Kanetta Blog
The wonderful world of Kanetta!



    • Thrombocythemia – a Rare Blood Disorder

    August 8th, 2008 . by admin


    My name is Kanetta and I have Essential Thrombocythemia.

    The reason I started this blog is to let other people who have this disease know that they are not alone. When I was first diagnosed, I tried to find information on this little known and rare disease and could not find much on it. There is no cure. My oncologist is very involved in the research to find a cure. When my illness was first diagnosed, I think one of the things I really wanted to know was how other victims of this disease have coped and if there was any light at the end of the tunnel. I can tell you right now that there is a light and you can make it as bright as you want it to be.

    Let me start by telling you how my ET (Essential Thrombocythemia) was discovered and diagnosed. First of all they put essential in front of thrombocythemia because they don’t know how I got it or where it came from. I do know that I had been on hormone replacement therapy for at least 20 to 25 years and when this disease was diagnosed the doctors told me to stop taking it NOW. However, they tell me that they don’t think that is what caused it.

    This disease was first diagnosed in November 2005. At this writing, it has been almost 3 years. For about a year prior to my diagnosis, I had experienced a burning sensation on the tips of my fingers and toes. This would come and go. The really awful symptom that was so very painful was the extreme ache in my leg muscles. It felt as if I had been on a treadmill or a bicycle for hours. My muscles would feel like they were burning if I only walked a few steps. I can remember one incident when the pain was so bad that I had to lean up against a store front at the mall. A sales lady came up and ask me if I was okay. I knew the pain would go away in a little while if I could just sit down. Sometimes, I would experience spots in my vision. The spots were like very bright lights that were blocking out my sight. Most of the time it looked like a jagged piece of broken glass. One time when I was at my office, I looked down at a document that I had been working on and the whole inside of the paper was a bright light with a jagged circular pattern around it. Throughout all of these symptoms, I had gone to doctors continuously to find out why I was having these symptoms, but they obviously didn’t think it was anything to be of a concern. I think that was because I am basically an upbeat person and I don’t look sick. On my own, I went to an optomologist to see of something was happening to my sight. I had gone to him at least twice before and then on one visit he showed me a chart and ask me if the spots looked like that. It did in a way. He said that was what people sometimes see who have migraine headaches. He said I must be having migraines without the head ache.

    I ended up in the emergency room two different times when I fainted. Once in a convenience store, where thank God I was with my husband and the second time at home with my family. They did a brain CAT scan during one of the times. Everything came up normal. No one there could give me an answer as to what was wrong with me.

    I made my yearly appointment for my mammogram and they found a small area of cancer in my left breast. It was located very close to the skin and the doctor did not think it was anything to be concerned about but it had to come out. I went into the hospital and they drew my blood. The day of the surgery, the doctor came out and told me that I had an elevated blood platelet count of over 1 million. They almost did not do the surgery, but after a telephone call and an okay from my future oncologist, they did the operation.

    I made an appointment and went alone to see the oncologist and I was not worried in the slightest. I thought he would probably just give me a pill and I’ll be fine. I didn’t think anything serious was wrong with me. I had had the cancerous tissue removed from my breast and I thought that was the worst part. How little did I know. He examined me, looked at my chart and then ask me if I had any love ones with me because he wanted to talk to me and he wanted them to come into the room to be with me. I told him that I had come alone. He proceeded to tell me that I had a disease called Essential Thrombocythemia and I had too many blood platelets. He said that they can stick together in the blood stream and create clots which can travel to my heart, lungs and throughout my body. He was talking about my disease but it all seemed like a blur to me. I became extremely frightened and ask him if I was going to die. He said I was a very lucky person that they had found the disease when they did and with treatment I could live a normal life span. Without treatment I would die of a stroke due to a blood clot. He also said that too many blood platelets can build up in the liver and the spleen, enlarging them both. He wrote out a prescription for Anagrelide and told me that he really wanted to put me on Hydrea (generic is Hydroxyurea) but he wanted to do a bone marrow biopsy first. My feelings at the time were that I was a walking time bomb.

    With prescription in hand I left the doctor’s office and went to my neighborhood pharmacy where I was told that they did not have the medicine in stock. They sent me to another pharmacy that was located about 15 miles down the road in another town. It was turning dark by now and when I got into my car with the medicine, I downed it with some bottled water I had in the car. I sat there for a while and thought what in the world is going on. This was all just plain crazy! Then I called my husband.

