take the Hyrdea. What are the side affects?

RE: Essential Thrombocythemia

by Sherri12321 on Wed Jan 31, 2018 01:40 AM

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As with All drugs, there are common side effects.  But I do not have any side effects from Hydroxyurea. At first I had a little gas and a slight metallic taste in my mouth, but that passed after the first couple weeks.  My platelets went from over a million down to normal in 3 months with 8 capsules per week. I am now on a lower dose.

RE: Essential Thrombocythemia

by Sherri12321 on Wed Jan 31, 2018 01:42 AM

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Also Gloria, the aspirin is only to prevent the platelets from being sticky and forming clots. It does not have any effect on our platelet counts. Best of luck.

RE: Essential Thrombocythemia

by GloriaSW on Thu Feb 01, 2018 01:38 AM

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Thank you. I know the asprin is only to help with the clotting. But I declined the hydroxyrea in 2003 because I read in a Cleveland Clinic article, that long term use can increase your odds of developing Leukemia. At 62 I know its about weighing the odds now. I'm happy I waited but that may not be the best decision for everyone. I also read it thins out your hair. Seems terrible to think back , it should have not beenn an issue.

RE: Essential Thrombocythemia

by GloriaSW on Thu Feb 01, 2018 01:40 AM

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What is the dose?

RE: Essential Thrombocythemia

by GloriaSW on Thu Feb 01, 2018 01:40 AM

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What is the dose?

RE: Essential Thrombocythemia

by Sherri12321 on Thu Feb 01, 2018 02:14 AM

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Gloria...after much research in recent years...They are seeing that the odds of progression from HU is much less than originally thought. There are many in the fb groups that have been on hu for 20~30 years and doing very well. Hu is still first line treatment for ET and the most well tolerated also. I would recommend a "good" multi vitamin and biotin to keep your hair strong...I was on 8 doses per week, now I am on 5 doses per week. 

RE: Essential Thrombocythemia

by GloriaSW on Thu Feb 01, 2018 11:50 PM

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Thank you very much.

RE: Essential Thrombocythemia

by Sherri12321 on Fri Feb 02, 2018 01:33 AM

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You are very welcome Gloria...Best of luck!! Stay positive!! Hu is a wonderful drug!!!

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