Comments on: Thrombocythemia – a Rare Blood Disorder http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/ The wonderful world of Kanetta! Fri, 13 Jan 2012 14:48:20 +0000 hourly 1 http://wordpress.org/?v=3.0.3 By: Dennis http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-2/#comment-9460 Dennis Wed, 28 Dec 2011 23:58:45 +0000 http://kanetta.com/?p=10#comment-9460 My appointment with my new Oncologist was bittersweet today. When he told me that my disease can get worse by even turning into a form of Leukemia I was quite concerned. My platelets are up 70k to 931k from September's 856k or so. But I may go back down again next time. They are holding off on the Hydroxy Urea as long as possible. If I stay under 1 million I'll be okay with a baby aspirin a day. Wish me well! My appointment with my new Oncologist was bittersweet today. When he told me that my disease can get worse by even turning into a form of Leukemia I was quite concerned. My platelets are up 70k to 931k from September’s 856k or so. But I may go back down again next time. They are holding off on the Hydroxy Urea as long as possible. If I stay under 1 million I’ll be okay with a baby aspirin a day. Wish me well!

]]> By: Susan http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-2/#comment-9459 Susan Wed, 28 Dec 2011 23:52:32 +0000 http://kanetta.com/?p=10#comment-9459 Oops! Saw my oncologist 2 weeks ago and although my platlet count had dropped 110,000 points to 600,000, my red blood count is now on the rise. Just something else to keep tabs on. This really is a weird disease. Happy new year to my fellow ETers. Susan Oops! Saw my oncologist 2 weeks ago and although my platlet count had dropped 110,000 points to 600,000, my red blood count is now on the rise. Just something else to keep tabs on.

This really is a weird disease.

Happy new year to my fellow ETers.
Susan

]]> By: Dennis http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-2/#comment-8934 Dennis Sat, 17 Dec 2011 01:22:47 +0000 http://kanetta.com/?p=10#comment-8934 Have an appointment after Christmas with my new Oncologist (haven't met him yet) It's been a few months and hopefully my numbers are less than last time. Have an appointment after Christmas with my new Oncologist (haven’t met him yet) It’s been a few months and hopefully my numbers are less than last time.

]]> By: Susan http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-2/#comment-7703 Susan Tue, 25 Oct 2011 17:09:14 +0000 http://kanetta.com/?p=10#comment-7703 Sorry to heard that the news about your mother. It has been 4 years since I was diagnosed with ET (at the age of 62) and I found the first 6 months to be the most difficult; however, I believe it was because I didn't understand the disease. I also take hydrea (1000mg daily) and fight extreme exhaustion, but your mother should have a much easier experience since she takes only 500 mg daily. Re: Regaining the quality of life ... I would say YES she will ... with knowledge comes a better understanding of this disease and a reason to keep on, keeping on! FYI: Google Mayo Clinic - Dr. Ruben Mesa's speech on Essential Thrombocythemia. It's excellent. Best wishes to your mother! Susan Sorry to heard that the news about your mother. It has been 4 years since I was diagnosed with ET (at the age of 62) and I found the first 6 months to be the most difficult; however, I believe it was because I didn’t understand the disease. I also take hydrea (1000mg daily) and fight extreme exhaustion, but your mother should have a much easier experience since she takes only 500 mg daily. Re: Regaining the quality of life … I would say YES she will … with knowledge comes a better understanding of this disease and a reason to keep on, keeping on! FYI: Google Mayo Clinic – Dr. Ruben Mesa’s speech on Essential Thrombocythemia. It’s excellent.

Best wishes to your mother!
Susan

]]> By: Courtzzz http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-2/#comment-7686 Courtzzz Mon, 24 Oct 2011 20:54:42 +0000 http://kanetta.com/?p=10#comment-7686 My 73 year old mother was just diagnosed after 6 months of being bed ridden-- and undergoing every test under the sun until the oncologist finally figured it out. She started taking Hydrea (500MG Daily) and after 2 weeks her platelets were down 30%. The doctor seems to think it will take 4-6 weeks before she feels better, after platelets normalize and swelling comes down. Does this seem realistic? I want her to regain some quality of life. Thanks! My 73 year old mother was just diagnosed after 6 months of being bed ridden– and undergoing every test under the sun until the oncologist finally figured it out. She started taking Hydrea (500MG Daily) and after 2 weeks her platelets were down 30%. The doctor seems to think it will take 4-6 weeks before she feels better, after platelets normalize and swelling comes down. Does this seem realistic? I want her to regain some quality of life. Thanks!