    Since then, my husband has accompanied me to every appointment that I have had with the oncologist.

    After, starting the medication, I felt nauseous and felt as if I was going to faint all the time. I am a Realtor and sometimes when I would be with a customer, I would have to excuse myself to sit down. It seemed like it was like that much of the time. After the doctor started me on Hydrea, I felt somewhat better. Then when my platelets were not coming down fast enough, he increased my medicine. When he increased my medication, I started feeling nauseous and light headed a lot. The medicine made me anemic and the doctor ordered iron shots for me. That helped some. Then my platelets went down and the doctor decreased my medicine to one pill a day. A few months later my platelets went back up again and so did my medicine. I have also had a body CAT scan to see how my liver and spleen look. When I was leaving my CAT scan appointment and walking to the car my teeth started chattering. This is NOT a symtom of Thrombocythemia. This was simply my nerves. I could not stop my teeth from chattering and I broke a tooth. As soon as I got home I had to call my dentist to make an appointment. I felt so drained. This was such an ordeal. I think my liver and my spleen are okay, but now I have a brand new cap on my tooth as a souvenir. Oh well!

    On my last doctor’s visit, 6/24/08 my platelets were down to 546. At this point I am presently taking 5 mg Hydrea one day and 10 mg the next day. I have adjusted very nicely and I have learned to drink as much water as I possibly can each day because that helps a lot with the nausea and the light headiness. I am looking forward to my next doctor’s visit because I am optimistically anticipating that my blood platelets will be down to at least 400. I do just about everything I want to do and I am enjoying my life. My faith in God has helped me get through this and I have a wonderful husband who I love and I know loves me. I also have a beautiful daughter that I adore. She keeps checking in with me all the time and comes over to see her Dad and me at least once a week. Life couldn’t be better.

    We need as much publicity on Essential Thrombocythemia as we can get. I believe people are dying everyday from this disease that was never diagnosed properly. The information is simply not out there. I am one of the very lucky ones that was diagnosed in time. A start is needed and I hope this Blog will be the start.

    Please write to me and let me know how you are doing with your Thrombocythemia. I would love to hear from you and I am sure others would love to hear from you too.

    Thrombocythemia Search

    Posted in Kanetta's Early Symtoms | 36 Comments »
    Tagged With:

    36 Responses to “Thrombocythemia – a Rare Blood Disorder”

    1. comment number 1 by: James
      August 23rd, 2008 at 6:59 pm

      Great stuff Kanetta. I really enjoy seeing your thought on the net.

    2. comment number 2 by: Blake
      November 4th, 2008 at 7:31 pm

      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.

    3. comment number 3 by: wendy chai
      November 12th, 2008 at 10:08 pm

      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.

    4. comment number 4 by: Dorothy
      November 20th, 2008 at 4:45 pm

      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.

    5. comment number 5 by: Karen
      March 20th, 2009 at 10:27 am

      Hi Kanetta,
      I too have thrombocytosis, and have had it since 1992 or before. 1992 is when they found it. I have been on Hydrea for approx. 10+ years and have just changed to Anagrlide this week. I like the Hydrea better as I am experiencing severe headaches with the Anagrlide. I am hoping they will go away. The only problem I ever had is fatique. I am always tired but then I am 61 years old also so who knows. My doctor changed my mediicine because I had been on Hydrea so long and have had some issues with anemia lately. I do not want to develope AML if I can keep from it so I told him I would try and change from the Hydrea. Other than that I have had a very normal life, and not let this disease get me down. Mine too was found with just a routine blood test (803,000) in the beginning and going up to 2 million without any episodes and before being treated. I keep hoping it will just disappear as it came. I see the Dr. every 3 months and the lab girls for bloold work every month. I just try to stay positive and pray that all will stay the same.

