Comments for Kanetta Blog http://kanetta.com The wonderful world of Kanetta! Tue, 27 Mar 2012 14:47:40 +0000 hourly 1 http://wordpress.org/?v=3.0.3 Comment on Thrombocythemia – a Rare Blood Disorder by Susan http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-2/#comment-12022 Susan Tue, 27 Mar 2012 14:47:40 +0000 http://kanetta.com/?p=10#comment-12022 Good news Dennis! I wasn't as lucky as you ... my counts were up 200k even though I've been on 1,000 mil. of hydrea every day. My oncologist increased my dosage from 7,000 mil. a week to 9,000 mil. a week. Amazing how tired that extra amount makes me feel. Susan Good news Dennis! I wasn’t as lucky as you … my counts were up 200k even though I’ve been on 1,000 mil. of hydrea every day. My oncologist increased my dosage from 7,000 mil. a week to 9,000 mil. a week. Amazing how tired that extra amount makes me feel.

Susan

]]> Comment on Thrombocythemia – a Rare Blood Disorder by Dennis http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-2/#comment-11930 Dennis Fri, 23 Mar 2012 19:44:58 +0000 http://kanetta.com/?p=10#comment-11930 Had my three month follow up and my platelets are down 90k from last time to 840k. So far so good. No Hydroxy yet. Had my three month follow up and my platelets are down 90k from last time to 840k. So far so good. No Hydroxy yet.

]]> Comment on ET – A MIND OF IT’S OWN! by Susan http://kanetta.com/uncategorized/et-a-mind-of-its-own/comment-page-1/#comment-11747 Susan Fri, 16 Mar 2012 19:17:10 +0000 http://kanetta.com/?p=125#comment-11747 I was disappointed that the visit with my oncologist didn't go as I had hoped yesterday. My count had jumped another 200,000 points even thought I'm on 1000 mg of hydrea each day. So, now I'm altering my doses ... 1000 mg one day and 1500 the next ... etc., etc., etc. Even through disappointment, I feel very fortunate to have such a wonderful, caring oncologist. Susan I was disappointed that the visit with my oncologist didn’t go as I had hoped yesterday. My count had jumped another 200,000 points even thought I’m on 1000 mg of hydrea each day. So, now I’m altering my doses … 1000 mg one day and 1500 the next … etc., etc., etc.

Even through disappointment, I feel very fortunate to have such a wonderful, caring oncologist.

Susan

]]> Comment on Ups and downs of Essential Thrombocythemia! by Susan http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-11217 Susan Thu, 23 Feb 2012 15:38:05 +0000 http://kanetta.com/?p=65#comment-11217 MB, I'm anxious to hear what you are told re: the clinical trials. Keep us posted. Susan MB,

I’m anxious to hear what you are told re: the clinical trials. Keep us posted.

Susan

]]> Comment on Ups and downs of Essential Thrombocythemia! by Mary Bank http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-10976 Mary Bank Mon, 13 Feb 2012 14:05:55 +0000 http://kanetta.com/?p=65#comment-10976 Hi, I don't know how long I have had ET but was diagnosed with it in my early 40s and almost 28 years later am being referred to a clinical trial at my local cancer center. In the beginning my platelets were over a million but were controlled with hydrea. Platelets dropped to th 500,000 level and varied around that over the years. I am now on 1500 mg hydrea daily and my platelets have climbed to the 800,000 level. At the same time my white and red counts have dropped and my doctor feels the meds are destroyed my bone marrow. I feel good and care for my grandchildren daily. So if I am tired in the late afternoon, that is probably why I think. Interesting that someone mentioned a burning experience and red dots on the skin. I experienced that years ago when I started on hydrea but my dr. didn't think it related. I think it does. Also read about the palpitations when climbing stairs and wondered if it was related. My sister is two years younger than I am, does not have ET but has the palpitations when climbing stairs too. So I put it off to age and needing to exercise more--walking is what I do. I am anxious about my upcoming consultation for an alternate to hydrea esp. after reading about hair loss with inteferon. Guess that should be the least of my worries. Looking forward to comments. MB Hi, I don’t know how long I have had ET but was diagnosed with it in my early 40s and almost 28 years later am being referred to a clinical trial at my local cancer center. In the beginning my platelets were over a million but were controlled with hydrea. Platelets dropped to th 500,000 level and varied around that over the years. I am now on 1500 mg hydrea daily and my platelets have climbed to the 800,000 level. At the same time my white and red counts have dropped and my doctor feels the meds are destroyed my bone marrow. I feel good and care for my grandchildren daily. So if I am tired in the late afternoon, that is probably why I think.

