Comments for Kanetta Blog http://kanetta.com The wonderful world of Kanetta! Wed, 07 Jan 2009 11:36:19 +0000 http://wordpress.org/?v=2.6 Comment on Kanetta Update by Dawn http://kanetta.com/kanettas-medical-update-august-2008/kanetta-update/#comment-207 Dawn Mon, 01 Dec 2008 16:06:00 +0000 http://kanetta.com/?p=39#comment-207 Hi Me too, I was diagnosed in last 4 months by routine check up with platelets 1200k. I was put on Hydrea 1000 mg/day. Now, my platelets is staying at around 400k. Before that I often had headache but after treatment started it had gone. I am also tired more often. My last visit to doc, the medication was changed to Anagrelide because doc said it has less side effect than Hydrea for a long term using. I will tell you again about Anagrelide after taking for more than a couple weeks. Bye. Take care Hi

Me too, I was diagnosed in last 4 months by routine check up with platelets 1200k. I was put on Hydrea 1000 mg/day. Now, my platelets is staying at around 400k. Before that I often had headache but after treatment started it had gone. I am also tired more often. My last visit to doc, the medication was changed to Anagrelide because doc said it has less side effect than Hydrea for a long term using. I will tell you again about Anagrelide after taking for more than a couple weeks. Bye.

Take care

]]> Comment on Thrombocythemia - a Rare Blood Disorder by Dorothy http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/#comment-205 Dorothy Thu, 20 Nov 2008 21:45:44 +0000 http://kanetta.com/?p=10#comment-205 I'm 47 yrs and diagnosed with ET 4 months ago after going to BUPA to try and find out why I was suffering from migraines 1 every 2 to 3 days. I was started on aspirin and 500 mg of Hydroxyurea 5 out of 7days of the week. I'm not doing bad except for being tired, the migraines, mouth ulcers and the hair thinning (my husband said, at least the hair lose doesn't hurt!) and of course he's right. I want to get back to exercising as I too fit some years ago, but I reckon I've been suffering with ET for at least 5 years. In the last 3 or so weeks the migraines have reduced to 1 every 4 to 5 days so that's a huge improvement. I don't usually do blogs but thought the symptoms might be helpful to know about if someone else is suffering, especially with migraines I also get light headed but not sure if that's the drugs or ET? Anyway, keep positive it helps. I’m 47 yrs and diagnosed with ET 4 months ago after going to BUPA to try and find out why I was suffering from migraines 1 every 2 to 3 days. I was started on aspirin and 500 mg of Hydroxyurea 5 out of 7days of the week. I’m not doing bad except for being tired, the migraines, mouth ulcers and the hair thinning (my husband said, at least the hair lose doesn’t hurt!) and of course he’s right. I want to get back to exercising as I too fit some years ago, but I reckon I’ve been suffering with ET for at least 5 years. In the last 3 or so weeks the migraines have reduced to 1 every 4 to 5 days so that’s a huge improvement. I don’t usually do blogs but thought the symptoms might be helpful to know about if someone else is suffering, especially with migraines I also get light headed but not sure if that’s the drugs or ET? Anyway, keep positive it helps.

]]> Comment on Thrombocythemia - a Rare Blood Disorder by wendy chai http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/#comment-203 wendy chai Thu, 13 Nov 2008 03:08:46 +0000 http://kanetta.com/?p=10#comment-203 Hi Kanetta, Thank you for publishing your story. I too am female, and aged 55 years. I have had essential thrombocytosis for aprox. 3 years, and have gradually increased to over 1.5 million platelets. I have no symptoms....well, I have always been easily fatigued. I was quite anemic for a time after having my children (20 years ago) since I had 3 in 3 years and didn't take vitamins. I also didn't take the iron when I was anemic, thus I was always fatigued and experienced hair loss, but I hated taking it because it was constipating. stupid of me! Anyways, I don't know if the e.t. is caused by untreated anemia. someone told me that if your blood doesn't have one thing (iron) it might start over producing something else (platelets). I must agree with you that the primary symptom of this is FEAR!!!! You feel that you are on the train tracks waiting for the train to come along. I am only on baby aspirin, because I understand that without symptoms, you can wait before taking the platelet lowering meds, which definitely have side effects. But from reading your email, it sounds like you get used to the side effects. What about interferon? although it is expensive, I understand that if you take it and your platelets are lowered, the effect can last for years, as opposed to the others which get high again the minute you reduce or stop taking the meds. Hi Kanetta,
Thank you for publishing your story. I too am female, and aged 55 years. I have had essential thrombocytosis for aprox. 3 years, and have gradually increased to over 1.5 million platelets. I have no symptoms….well, I have always been easily fatigued. I was quite anemic for a time after having my children (20 years ago) since I had 3 in 3 years and didn’t take vitamins. I also didn’t take the iron when I was anemic, thus I was always fatigued and experienced hair loss, but I hated taking it because it was constipating. stupid of me! Anyways, I don’t know if the e.t. is caused by untreated anemia. someone told me that if your blood doesn’t have one thing (iron) it might start over producing something else (platelets). I must agree with you that the primary symptom of this is FEAR!!!! You feel that you are on the train tracks waiting for the train to come along. I am only on baby aspirin, because I understand that without symptoms, you can wait before taking the platelet lowering meds, which definitely have side effects. But from reading your email, it sounds like you get used to the side effects. What about interferon? although it is expensive, I understand that if you take it and your platelets are lowered, the effect can last for years, as opposed to the others which get high again the minute you reduce or stop taking the meds.

