Comments on: Ups and downs of Essential Thrombocythemia! http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/ The wonderful world of Kanetta! Tue, 27 Mar 2012 14:47:40 +0000 hourly 1 http://wordpress.org/?v=3.0.3 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

]]> 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

]]> 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

]]> By: denise McBean http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-4801 denise McBean Wed, 09 Feb 2011 10:28:34 +0000 http://kanetta.com/?p=65#comment-4801 Hi Guys I am now 59 and I was diagnosed at 42 with ET with count of 1.000,000 but now I sit at about 650,000 I take Hydea and i do have the JAK2 gene I have done lots f study on this disorder and a theory of mine is that I may have gotten it from benzine in Hair dye as I was a hairdresser for many many years and I believe we can acquire this disease through environment...I find i have itchy skin that seems to be the most obvious problem apart from that all good I dont feel I have anything I have done so much study on the disease as I know we will all live normal lives I think I have had this for years as when I think back I remember so may symptoms I had but no one thought anything .. Any hoo Guys all will be well keep smiling ... Hi Guys I am now 59 and I was diagnosed at 42 with ET with count of 1.000,000 but now I sit at about 650,000 I take Hydea and i do have the JAK2 gene I have done lots f study on this disorder and a theory of mine is that I may have gotten it from benzine in Hair dye as I was a hairdresser for many many years and I believe we can acquire this disease through environment…I find i have itchy skin that seems to be the most obvious problem apart from that all good I dont feel I have anything I have done so much study on the disease as I know we will all live normal lives I think I have had this for years as when I think back I remember so may symptoms I had but no one thought anything .. Any hoo Guys all will be well keep smiling …

]]> By: louisa toureiro http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-4752 louisa toureiro Fri, 28 Jan 2011 08:53:38 +0000 http://kanetta.com/?p=65#comment-4752 Hi Kanetta hope you are well .How is your et count mine at the momente is 600 we will see iam still tired all the time but life goes one still on folic acid. Dawn i also have palpitations if i get very tired or go up stairs. Mybest wishes for everyone Hi Kanetta hope you are well .How is your et count
mine at the momente is 600 we will see iam still tired all the time but life goes one still on folic acid.
Dawn i also have palpitations if i get very tired or go up stairs.
Mybest wishes for everyone

]]> By: Dawn http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-1550 Dawn Tue, 07 Apr 2009 17:18:31 +0000 http://kanetta.com/?p=65#comment-1550 Hi Kanetta and everyone It's me again. Hope all of you are ok. I was put on Anargrelide for 3 months. My platelet rose from 280k to 480k (last couple weeks) but doc said it was okay if the rising was not more than 600k. She said Anargrelide is better for me because I was diagnosed at only 45 and I have to use long term medication. I read about the comparison of Anargrelide and Hydroxyurea and found some defect of both. I have palpitation sometimes after Anargrelide used and also was tired as well. I'm not sure that it is appropriate to me or not ? Hi Kanetta and everyone

It’s me again. Hope all of you are ok.
I was put on Anargrelide for 3 months. My platelet rose from 280k to 480k (last couple weeks) but doc said it was okay if the rising was not more than 600k. She said Anargrelide is better for me because I was diagnosed at only 45 and I have to use long term medication. I read about the comparison of Anargrelide and Hydroxyurea and found some defect of both. I have palpitation sometimes after Anargrelide used and also was tired as well. I’m not sure that it is appropriate to me or not ?

]]> By: Karen http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-497 Karen Wed, 25 Feb 2009 03:20:19 +0000 http://kanetta.com/?p=65#comment-497 I was diagnosed with ET in 2004.We didn't do much about it except watch my blood levels and my platlets until I had a clot in a vein and lost 3 pints of blood.I have JAK2 and another clotting problem called Factor V Leiden.I was then put on Hydroxyurea,1000 my daily except one day it is 1500mg.Everything seems to be doing well except the fatigue.I haven't figured out if I am as fatigued as I had been for so long or if from going through that I have gotten so used to it. Did you have symtoms before you found out you had this or did you find out after a blood test for other reasons? I found out because I was getting hives on the soles of my feet,always being short of breeath whenever I did something and my calves would hurt whenever I worked.Of course the doctors thought it was blocked arteries but after an angiogram they knew it wasn't that.I also was put on blood thinner.I know I will keep fighting this though..I am going to rule it instead of it ruling my life.It is great to see you put your blog on here.Hopefully more people will become aware of this ET I was diagnosed with ET in 2004.We didn’t do much about it except watch my blood levels and my platlets until I had a clot in a vein and lost 3 pints of blood.I have JAK2 and another clotting problem called Factor V Leiden.I was then put on Hydroxyurea,1000 my daily except one day it is 1500mg.Everything seems to be doing well except the fatigue.I haven’t figured out if I am as fatigued as I had been for so long or if from going through that I have gotten so used to it. Did you have symtoms before you found out you had this or did you find out after a blood test for other reasons? I found out because I was getting hives on the soles of my feet,always being short of breeath whenever I did something and my calves would hurt whenever I worked.Of course the doctors thought it was blocked arteries but after an angiogram they knew it wasn’t that.I also was put on blood thinner.I know I will keep fighting this though..I am going to rule it instead of it ruling my life.It is great to see you put your blog on here.Hopefully more people will become aware of this ET

