Comments for Kanetta Blog http://kanetta.com The wonderful world of Kanetta! Fri, 13 Jan 2012 14:48:20 +0000 hourly 1 http://wordpress.org/?v=3.0.3 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.

]]> 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-7728 Susan Thu, 27 Oct 2011 16:16:25 +0000 http://kanetta.com/?p=125#comment-7728 Kanetta, Sorry to hear that you had such a drastic increase in your platlet count. I have come to realsize that ET is truly strange disease. I saw my oncologist last week and my count had dropped a little, but only a little. My counts are still running all over the place; however, we decided not to increase my hydrea at this time ... currently I'm on 1000 mg/daily. I don't know if other bloggers are encountering problems having their hydrea prescriptions filled, but I am. My pharmacist said that for some unknown reason the distributor has been unable to supply him with enough to keep me going for more than a couple of weeks. I spoke with my oncologist about the shortage and he indicated a shortage in several chemo drugs. It's alarming to say the least. Keep your readers up-to-date on your condition. Susan Kanetta,

Sorry to hear that you had such a drastic increase in your platlet count. I have come to realsize that ET is truly strange disease. I saw my oncologist last week and my count had dropped a little, but only a little. My counts are still running all over the place; however, we decided not to increase my hydrea at this time … currently I’m on 1000 mg/daily. I don’t know if other bloggers are encountering problems having their hydrea prescriptions filled, but I am. My pharmacist said that for some unknown reason the distributor has been unable to supply him with enough to keep me going for more than a couple of weeks. I spoke with my oncologist about the shortage and he indicated a shortage in several chemo drugs. It’s alarming to say the least.

Keep your readers up-to-date on your condition.

Susan

]]> Comment on Thrombocythemia – a Rare Blood Disorder 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

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

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

]]> Comment on Essential Thrombocythemia and the rest of your life. by Oliver http://kanetta.com/uncategorized/essential-thrombocythemia-and-the-rest-of-your-life/comment-page-1/#comment-7272 Oliver Wed, 21 Sep 2011 23:26:25 +0000 http://kanetta.com/?p=101#comment-7272 <i>Hi Kanetta, I was just diagnosed with ET earlier this month. when I went in my count was around 2 million. I was having some serious stomach pain when I went in. I was in a huge stomach pain. I am only 20 years old. I was on a huge amount of hydrea while in the hospital, I could not eat hardly at all. They lowered my dose i think its 2000 mg a day now. I have got my appetite back and am having little to no side effects from the meds so far. Anyone have any advice or stories from living a long time with ET? do you guys know of any other helpful websites or any other helpful information regarding living with ET.</i> +1 Hi Kanetta,
I was just diagnosed with ET earlier this month. when I went in my count was around 2 million. I was having some serious stomach pain when I went in. I was in a huge stomach pain. I am only 20 years old. I was on a huge amount of hydrea while in the hospital, I could not eat hardly at all. They lowered my dose i think its 2000 mg a day now. I have got my appetite back and am having little to no side effects from the meds so far. Anyone have any advice or stories from living a long time with ET? do you guys know of any other helpful websites or any other helpful information regarding living with ET.
+1

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