    6. comment number 6 by: Wendy Parker
      March 21st, 2009 at 7:56 am

      Dear Kanetta, first, thanks for starting the blog. I also have ET and it is comforting to hear of other peoples experiences with diagnosis and treatment. I too found it hard to find any information and had never heard of ET! Like yourself, I was worried and bewildered at first. I was having occasional TIA’s where my L hand would go numb. I also suffered chronic heartburn, and further on down the track I had the burning hands and soles of my feet and cool water gave no relief. This last symptom , along with a significant TIA where my whole arm and back went numb, sent me running to my doctor!!! I was finally diagnosed in 02 and started on hydroxyurea. Shortly after on one of my monthly visits to my specialist I told him that I was getting some bouts of angina when mowing the lawn. This rang alarm bells and he increased the Hydroxyurea and arranged for me to see a heart specialist. OH BOY!!! I had gone from a healthy happy 50 year old who had never even broken a bone to someone who was falling to pieces fast! The increased medication flattened me and I was in bed most of the day shaking violently and unable to get warm. I felt like I’d had chemotherapy. Soon after I was started on Inerferon but I had an awful shock when told that I would have to learn to self-inject. My husband was now on a pension so, thankfully, I could get the Interferon on the PBS otherwise it would have been too expensive. After a shaky start, I mastered the jabs and now its nothing to me. I am on 3mill IU twice per week and holding steady. I was at one time on 4 per week and had very noticable reactions. My face was swollen, I stumbled sometimes and I don’t think my brain was too sharp. I also lost half my hair. Anyway, this routine is now part of my life and I cope. Sometimes I feel pretty bad but a lot of the time I feel really good. There are worse things to get!!! But I do wonder how I got this. My specialist, who I see every 3 months now, says that it is believed to be an autoimmune disease. Oh, I got my hair back and the strange symptoms disappeared when my platelets started to reduce. I stay positive and enjoy every day on this beautiful earth.

    7. comment number 7 by: Kristy
      April 21st, 2009 at 1:59 pm

      Hi Kanetta,
      Thanks so much for your blog. I was diagnosed with ET about 4.5 years ago when I was 27. I was wondering if you knew (or anyone reading this) anyone that has ET and got pregnant. There isn’t much information on this disease, and I’m curious to talk with someone who experienced pregnancy/child birth with this condition. If anyone can help, my email is kmmcelveen@aim.com. Thanks and God Bless.

    8. comment number 8 by: Lisa
      May 12th, 2009 at 1:12 pm

      Hello,
      I was diagnosed with Thrombocytosis about 4 years ago, but my doctor never put me on medication. I went to see a hematologist and he said that he thinks the reason my platelets are so high is because I don’t have a spleen (I was born without one). I had stomach surgery 5 years ago and through ultrasounds and surgery they found out that I didn’t have a spleen, and that’s what’s causing the high platelets . My platelet count is not quite as high as some of you on here- mine has been as high as 700 at one point but it has gone down- It is now at 550. I wish all of you luck with everything. God Bless and Thanks for all the helpful info on here!

    9. comment number 9 by: Cassandra
      May 23rd, 2009 at 8:51 pm

      Hello Kanetta,
      Kudos to you for putting this blog together!
      I was diagnosed when I was 28 after suffering an ovarian cyst hemorrhage (I believe this qualifies as a bleeding episode) with a platelet count of 3.3 million. I probably had ET at least 4 yrs before my diagnosis when I had a routine blood test for what was thought to be giardia. I was put on hydrea and tolerated it fairly well. Not understanding the seriousness of ET in my younger years, I did not stay on my meds consistently and did have bruising and bleeding after minor surgeries, and clots in my menses. 10 yrs ago or so, I was switched to Agrylin. Glad to say I can tolerate the minor heart palpitations. Both meds took some time for my body to adjust to. As for symptoms from the ET, I did not know itching, fatigue, muscle and joint pain, tingling in hands and feet, headaches, etc. were involved. I thankfully have not suffered much of those, but I have always been erratic in terms of energy levels and overall sense of well-being. I have heard ET can elevate one’s histamine levels, which I now wonder may have played a part in a nasty bout of dermatitis that peaked 2 yrs ago. I mean it was BAD! No dermatologist or doc helped to clear it up. One did advise me to use nothing but warm water on my face and that started my healing. I did not take the antibiotics nor steroid cream he prescribed, but researched about the ingredients in all my body care products. I stopped using nearly everything due to the chemicals and petroleum based ingredients and now most of what I use on my body can be found in my kitchen! It’s been 2 yrs since I abandoned those products and to my surprise, a whole host of symptoms have begun to clear up. I did not know I’d gotten so toxic over the yrs due to what I was using on my body. I’m watching my health come back and I had thought the fatigue, joint aches, insomnia, and more, was most likely due to the ET! I am so glad I was wrong. I’m still trying to find a good hema/oncologist in my area (near San Francisco). I’ve seen nearly every one locally, but I’ve never been given the tests I’ve read should be given for ET. I hope some day to understand what my dermatitis was caused by.
      It seems everyone’s experience with ET is unique. I’m shocked I have not experienced more of the symptoms associated with ET, esp. when my count has climbed over 3million.
      I wish you (and everyone else that blogs in) good luck and health. Thanks again, Kanetta.