]]> By: mary http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-353 mary Sun, 22 Feb 2009 15:43:03 +0000 http://kanetta.com/?p=65#comment-353 hi all, i was diagnosed with ET march 2008 with platelets at about 500, also jak 2 positive. i am 61yrs old and my dr. is waiting until platelets reach 600 before starting me on hydrea i take 1 low does asprin a day and my platelets range from 500-580, a few weeks ago they were 525. i am nervous about having to start with hydrea because of side effects, but try not to worry about it until i have to start taking it..who knows i may tolerate it fine. i have migraines but my entire family has them and since i have started a new ( bio identical ) estrogen and a lower dose they are much better. my right leg aches at times, but i have had that off and on for at least 2yrs and it seems to do better if i sleep with a pillow between my leg, so not sure that has anything to do with my ET. i am going to the patient mpd conference at mayo/ phoenix next week end, hope to learn alot and will pass it on. good luck to all. hi all, i was diagnosed with ET march 2008 with platelets at about 500, also jak 2 positive. i am 61yrs old and my dr. is waiting until platelets reach 600 before starting me on hydrea i take 1 low does asprin a day and my platelets range from 500-580, a few weeks ago they were 525. i am nervous about having to start with hydrea because of side effects, but try not to worry about it until i have to start taking it..who knows i may tolerate it fine. i have migraines but my entire family has them and since i have started a new ( bio identical ) estrogen and a lower dose they are much better. my right leg aches at times, but i have had that off and on for at least 2yrs and it seems to do better if i sleep with a pillow between my leg, so not sure that has anything to do with my ET. i am going to the patient mpd conference at mayo/ phoenix next week end, hope to learn alot and will pass it on. good luck to all.

]]> By: stacey hayes http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-220 stacey hayes Fri, 13 Feb 2009 11:41:39 +0000 http://kanetta.com/?p=65#comment-220 I have et and have been on hydrea for 3 years, before that I was on Agrilyn, which did not agree with me. I was wondering if anyone put on weight from hydrea, i cant seem to lose 10 extra pounds. I am also on Coumadin, because I had a blood clot in the colon, I am a high risk person. I have et and have been on hydrea for 3 years, before that I was on Agrilyn, which did not agree with me. I was wondering if anyone put on weight from hydrea, i cant seem to lose 10 extra pounds. I am also on Coumadin, because I had a blood clot in the colon, I am a high risk person.

]]> By: Marilyn http://kanetta.com/uncategorized/ups-and-downs-of-essential-thrombocythemia/comment-page-1/#comment-215 Marilyn Mon, 09 Feb 2009 15:00:23 +0000 http://kanetta.com/?p=65#comment-215 I have had similar good experience with hydrea. it took a little while (couple of months) to reduce the platelets so the dr. upped the dosage to 500 mg 2x daily. then my plateletes dropped from 800 to 285. it is a little scary to me because what if they keep dropping. but tomorrow i will be weaned off hydrea and starting pegasys. little afraid of that too since I have been doing so well on the hydrea. it's just that i'm 49 and they are afraid of long-term use. good luck to you. I have had similar good experience with hydrea. it took a little while (couple of months) to reduce the platelets so the dr. upped the dosage to 500 mg 2x daily. then my plateletes dropped from 800 to 285. it is a little scary to me because what if they keep dropping. but tomorrow i will be weaned off hydrea and starting pegasys. little afraid of that too since I have been doing so well on the hydrea. it’s just that i’m 49 and they are afraid of long-term use. good luck to you.

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