Comments for Kanetta Blog http://kanetta.com The wonderful world of Kanetta! Wed, 17 Feb 2010 21:22:06 -0600 http://wordpress.org/?v=2.8.5 hourly 1 Comment on Thrombocythemia – a Rare Blood Disorder by Susan http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-4474 Susan Wed, 17 Feb 2010 21:22:06 +0000 http://kanetta.com/?p=10#comment-4474 Hello Kanetta, I've been following your blog for over a year and was excited when I read that your oncologist might have new medicine/treatment for you. I'm anxious to know what it is so that I can discuss it with my oncologist. I'm on 1000mg of hydrea daily and, although my counts are holding in the low to mid-500s, my red and white blood cell counts are dropping. Although I made it through the initial shock of this disease, I often fight sadness or the "why me". Please keep the lines of communication open. Because, unlike you, I have no immediate family and your blog is a great way to know that I'm not along. May God bless you and all people affected by ET, Susan Hello Kanetta,

I’ve been following your blog for over a year and was excited when I read that your oncologist might have new medicine/treatment for you. I’m anxious to know what it is so that I can discuss it with my oncologist. I’m on 1000mg of hydrea daily and, although my counts are holding in the low to mid-500s, my red and white blood cell counts are dropping. Although I made it through the initial shock of this disease, I often fight sadness or the “why me”. Please keep the lines of communication open. Because, unlike you, I have no immediate family and your blog is a great way to know that I’m not along.

May God bless you and all people affected by ET,
Susan

]]> Comment on Thrombocythemia – a Rare Blood Disorder by kanettac http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-4473 kanettac Sat, 13 Feb 2010 16:25:02 +0000 http://kanetta.com/?p=10#comment-4473 Saturday, February 13, 2010 Hi Jen, thank you for the comment. I love it when someone takes the time to write to me. ET is a very serious disease but you can live with it and go on with most of the things you like to do. Take the medication that the doctor tells you to take and you shoud do well. I've had the disease for almost 5 years now. My doctor has me on Hydrea 500mg. He also said that a new medicine and/or treatment (I 'm not sure which) is coming out and he is going to try it on me. I plan to put a post up when that happens. Actually, I have been doing very well. I don't like to take medicine but this I am sure to take. My energy level is not what it was and I get light headed sometimes mostly after I eat. This is just something you will learn to live with. In time, your body will start responding to the medicine and the platelets will come down. Thank God that all this was found in time. I also have a posting about how my disease first started on greywords.com click in on Health issues and you will find it. I hope that will help a little. Take care and God bless you, Kanetta Saturday, February 13, 2010 Hi Jen, thank you for the comment. I love it when someone takes the time to write to me. ET is a very serious disease but you can live with it and go on with most of the things you like to do. Take the medication that the doctor tells you to take and you shoud do well. I’ve had the disease for almost 5 years now. My doctor has me on Hydrea 500mg. He also said that a new medicine and/or treatment (I ‘m not sure which) is coming out and he is going to try it on me. I plan to put a post up when that happens. Actually, I have been doing very well. I don’t like to take medicine but this I am sure to take. My energy level is not what it was and I get light headed sometimes mostly after I eat.

This is just something you will learn to live with. In time, your body will start responding to the medicine and the platelets will come down. Thank God that all this was found in time. I also have a posting about how my disease first started on greywords.com click in on Health issues and you will find it. I hope that will help a little. Take care and God bless you, Kanetta

]]> Comment on Thrombocythemia – a Rare Blood Disorder by Jen http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-4472 Jen Thu, 11 Feb 2010 08:01:47 +0000 http://kanetta.com/?p=10#comment-4472 Hi Kanetta, I am 27 years old and was diagnosed with ET recently. I came home from a 9 day hospital stay 6 days ago and I think Im still in a state of shock. My platelet count went over 2million. I guess that was dangerously high. I have been going crazy trying to understand why this would happen. Your blog gave me just a little relief, it was finally something i could relate with. Thank you. I was wondering if anyone has read anything that can link toxic mold to this disease Hi Kanetta,
I am 27 years old and was diagnosed with ET recently. I came home from a 9 day hospital stay 6 days ago and I think Im still in a state of shock. My platelet count went over 2million. I guess that was dangerously high. I have been going crazy trying to understand why this would happen. Your blog gave me just a little relief, it was finally something i could relate with. Thank you.
I was wondering if anyone has read anything that can link toxic mold to this disease

]]> Comment on Essential Thrombocythemia and Acceptance. by Susan W. http://kanetta.com/uncategorized/living-with-essential-thrombocythemia-and-acceptance/comment-page-1/#comment-4471 Susan W. Wed, 16 Dec 2009 16:48:48 +0000 http://kanetta.com/?p=83#comment-4471 Yesterday, I was excited with the results of my bloodwork ... as the result of the 1,000 mg. of hydrea each day, my counts are holding at 538,000. However, I am concerned that (for some unknown reason) my right foot has been going numb. I am anxious to know if any other ET patients have experienced the same problem. Thanks for any feedback. Susan in NC Yesterday, I was excited with the results of my bloodwork … as the result of the 1,000 mg. of hydrea each day, my counts are holding at 538,000. However, I am concerned that (for some unknown reason) my right foot has been going numb. I am anxious to know if any other ET patients have experienced the same problem.