]]> Comment on Kanetta’s update / ESSENTIAL THROMBOCYTHEMIA AND COPING by Doris http://kanetta.com/uncategorized/kanettas-update-essential-thrombocythemia-and-coping/#comment-197 Doris Sat, 08 Nov 2008 23:42:26 +0000 http://kanetta.com/?p=54#comment-197 hello, I too have ET hello, I too have ET

]]> Comment on Thrombocythemia - a Rare Blood Disorder by Blake http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/#comment-196 Blake Wed, 05 Nov 2008 00:31:32 +0000 http://kanetta.com/?p=10#comment-196 Hi Kanetta, I don't usually post on blogs, but I saw yours while researching ET and decided to go for it. I was dagnosed a little over a year ago, when after my routine annual physical exam, my GP told me to come in for a repeat blood test - he initially assumed there was a problem with the lab work and wanted to make sure. The second CBC confirmed I had a platelet count of over 1.5 million. I had no other obvious symptoms. This was a great concern to my doctors as I have hypertension and a family history of heart disease, and am on very aggressive cholesterol reduction therapy. Naturally my GP and cardiologist were worried about thrombosis or other some coronary event. I was referred to a hematologist who ordered several CT-scans and an MRI, then finally diagnosed ET. The really weird thing I should mention, is that by strange coincidence I had been to another doctor just one month before the initial discovery for a completely unrelated issue (a cellulitis in my leg), and they had also done a CBC. So I contacted that dr. office and got a copy of that CBC and guess what - my platelet count was completely normal! Somehow I had developed ET with a platelet count above 1.5 mill. in less that one month's time!! Mt Hematologist started me on Hydroxyurea at 1000 mg per day, which really wiped me out - I had gone from being able to exercise vigorously 3-5 days per week, to having a hard time staying on me feet for a whole day. After several months my platelet count dropped to about 450K, and he reduced my dose to 500 mg per day. At this point I started getting used to the Hydroxyurea and was able to start exercising again, although I would (and still) develop a minor skin rash after exercising -- tiny red flat dots beneath the skin on lower legs and ankles. Unfortunately, this lower dose was insufficient and they started creeping back up again. Finally he switched me to 1000 mg on M-W-F and 500 mg on the other days of the week. This seems to be the magic dose for me, as my platelets have now been holding around 270K for the past 5 months. Now, I basically feel like I am living a normal life and can do pretty much whatever I want, whenver I want to. I try not to think about the long term prognosis or worry about possible disease progression. I don't especially enjoy going to the cancer center every 2 months for blood work, but when I look at all the other patients there, I realize that it could be much much worse, and I am actually very lcuky. I hope you are doing well with your ET. Hi Kanetta,

I don’t usually post on blogs, but I saw yours while researching ET and decided to go for it. I was dagnosed a little over a year ago, when after my routine annual physical exam, my GP told me to come in for a repeat blood test - he initially assumed there was a problem with the lab work and wanted to make sure. The second CBC confirmed I had a platelet count of over 1.5 million. I had no other obvious symptoms.

This was a great concern to my doctors as I have hypertension and a family history of heart disease, and am on very aggressive cholesterol reduction therapy. Naturally my GP and cardiologist were worried about thrombosis or other some coronary event. I was referred to a hematologist who ordered several CT-scans and an MRI, then finally diagnosed ET.

The really weird thing I should mention, is that by strange coincidence I had been to another doctor just one month before the initial discovery for a completely unrelated issue (a cellulitis in my leg), and they had also done a CBC. So I contacted that dr. office and got a copy of that CBC and guess what - my platelet count was completely normal! Somehow I had developed ET with a platelet count above 1.5 mill. in less that one month’s time!!

Mt Hematologist started me on Hydroxyurea at 1000 mg per day, which really wiped me out - I had gone from being able to exercise vigorously 3-5 days per week, to having a hard time staying on me feet for a whole day.

After several months my platelet count dropped to about 450K, and he reduced my dose to 500 mg per day. At this point I started getting used to the Hydroxyurea and was able to start exercising again, although I would (and still) develop a minor skin rash after exercising — tiny red flat dots beneath the skin on lower legs and ankles.

Unfortunately, this lower dose was insufficient and they started creeping back up again. Finally he switched me to 1000 mg on M-W-F and 500 mg on the other days of the week. This seems to be the magic dose for me, as my platelets have now been holding around 270K for the past 5 months.