]]> By: Dennis http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-7384 Dennis Sun, 02 Oct 2011 23:41:55 +0000 http://kanetta.com/?p=10#comment-7384 Went for my check-up a couple weeks ago and found that my numbers are down 100,000 this time to around 836K. My oncologist has moved on to a new hospital in another state and I wish him good luck. Hopefully my new one will be as good. Went for my check-up a couple weeks ago and found that my numbers are down 100,000 this time to around 836K. My oncologist has moved on to a new hospital in another state and I wish him good luck. Hopefully my new one will be as good.

]]> By: Susan http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-7037 Susan Tue, 23 Aug 2011 20:04:38 +0000 http://kanetta.com/?p=10#comment-7037 Another disappointing visit with my oncologist last week. My count had jumped another 16,000 points, which brings me to an almost 200,000 increase over the past 4 months. Once again, we are discussing the probability that I will need to increase my hydrea to 3 times daily. Oh well, I'll just do whatever is needed to keep my ET under control. Susan in NC Another disappointing visit with my oncologist last week. My count had jumped another 16,000 points, which brings me to an almost 200,000 increase over the past 4 months. Once again, we are discussing the probability that I will need to increase my hydrea to 3 times daily. Oh well, I’ll just do whatever is needed to keep my ET under control.

Susan in NC

]]> By: Susan http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-6485 Susan Tue, 26 Jul 2011 19:18:21 +0000 http://kanetta.com/?p=10#comment-6485 Dennis, I was so happy (and relieved) to see that you had gone back to see your doctor. It was the smart thing to do. This is one disease that can't be ignored. Susan in NC Dennis,

I was so happy (and relieved) to see that you had gone back to see your doctor. It was the smart thing to do. This is one disease that can’t be ignored.

Susan in NC

]]> By: Dennis http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-6463 Dennis Mon, 25 Jul 2011 00:58:18 +0000 http://kanetta.com/?p=10#comment-6463 Went back for a follow-up a couple weeks ago and it appears that my platelets rose by 100,000. But I'm still under a million. haven't been to him in nearly a year. He says it should be checked every three months or so. No hydrea is recommended until I reach over 1.5 million. Went back for a follow-up a couple weeks ago and it appears that my platelets rose by 100,000. But I’m still under a million. haven’t been to him in nearly a year. He says it should be checked every three months or so. No hydrea is recommended until I reach over 1.5 million.

]]> By: wendy http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-6461 wendy Sun, 24 Jul 2011 17:56:57 +0000 http://kanetta.com/?p=10#comment-6461 Hi, all! I just re-read my own blog from 3 years ago and I realize that this is a chronic disease...i.e. don't expect medication to make it "go away" and for the platelets to stop rising as soon as you stop taking the meds, or if the body gets resistant to the meds. When I wrote in 3 years ago, I was only on baby aspirin. I still believe that there are probably foods which help to lower (or raise) platelets, and supplements that one could take. Has anyone tried the natural way? Is there a natural treatment? I would love to get off the H.U. train and figure out what all of us have in common and what the real cause is (aside from the JAK 2 factor). Hi, all! I just re-read my own blog from 3 years ago and I realize that this is a chronic disease…i.e. don’t expect medication to make it “go away” and for the platelets to stop rising as soon as you stop taking the meds, or if the body gets resistant to the meds. When I wrote in 3 years ago, I was only on baby aspirin. I still believe that there are probably foods which help to lower (or raise) platelets, and supplements that one could take. Has anyone tried the natural way? Is there a natural treatment? I would love to get off the H.U. train and figure out what all of us have in common and what the real cause is (aside from the JAK 2 factor).

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