Thanks for any feedback.
Susan in NC

]]> Comment on Thrombocythemia – a Rare Blood Disorder by Susan W. http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-4470 Susan W. Fri, 09 Oct 2009 17:02:58 +0000 http://kanetta.com/?p=10#comment-4470 Susan, I was diagnosed two years ago on my 62nd birthday ... a real surprise & not the gift I had hoped to receive. I began taking 4 anagrelide each day, but the side effects were unbearable ... especially the shortness of breath ... and my counts were all over the place. I began taking 1 hydrea/daily in May of this year and my count immediately jumped 400,000 points in only 2 weeks, bringing me back to around 1.2 million. My dosage was immediately increased to 2/daily. I have what I call my "usual side effects" ... fatigue, abdominal pain, short-lived headaches and lots of nausea. (Frozen pretzels & ginger ale do a lot to help with the nausea.) The most difficult part for me is that, aside from a 92 year old uncle, I have no relatives in the area. But, thanks to my oncologist, his nurse and a few good friends, I do have support. And now, thanks to Kanett's website, I know I'm not alone! Susan W. in NC Susan,

I was diagnosed two years ago on my 62nd birthday … a real surprise & not the gift I had hoped to receive. I began taking 4 anagrelide each day, but the side effects were unbearable … especially the shortness of breath … and my counts were all over the place. I began taking 1 hydrea/daily in May of this year and my count immediately jumped 400,000 points in only 2 weeks, bringing me back to around 1.2 million. My dosage was immediately increased to 2/daily. I have what I call my “usual side effects” … fatigue, abdominal pain, short-lived headaches and lots of nausea. (Frozen pretzels & ginger ale do a lot to help with the nausea.) The most difficult part for me is that, aside from a 92 year old uncle, I have no relatives in the area. But, thanks to my oncologist, his nurse and a few good friends, I do have support. And now, thanks to Kanett’s website, I know I’m not alone!

Susan W. in NC

]]> Comment on Thrombocythemia – a Rare Blood Disorder by Susan http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-4469 Susan Thu, 08 Oct 2009 23:07:11 +0000 http://kanetta.com/?p=10#comment-4469 Hi Susan, Thanks so much for the good advice. I am definitely going to try it. It does make sense. The other thing that I am getting almost every day and sometimes more than 1 a day are the migraines. Today I was in a meeting and I could see it starting with the visual "zigzag". It becomes impossible to see anything and I get so nauseous. It scares me because I wonder what in the world is going on in my head to cause such pain. I did have the headaches before the Hydrea, but was hoping they would stop. But tell me, how are you doing? Are you on Hydrea all the time? Or on and off? What has been your experience, if you don't mind sharing. Thanks to all who are taking the time to read and share. And hi Melissa. Hope you are doing OK. God Bless. Hi Susan,

Thanks so much for the good advice. I am definitely going to try it. It does make sense. The other thing that I am getting almost every day and sometimes more than 1 a day are the migraines. Today I was in a meeting and I could see it starting with the visual “zigzag”. It becomes impossible to see anything and I get so nauseous. It scares me because I wonder what in the world is going on in my head to cause such pain. I did have the headaches before the Hydrea, but was hoping they would stop.

But tell me, how are you doing? Are you on Hydrea all the time? Or on and off? What has been your experience, if you don’t mind sharing.

Thanks to all who are taking the time to read and share. And hi Melissa. Hope you are doing OK.

God Bless.

]]> Comment on Thrombocythemia – a Rare Blood Disorder by Susan W. http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-4468 Susan W. Thu, 08 Oct 2009 22:06:25 +0000 http://kanetta.com/?p=10#comment-4468 Susan, I have experienced "slight" ankle swelling since I've been on 1,000 mg of hydrea daily, but elevating my feet and legs usually resolves the problem. Thank goodness it is only obvious to me and doesn't cause any problems. I also discovered that drinking Ocean Spray diet Cranberry/Pomegranate juice helps with fluid retention. Strange, but it works for me. Susan W. in NC Susan, I have experienced “slight” ankle swelling since I’ve been on 1,000 mg of hydrea daily, but elevating my feet and legs usually resolves the problem. Thank goodness it is only obvious to me and doesn’t cause any problems. I also discovered that drinking Ocean Spray diet Cranberry/Pomegranate juice helps with fluid retention. Strange, but it works for me.