Interesting that someone mentioned a burning experience and red dots on the skin. I experienced that years ago when I started on hydrea but my dr. didn’t think it related. I think it does.

Also read about the palpitations when climbing stairs and wondered if it was related. My sister is two years younger than I am, does not have ET but has the palpitations when climbing stairs too. So I put it off to age and needing to exercise more–walking is what I do.

I am anxious about my upcoming consultation for an alternate to hydrea esp. after reading about hair loss with inteferon. Guess that should be the least of my worries.

Looking forward to comments.
MB

]]> Comment on Ups and downs of Essential Thrombocythemia! by Nicky Smit http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-10199 Nicky Smit Fri, 13 Jan 2012 14:48:20 +0000 http://kanetta.com/?p=65#comment-10199 Hi Kanetta I live in Cape Town South Africa. My daughter of 34 was diagnosed with ET in July 2011. After 14 years of suffering with severe migraiines and after her umbilical cord decalsified she was diagnosed by accident a year after her daughter was born. Her platelets were 1 500 and according to the specialist it should be under 400. According to her doctors she inherited ET and bad cholestorel from her father's side of the family. She already has severe damage to her Aorta as well. She was placed on Hydrea and cholesterol medication immediately and her platlelets dropped dramatically over the first 3 months. We have some of the best doctors in the world, but ET for most of them is something they had never heard of. Jeanne suffers badly from burning calves and feet. Bleeding gums, anxiety attacks, shortness of breath and terrible depression. It does not help that she picked up 10kg. Is it the Hydrea causing all these problems? Do you know of any cases in South Africa? Looking forwrd to hear from you. Nicky Smit Hi Kanetta
I live in Cape Town South Africa. My daughter of 34 was diagnosed with ET in July 2011. After 14 years of suffering with severe migraiines and after her umbilical cord decalsified she was diagnosed by accident a year after her daughter was born. Her platelets were 1 500 and according to the specialist it should be under 400. According to her doctors she inherited ET and bad cholestorel from her father’s side of the family. She already has severe damage to her Aorta as well. She was placed on Hydrea and cholesterol medication immediately and her platlelets dropped dramatically over the first 3 months. We have some of the best doctors in the world, but ET for most of them is something they had never heard of.
Jeanne suffers badly from burning calves and feet. Bleeding gums, anxiety attacks, shortness of breath and terrible depression.
It does not help that she picked up 10kg.
Is it the Hydrea causing all these problems?
Do you know of any cases in South Africa?
Looking forwrd to hear from you.
Nicky Smit

]]> Comment on Essential Thrombocythemia and Acceptance. by Kristen http://kanetta.com/uncategorized/living-with-essential-thrombocythemia-and-acceptance/comment-page-1/#comment-9831 Kristen Thu, 05 Jan 2012 14:44:39 +0000 http://kanetta.com/?p=83#comment-9831 Hi Susan, I was diagnosed with ET a few weeks ago at age 16. In order for me to be asymptomatic, i have to be below 300. The highest I've ever gotten was a few away from 1 million. My face would swell up, i had a headache for a good 5 months straight, I had a mini stroke because my blood was too thick, I would lose the feeling in my face, hands, arms, and legs, I would constantly lose balance, I'd get extremely confused all of the time. I thought it was th worse thing ever. They thought I had MS, so they did a spinal tap. Thankfully, I didn't have that! So, i had to get a bone marrow biopsy and aspiration done. That confirmed that I had ET since my JAK2 came back positive. Right now, I am taking amatriptyline, anagrelide, a baby aspirin, and also an iron supplement because I'm anemic. After reading your pose, along with everyone else's, it made me accept it better. Thank you all and good luck! Hi Susan,
I was diagnosed with ET a few weeks ago at age 16. In order for me to be asymptomatic, i have to be below 300. The highest I’ve ever gotten was a few away from 1 million. My face would swell up, i had a headache for a good 5 months straight, I had a mini stroke because my blood was too thick, I would lose the feeling in my face, hands, arms, and legs, I would constantly lose balance, I’d get extremely confused all of the time. I thought it was th worse thing ever. They thought I had MS, so they did a spinal tap. Thankfully, I didn’t have that! So, i had to get a bone marrow biopsy and aspiration done. That confirmed that I had ET since my JAK2 came back positive. Right now, I am taking amatriptyline, anagrelide, a baby aspirin, and also an iron supplement because I’m anemic. After reading your pose, along with everyone else’s, it made me accept it better. Thank you all and good luck!

]]> Comment on Thrombocythemia – a Rare Blood Disorder 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!

]]> Comment on Thrombocythemia – a Rare Blood Disorder 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

]]> Comment on Thrombocythemia – a Rare Blood Disorder 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.

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