Now, I basically feel like I am living a normal life and can do pretty much whatever I want, whenver I want to. I try not to think about the long term prognosis or worry about possible disease progression. I don’t especially enjoy going to the cancer center every 2 months for blood work, but when I look at all the other patients there, I realize that it could be much much worse, and I am actually very lcuky. I hope you are doing well with your ET.

]]> Comment on Kanetta Update by Rachel http://kanetta.com/kanettas-medical-update-august-2008/kanetta-update/#comment-195 Rachel Wed, 29 Oct 2008 05:50:16 +0000 http://kanetta.com/?p=39#comment-195 Hi, I was diagnosed with ET 15 years ago and have been going strong ever since. Sure I've had a few TIA's and ups and downs with the meds over the years, but also in that time I've had two healthy babies (that they said I'd never have). I agree with the Hydrea comments, it makes me feel really tired and upsets my stomach. But Interferon is worse! For me anyway. I hate feeling like you're living with a bomb ready to go off when it comes to the clotting risk. Like Michelle I too went off Hydrea for a year at a time, but the platelets always rise back up to an unacceptably risky number. That being said, the only clots I've had were always when my platelets were at a normal count. Go figure! Hi,

I was diagnosed with ET 15 years ago and have been going strong ever since. Sure I’ve had a few TIA’s and ups and downs with the meds over the years, but also in that time I’ve had two healthy babies (that they said I’d never have). I agree with the Hydrea comments, it makes me feel really tired and upsets my stomach. But Interferon is worse! For me anyway. I hate feeling like you’re living with a bomb ready to go off when it comes to the clotting risk. Like Michelle I too went off Hydrea for a year at a time, but the platelets always rise back up to an unacceptably risky number. That being said, the only clots I’ve had were always when my platelets were at a normal count. Go figure!

]]> Comment on Kanetta Update by Michelle http://kanetta.com/kanettas-medical-update-august-2008/kanetta-update/#comment-193 Michelle Thu, 16 Oct 2008 08:02:17 +0000 http://kanetta.com/?p=39#comment-193 Hello, Nicoe to have found your blog.....I two have ET. I was diagnoised in 2003...I am amazed that you and I hae IDENTICAL SYMPTOMS.....they also told me it wa silent migraines, mine showed up in my blood . I was taking hydrea for 4 years until this past May I made the decision, along with my husband to go off of it. I was tired of feeling tired....so here I am doing ok..my platelets are staying around 863,000. So I guess I must live with it.....thanks for the blog and info Hello,

Nicoe to have found your blog…..I two have ET. I was diagnoised in 2003…I am amazed that you and I hae IDENTICAL SYMPTOMS…..they also told me it wa silent migraines, mine showed up in my blood . I was taking hydrea for 4 years until this past May I made the decision, along with my husband to go off of it. I was tired of feeling tired….so here I am doing ok..my platelets are staying around 863,000. So I guess I must live with it…..thanks for the blog and info

]]> Comment on Kanetta Update by Linda http://kanetta.com/kanettas-medical-update-august-2008/kanetta-update/#comment-191 Linda Tue, 14 Oct 2008 00:15:14 +0000 http://kanetta.com/?p=39#comment-191 Hi Kanetta, I was just diagnosed with ET a couple of weeks ago. I went in for a routine annual exam, mentioned to my doc that I was feeling lousy, she ordered blood tests and the race was on. Multiple doctor appointments, blood tests, bone marrow biopsy, etc. later I was diagnosed with this strange disease called Essential Thrombocythemia. I am currently on 1000 mg Hydrea daily. The problem is I still feel awful. I'm very frustrated right now. Any way I'd like to correspond with you. Perhaps we can support each other and provide each other with information since it seems to be relatively hard to come by. By the way my next appointment is also October 28. Take care and be well. Linda Hi Kanetta,
I was just diagnosed with ET a couple of weeks ago. I went in for a routine annual exam, mentioned to my doc that I was feeling lousy, she ordered blood tests and the race was on. Multiple doctor appointments, blood tests, bone marrow biopsy, etc. later I was diagnosed with this strange disease called Essential Thrombocythemia.
I am currently on 1000 mg Hydrea daily. The problem is I still feel awful. I’m very frustrated right now.
Any way I’d like to correspond with you. Perhaps we can support each other and provide each other with information since it seems to be relatively hard to come by. By the way my next appointment is also October 28.
Take care and be well.
Linda

]]> Comment on Thrombocythemia - a Rare Blood Disorder by James http://kanetta.com/kanettas-early-symtoms/thrombocythemia-search/#comment-2 James Sat, 23 Aug 2008 23:59:16 +0000 http://kanetta.com/?p=10#comment-2 Great stuff Kanetta. I really enjoy seeing your thought on the net. Great stuff Kanetta. I really enjoy seeing your thought on the net.

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