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    • 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.

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    4 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.

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