Thrombocythemia

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Rocky2005

hi lori331, I was also diagnosed of essential thrombocythemia where in my platelet counts prior to my bone marrow aspiration last august 18 hits 950t ... i started taking hydroxyurea (hydra) that day and every week i have my cbc test and platelet count test... my first week after taking it my pltlt count down to 918t, i continue to take charge on my proper foods like of course vegetables and somebody told me about the concentrated mineral drops its actually a supplement and i asked my hematologist about taking supplements and i was allowed only teas, herbals and not on capsule form... he needs to know my supplements for his reference of course. after a week of dropping 40 drops daily on all my intake foods, my platelets down to 900t.. doing great till after another week it down to 600t, im still using hydra... after another week still footed on 600t but my wbc is now on its normal values... and now after two weeks my platelets count 201t... but my doctor still adv. me to take my hydra... and now my thumbnails are gray in color... that's the effect of hydra on me... hopefully next week... i want my hematologist stops me from taking the hydra... because in one of my research any chemo is a toxin therapy... till next week, and you should research on the terms that your doctor tells you and ask the posibility of taking natural way of treating it.. stress free will make your husband and i healed... agree?

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Lori331

Hi, Rocky M. Yes, I agree that natural supplements are way better than any kind of chemo. So, taking the Hydrea, you haven't been nauseated or vomiting or experiencing hair loss or losing weight? Also, did you know that Hydrea has been shown in some cases to make this disease progress to leukemia? My husbands doc has never done a bone marrow biopsy. Everything I read says to do one. My husband has been diagnosed for a year and a half with the only tests being blood tests every 3 months. I wonder why? I don't think our doc knows what he is doing. Do you know if your doc did a liver or kidney function test on you prior to putting you on Hydrea? Or did a mass red blood cell study? Please let me know. Thanks! Lori331

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Rocky2005

hi lori, At first i am afraid of the effects of it, specially when i research,but hydroxyurea capsule will take effect slowly unlike chemo on veins like on the cancer patients... Im through with my system utrasounds such as kidneys,bladder, ovaries, gallbladder, spleen, liver... etc I even have my colonoscopy on my colon... prior to my hydra med... By the way, from what country are you? Im in the Philippines. I suggest you see another doctor or find a second or even third opinion...

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Lori331

We are in the process of finding another doctor. We see a new doctor in Lubbock on Monday so wish us luck. I am hoping that we will get all the necessary tests done then. I am also hoping that we can just stay on aspirin which is what my husband is taking right now to try to take his platelet count down. I'll let you know what happens. We are from the United States - Texas. Wow, you are a long way away being in the Phillipines. Do you find that you get good care there? Are you happy with your doctor? American doctors do not like their patients to ask questions - they think we are "playing doctor".

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Rocky2005

Hi Lori, Try to research and find out about trace minerals drops from Great Salt lake of Utah, it's not far from you, Here in the Philippines, there's someone who introduce CMD that might help me cure this kind of disease... it's from Utah. Yes, i highly recommend my hematologist to anybody... You can ask your querries about your supplements, the side effects of the med that he recommend... It is sad to know that you are paying your doctor and you are deprive of the things you should know about the disorder that me and your husband have... Till i hear from you soon... Here's my email address --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- ... rocky

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Hermosagal

I have et and hydrea is doing well for me.. blood counts and 3 top hems told me better than having a stroke..etc.. see a specialist. and keep faith and platelets down.. for now.. I am scared but have a small child .. 46 and have alot to live for.. 500 mg daily .. aspirin.. and nexium .. and chinese herbs acupuncture.. massage etc..

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Bonnie_b_9

Hi Lori, I am a 45 year old mother of 2 and I was diagnosed with ET when my platlet count reach 1.61million. I was on hydrea for 2 weeks, then anagrelide for 3 weeks, and now back on the hydrea. The hydrea has not been too bad. Just some anemia and fatigue, but it is still early. On the other hand, the anagrelide affected my heart and darn near every other part of me. Never thought I'd be happy to be back on Chemo. I had 2 bonemarrow biopsies and a lot of other tests before being put on the hydrea. Times are tough, but together we can survive!

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Lori331

My husband started on the HU almost 3 weeks ago after he had a TIA. He is having weekly CBC's and liver function tests. On the fifth day of taking the HU, he experienced nausea and severe stomach cramping. Since then he has only complained of fatigue. The HU has been affecting his liver functions but not too terribly bad. He is drinking lots and lots of water to keep his system flushed out. This week's tests revealed that the HU has pushed down his RBC, hgb, and hct so that he is anemic. His platelet count prior to the HU was 1.2 million. Two weeks later it is 908,000. The dr. is not very happy that the plt. count is not dropping quickly, but the other counts are being affected. My husband has also had 3 moles that have suddenly changed shape, color, and size. Hydrea can cause skin cancer but it is usually after long term use according to the label. I have talked to some others who are taking the HU and they have had moles change relatively quickly as well. My husband is going to get them biopsied on Dec. 30. So will keep everyone posted as to the nature of the moles. Talk to you soon. Lori 331

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Suzieluwho

i have been diagnosed in nov with ET and i am not on hydrea yet the dr said that i am just below the percentage to go on it now .... i was wondering if anyone has been at my stage and how long did it take to go on the meds ...he indicated that i was only a few tenths of a percent from treatment levels ,..

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Daviehug

Hi Susan T, I am 49..diagnosed Mar 2005 with platelet level 1132. Am on Aspirin only... levels are slowly increasing..last count was 1200. My next visit to Haemo is February. I feel ok, except for ringing in my ears, sometimes soreness in my feet. Sometimes suffer fatigue. I play golf and also do other exercise. So I am not going to worry too much..no point. Haemo will not put me on Hydroxyurea until platelets go to 1500 or when I reach 60 years of age (some birthday present!!), which ever comes first. I live in Ireland and drink Guinness regularly. Dark beer is supposed to reduce platelets but Guinness has not worked for me. Keep well and try not to worry. p.s. weather is cold here at present. cheers Dave

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