    10. comment number 10 by: Randy
      August 23rd, 2009 at 1:57 am

      Hello Kanetta
      I fell ill on my job in June of 1995. I was a 1st. Class truck driver and I hauled chemicals that are know to cause blood diseases. I had pain going from my feet straight up the left side of my body to my neck. I was on a interstate delivery and told my Sup. when I got back in town. There was no response to my injury complaint. I was called into the Managers office a month later and laid off after I trained someone else. I had started going to the doctor before they laid me off, so when they began to denie the injury my doctor confirmed I had a visit with him complaining of a job injury. My doctor discovered a Hernia while I complained about my whole left side. I was told it was my back causing the problem. I went on workmen’s comp. and my body pain got worse and worse. I had years of back injury treatment. The AME doctor recommended I have back surgery. I didn’t think so. I felt there was something else wrong all the time and the comp doctors reported to the court I was less than honest and faking the pain. They said it was the result of a back injury from 5 years earlier. I kept telling them this was something totally different from what I ever experience. I had pain in different areas of my whole body from the tip of my toes all the way up my neck. Feet, legs, hip, back, arms, and I even went to the emergency several times. Once I thought I was having a heart attack. I told all this to my comp doctors. Their recommendation to the court two years ago is I was less than honest, faking the level of pain and taking too much pain killers. The AME told me he would see I didn’t get nothing out of my case. Two years after my case was heard , my family doctor who followed and believed me all the time had noticed my platelet count was going up over the years. So was my blood pressure. During my last annual visit my Doc discovered my platelet count was over 1.4 mil. A appointment was set for the hematologist. I had blood work done over several weeks. Meanwhile the doctor asked me how I been feeling. I told him of all my experiences over the years except one I didn’t think had anything to do with this. I would get rash on my back when taking hot showers. This along with all my problems I had been having were from ET. The doctor told me after a final blood work when he tested for the JAC2 bone marrow mutation and I came up positive for it. He said that was what put the E in ET. By now depression had become a part of my injury. No one believed I was ill. The Comp. doctors and my Attorney who went along with them treated me like trash. I’m a grown man of 55-years old. I fell sick at 40. I cried on these doctors with real tears. They wrote in their report ” He puts on a big show with tears and all” I never settled. I went to court and came out with nothing. All of the issues I had and told the comp historian were all systems of ET the Hematologist said. They were looking in the wrong places. They were saying I was faking a Ortho issue. I was begging every way I knew for help. It turned out to be a Blood issue. My family doctor would tell me “I will keep you alive. I will find out what’s the problem ” GOD BLESS HIS SOUL. He did. I have so many feelings going on inside me. I don’t know how I feel anymore. I finally found out what’s wrong and that’s a Dark relief, for lack of a better statement at the moment. I hauled blood disorder causing chemicals and i’m almost sure this is due to the exposure of these chemicals. These chemicals are around us. They are industrial chemicals and i’m sure people get exposed and don’t know. I have read that one inhalation of some of these chemicals can do serious damage to human cells.
      Last but not least. I noticed at a Wedding Reception, after drinking a couple of beers the discomfort I always have in my side disappears so I decided to look into it. Please read the studies of what a beer or glass of wine can do for you.

      Bless All of You Out There.

    11. comment number 11 by: Susan
      September 18th, 2009 at 7:20 pm

      Hello Kanetta,

      I am writing this while I await delivery of Hyrea. This will be my first time using the medication. I was diagnosed 13 years ago when I was 50, after seeing my doctor because of large bruises all over my body. About a year before that, I experienced my first “occular” migraine while driving and, of course, thought I was going blind. I don’t call them “silent” migraines because I experience intensely painful headaches with the visual disturbances. I have been taking imitrex for many years and that helps with the pain of the migraines. I was advised to take a daily dose of aspirin and have been less than compliant. Over the years, I have suffered many medical emergencies, but none seemed related to the disease. From what I have read, this is something that you are born with or something that results from an infection. I think back to when I was a child, and no matter what “childhood” disease was around, when I got it I always had complications. My parents would always remark how I could never get anything “simply”. When I was 11, I had the “black measles” where the measles actually hemorrhage under the skin. Was this the start of the disease? or the manifestation of the already existing disease? I don’t think I will ever have the answer. During my menstrual cycles as a young girl I could not even go out of the house. After I was diagnosed, I figured that it was the result of working with chemicals for many years as an analytical bench chemist – but now I am not so sure.