Susan W. in NC

]]> Comment on Thrombocythemia – a Rare Blood Disorder by Susan http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-4467 Susan Thu, 08 Oct 2009 01:47:11 +0000 http://kanetta.com/?p=10#comment-4467 Hello Everyone, I am back. I am so inspired by all of you. I can only share my story and hope that it helps someone get through the bad days - because we all know that if we are writing and reading this - it is a good day. I am continuing on my 1000 mg regimen daily. In the last few days I have started to develop swelling in my feet and ankles. It is a little painful and very uncomfortable. That is the bad part. The good part is that I live in Florida. Thank Heaven for flip-flops! I spoke with the doc 2 days ago and I was encouraged to intake more fluids. I am trying, because I believe that will help. I have to say that the docs and nurses at the center where I am going are so terrific. They respond to phone calls within 20 minutes at the most. I am due for an office visit next week, but if this swelling continues or worsens, I will call for an appointment tomorrow. Has anyone else had this side effect? Bless us all and let's all stay strong. Hello Everyone,

I am back. I am so inspired by all of you. I can only share my story and hope that it helps someone get through the bad days – because we all know that if we are writing and reading this – it is a good day. I am continuing on my 1000 mg regimen daily. In the last few days I have started to develop swelling in my feet and ankles. It is a little painful and very uncomfortable. That is the bad part. The good part is that I live in Florida. Thank Heaven for flip-flops! I spoke with the doc 2 days ago and I was encouraged to intake more fluids. I am trying, because I believe that will help. I have to say that the docs and nurses at the center where I am going are so terrific. They respond to phone calls within 20 minutes at the most. I am due for an office visit next week, but if this swelling continues or worsens, I will call for an appointment tomorrow. Has anyone else had this side effect? Bless us all and let’s all stay strong.

]]> Comment on Thrombocythemia – a Rare Blood Disorder by Susan W. http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/comment-page-1/#comment-4466 Susan W. Wed, 07 Oct 2009 18:32:26 +0000 http://kanetta.com/?p=10#comment-4466 Exhaustion while using hydrea has also been my experience. Some days it is so draining that I spend the entire day doing absolutely nothing. As I told my oncologist, it feels as though I'm carrying 25 pound weights on each arm and 15 pound weights on each leg. Thank goodness this doesn't occur everyday. I think the most unnerving part of hydrea (at least for me) is abdominal pain and nausea. It has been two years since my diagnosis and I'm still seeing my oncologist every 2-4 weeks. To all who read this, remember we are all in this together! Susan W. Exhaustion while using hydrea has also been my experience. Some days it is so draining that I spend the entire day doing absolutely nothing. As I told my oncologist, it feels as though I’m carrying 25 pound weights on each arm and 15 pound weights on each leg. Thank goodness this doesn’t occur everyday. I think the most unnerving part of hydrea (at least for me) is abdominal pain and nausea. It has been two years since my diagnosis and I’m still seeing my oncologist every 2-4 weeks.

To all who read this, remember we are all in this together!

Susan W.

]]> Comment on Essential Thrombocythemia and Acceptance. by Melissa http://kanetta.com/uncategorized/living-with-essential-thrombocythemia-and-acceptance/comment-page-1/#comment-4465 Melissa Tue, 06 Oct 2009 23:23:56 +0000 http://kanetta.com/?p=83#comment-4465 I also suffer migraines with occular auras fairly regularly and headaches that sometimes go on for 5 days or more. I am not on any medications whatsoever and I am taking all natural and herbal supplements. My platelets when diagnosed about 2 years ago were over 800 and are now down to about 630. I also experience numbness in my limbs, especially fingers and legs, heart palpitations, and daily muscle pain with or without exercise. This seems to be the case with everyone whether or not they take the medications or the baby asprin. I'll let you know how my treatment fairs in contrast to western medicine. I also suffer migraines with occular auras fairly regularly and headaches that sometimes go on for 5 days or more. I am not on any medications whatsoever and I am taking all natural and herbal supplements. My platelets when diagnosed about 2 years ago were over 800 and are now down to about 630. I also experience numbness in my limbs, especially fingers and legs, heart palpitations, and daily muscle pain with or without exercise. This seems to be the case with everyone whether or not they take the medications or the baby asprin. I’ll let you know how my treatment fairs in contrast to western medicine.

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