      This most recent incident started about 5 months ago. I was under stress, after losing my elderly sister. I had moved away from the family a year before that and it was a strain for me. I was by her side for a month and then came back home. Two days after that I moved and 2 months after that I lost my job. So when the episodes of hives started, I figured that it must be stress. Well they got to such a point that I would scratch until my whole body was bleeding from the trunk to the arms to the legs to the buttocks. I couldn’t go out because my days were spent in a mumu with caladryl lotion from head to toe. And I never slept. So I made an appointment with an allergist and he prescribed a combination of meds that really did the trick. He did a routine blood test to see what I might be allergic to and although my immunoglobulin was double the normal range, I had no reaction to the typical food triggers. But my platelet count was about 750 and my liver enzymes were elevated. My kidney function was also out of range at less than 60. I noticed that pretty much every day by now I was experiencing the pain in the fingers and toes and my ears and was having headaches episodes at least once daily. And during the night I would wake up with terrible cramps in my feet. I also could barely drag myself out of bed and had no desire to even get dressed I was so exhausted (but blamed it on the meds for the hives). I made an appointment with a hematologist and 2 weeks later my count was over 800. So the doc put me on Hyrea and now I am back to the start of my story.

      I am very confident that all will be fine. (After all I have gone through in my life, I think I can handle the nausea – if it even happens. Anyway, I hope I have no side effets). In fact, I have my 3rd appointment next week at a local company and I am pretty confident that I will receive a job offer. I really think the meds will make a great difference in how I feel and I am looking forward to continuing to grow my career!

    12. comment number 12 by: Susan
      October 4th, 2009 at 8:02 am

      Hello again,

      Well, it has been 2-1/2 weeks since I started Hyrea. After the first weeks on 500 mg daily, my count continued to increase, so I was put on 1000mg daily. I will be tested after 2 weeks to see how this is working. Other than bouts of total exhaustion, I am tolerating this well. Does anyone else have alternate bouts of exhaustion for a few days and then feels fine? It is the strangest thing.

      Oh, BTW, I did not get the job, but I believe this time for me is to get well. So there is someone watching out for me up there.

      Bless you all and continue on your road to good health.

    13. comment number 13 by: Melissa
      October 5th, 2009 at 9:41 pm

      Thank you for posting your story. It brought tears to my eyes — I have tried to be so strong telling myself that this will go away, but I know in my heart of hearts its here to stay. I am seeing a homeopathic doctor, a acupuncturist/herbalist, a nutritionist who prescribes special supplements and praying for the best. Good luck to you!

    14. comment number 14 by: Susan W.
      October 7th, 2009 at 1:32 pm

      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.

    15. comment number 15 by: Susan
      October 7th, 2009 at 8:47 pm

      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.

    16. comment number 16 by: Susan W.
      October 8th, 2009 at 5:06 pm

      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

    17. comment number 17 by: Susan
      October 8th, 2009 at 6:07 pm

      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.

    18. comment number 18 by: Susan W.
      October 9th, 2009 at 12:02 pm

      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

    19. comment number 19 by: Jen
      February 11th, 2010 at 3:01 am

      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

    20. comment number 20 by: kanettac
      February 13th, 2010 at 11:25 am

      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

    21. comment number 21 by: Susan
      February 17th, 2010 at 4:22 pm

      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

    22. comment number 22 by: Susan
      May 1st, 2010 at 2:36 pm

      After using 1000mg of hydrea each day for the past year, my platlet count has finally decreased to 354,000; however, my white blood count continues to drop. My oncologist and I are both pleased that the meds are finally working. I just hope that you and your followers are doing well.

      Kanetta, I also viewed your words on grayworks.

      Susan W.

    23. comment number 23 by: Dennis L.
      May 6th, 2010 at 10:19 am

      Hello Kanetta,

      I found out that I possibly have ET entirely by accident. I was having chest pain and while on my way to work I decided to head to the ER instead of work.

      They did the usual stuff, EKG, chest x-ray and all was fine. The problem was with my blood work. The Dr. said that my platelet count was in the 750 range. A range of concern. He did say that even the chest pain could cause it doe to the anxiety involved.

      He notified my PCP and within a few days I was in the doctor’s office and explained what the next step will be. He recommended seeing a Hematologist and just yesterday He decided that since it’s been a couple weeks to do another CBC. Sure enough It had risen to 962. I now have an appointment for bone marrow aspiration.

      Thank you for your blog I was looking for other’s who had this disease too and after reading a few of the threads I feel better that this is a treatable disease.

      I will keep you posted.

    24. comment number 24 by: Jocelyn
      May 6th, 2010 at 5:18 pm

      Hi – well I just found out last night that I have ET…wow. I guess it’s sinking in now … as I sit here at work wondering how I can possibly keep calm until 5:30 so I can go home and cry. I’m supposed to take asprin every day. But the doc said if I want to start the Hydrox…(sp) I could. I am going to have to read more about that – I’m still processing this whole thing! I sure feel like I’m going to have a panic attack just thinking about this!

      It’s all happened so fast – I found out after 3 months of “carpal tunnel – which did not improve at all. My entire arms and muscles began to burn like there was fire in my veins.

      I finally got the workers comp “doctors” to believe me – that something felt wrong and let me see my own doctor. So I suppose it was a blessing that I had the carpal tunnel, or I wouldn’t have had the blood test.

      I know I am fortunate – that this was found, and that there are much worse things that could happen and much more horrible diseases, so I’m going to keep positive. I am very grateful to find this information. It’s the only thing that is keeping me calm!

      I’m 40 and have epilepsy – mostly partial seizures. So did many of the women in my mom’s family. And auras and migraines. I wonder if its all related when I read some of the posts of migraines and auras. I heard that my mom had to have blood drawn now and then, but I have yet to get her medical records to see if she had this too.

      WOW! Life is just so full of surprises :-)

      I will most certainly be checking your blog. It is so reassuring.

    25. comment number 25 by: Susan
      May 9th, 2010 at 10:23 am

      Dennis, I too was encourage when I found Kanetta’s blog. I have received valuable & encouraging information each time I googled “Mayo Clinic – Essential Thrombocythemia”. I especially like Dr. Ruben Mesa’s message. Check it out! Susan

    26. comment number 26 by: Dennis L.
      May 14th, 2010 at 1:22 pm

      Hi,
      I got the results from my bone marrow aspiration today. It does say I have ET. But since my platelet count is below 2 million I don’t need to take any drugs . My count as of now is 862. I hope and pray it stays below that figure. Low dose aspirin is recommended to keep everything flowing properly. My next appt. is in August.

      Dennis

    27. comment number 27 by: Dennis L.
      May 17th, 2010 at 7:10 pm

      I am wondering if anyone out there knows if ET is actually a form of cancer (similar to leukemic types)? The fact that this disease is treated by oncologists seems to make me think so.

    28. comment number 28 by: Leigh Mendoza
      June 8th, 2010 at 9:48 pm

      Hi Dennis, I’ts funny that you say that, i’ve been on Hydrea for about 4 yrs. now and my platetet count was just over a million. 1500 mils aday. I wonder why that is?

    29. comment number 29 by: Susan
      June 16th, 2010 at 10:11 am

      Disappointing oncologist visit for me yesterday … my count had jumped 115,000 points. Even though I’m taking 1,000 mg. hydrea/daily, my counts continue to yo-yo. Thank goodness my doctor is always upbeat …

    30. comment number 30 by: Dennis L.
      July 11th, 2010 at 11:13 am

      Went to the hospital on Friday for shortness of breath and they did some blood tests among other tests. My blood platelets were down to 700k. The doctor says that platelets go up and down all the time but to see that it is not going higher makes me feel better.

    31. comment number 31 by: Susan
      July 13th, 2010 at 2:30 pm

      Dennis,

      The shortness of breath could be a side effect of the medication you are taking. When I was first diagnosed with ET, I was directed to take .5mg of Anagrelide, 4 times each day. It caused me to struggle for every breath, which was very alarming. Even after reducing the med to 3 times a day, I continued to experience shortness of breath. When the Anagrelide failed to control my platlet count, I was switched to 500mg of Hydrea, 2 times daily. I did have some side effects from the Hydrea, but my shortness of breath ended! I hope you find comfort in knowing you are not alone with this “strange” medical condition …

      Susan in NC

    32. comment number 32 by: Victoria, London
      July 14th, 2010 at 9:54 am

      So helpful to read everything on this page. I was diagnosed about a year ago with counts ranging between 600 and 1250 and currently at 900. I have been coping ok until recent months apart from tiredness which is seriously starting to affect me. I am 28 and have a very intensive job. Can anyone help me understand, will I be well enough to carry on working 10 hour days? I have been in bed for the last five days with fatigue, dizziness, numbness in arms and vision problems and am thinking perhaps I need to somehow adjust my job. How has ET affected anyone’s job day to day? Many thanks for your help

    33. comment number 33 by: Dorothy
      July 27th, 2010 at 5:16 am

      Victoria – Since being diagnosed nearly 2 years ago when I was 47, I’ve had to accept that I’m not able to do the things to the extent I’ve was able to do in the past. I still walk/climb mountains but for instance I don’t play Badminton any more but I more or less lead a normal life. Sometimes, however, ‘pushing the boat out’ can lead to a detrimental effect of fatigue/tiredness and for me, a more than normal number of migraines for some weeks after! Same goes for work and I’ve ended up working from home which has helped me pull in the reins a little. It is so easy get to involved with work things to the point that one has no more energy left for anything else. I’m computer based so it works for me and the company I work for but may not for you depending what you do. I can only suggest to get some quality of life you need to consider altering something to help you live a normal life within the restrictions that the condition and medication seems to cause. Eat lots of good healthy immune system boosting food. Hope this helps.

    34. comment number 34 by: Angela
      August 16th, 2010 at 7:09 pm

      Hello,

      Dennis — it is technically a form of cancer because cell are mutating in a non-conventional way but it’s not a the type of cancer that most people associate dying with. It can progress into acute leukemia over time, which is very serious, but it is also very treatable with a high survival rate.

      I’m 27 and I’ve just been diagnosed with ET although I’ve probably had it for at least 3 years — looking at past lab results.. I’ve been put on baby aspirin because my count isn’t at a critical place yet. I was told that I had a MPD (myeloproliferative disorder) but they couldn’t tell which one until they got the results of my bone marrow biopsy — which took two weeks. I think the two weeks I spent worrying about what I had were the worst of my life…

      ET isn’t a positive thing, but Idiopathic myelofibrosis is ten times worse… and it’s in the same group of disorders.

      Try to keep on the sunny-side of life.

    35. comment number 35 by: Laura
      September 6th, 2010 at 11:13 pm

      I was searching ET and came across this page and have a glimmer of hope. I haven’t been technically diagnosed with ET yet, but my oncologist says that the chances are highly likely. I had my little girl in February and in May I started having nosebleeds and sporadic bruises all over my body. At first I just thought I was anemic and started taking iron again, but when it didn’t get better but got worse, I went to a doctor. My platelet count initially was 498, then it went up less than a month’s span to around 527. My PCP referred me to oncology, and after hearing my symptoms, the first thing my oncologist said was “ET”. Although I know the cause is not known, blood disorders run rampant thru my family (S protein deficiency, Leukemia, Chronic Anemia, Low-platelets). I am currently awaiting my next appointment to discuss my blood results. My oncologist said pending the results, I may have to have a bone marrow aspiration and biopsy. I’ve been stressed out to the maximum, worrying about this. I’m only 23, with a new baby, and a husband deployed and to think that I have a chronic disease just worries me. I need to do more research on ET, but is hard as little is out there. I’m trying to stay positive and if I have the definitive diagnosis, realize that it’s not a death sentence.

    36. comment number 36 by: kanettac
      September 8th, 2010 at 9:20 am

      Dear Laura, please, please try not to worry about all this. I believe stress plays a part in this. Just listen to what your doctor tells you to do. Most Et patients have numbers much higher than you. When I was diagnosed mine were over a million. I was diagnosed with ET about 5 years ago and today, I don’t really think about it. The bone marrow test really isn’t that bad. You will be numbed up for it. My husband was in the room and held my hand when I had mine. You have a new baby which makes coping a little more difficult. Take care, Kanetta

    Trackbacks

    Leave a Reply

    Name

    Mail (never published)

    Website