Essential Thrombocytosis

Hello
I have been diagnosed with Essential Thrombocytosis. My Hemotologist did not have a brochure on it and we talked about me going on line. I think I went into a trance when he gave me the diagnosis..Is Essential Thrombocytosis the same as Essential Thrombocythenia? After reviewing the articles on-line I have many questions. One article that I read stated that Essential thrombocythemia ia a chronic form of leukemia, is this true? I am 52, 5'1, and weigh 119 lbs., have high blood pressure, high collesterol, and ET adds more risk for me to have a stroke or heart attack. Sorry if this seems disjointed but, that is how I am feeling now. Any comments would be appreciated, thank you

I have it too. on hydrea and aspirin and have a 18 month old // lots of fatigue... I have to take aspirin too... diagnosed a month ago.. feeling better.. I think it is genetic or something.. possibly... totally freaked out ... but it is manageable.. and I am praying that it doesnt progress into anything.. I am 45 years old.

linda

I too have been diagnosed with ET, Sept of 2001, I started Anagrelide treatments for 4 years and it was a very difficult med to be on, I have just recently switched to hydrea, much easier on the body and immediately lowers the platelets, but it also affects the red blood count as well...I have had some procrit treatments to boost my red blood counts, that has helped...my question to anyone is this....Has anyone had this for more than 10 years??? I see articles that give a survival rate of 10 to 15 years...why? Are other factors involved in this number? I do alot of research and have seen 5 different doctors...I have a consulting doctor..a hemotoligist from Dana Farber in Boston. He consults with my doctor here on Cape Cod. Would love to hear from someone...anyone.
Pam
I am 50, 5'3" 110lbs....2 children, 20 and 17 and I workout daily...keep those blood clots away?

Do Argylin,there is little/no risk of leukemia. Search on google for: essential thrombocytosis treatments. There are several good articles there, along with cause, treatments, symptoms, etc.

My daughter passed away on April 13, just shy of her 32nd birthday. She had ET. ET is caused by Factor V mutation of the DNA. She also had Factor 2 defiency. Leslie was diagnosed in July of '03 after her spleen was removed-it weighed 10.5 lbs. She spent a month in the hospital and had a bone marrow biopsy to diagnose and treat her deep vein thrombosis. She had solid clots in the hepatic and mesenteric veins. After 3 years the clots had been somewhat cannibalized, but blood flow was still very limited to her liver. ET effects all of the body. On April 1 she went to the emergency room with Reactive Arthritis, caused by a virus that she couldn't clear because of the spleen removal. While in the hospital, her INR was allowed to fall very low and perhaps she threw a clot to her liver. Her liver ruptured and required 3 emergency surgeries to stauch the bleeding. She was transfered to a teaching hospital, with reknown doctors. She required another surgery for her liver, which stopped the bleeding completely. However, she had received over 90 units of blood products and her body just couldn't take the stress. She developed kidney failure and threw a clot to her heart. She died of a heart attack. I know this is a long message, but PLEASE keep very dilligent track of your INR and platlet levels. The effects of ET may strike in an unusual way. Hematologists are very knowedable and skilled, but they see many patients and it is easy to fall through the cracks. Be your OWN best friend where it comes to your health. Read on the internet about the Factor V and Factor II and be tested. I cannot begin to express the heartache that losing my only child has caused. She leaves behind a husband and 2 beautiful children, 9 and 5, who will never feel their Moma's arms again.

Hello all. My father was diagnosed with ET in 1997. His toes turned black with lack of circulation. He went into the local ER. They first came back and told him he had cancer, but they could not find a tumor. Then the drs told him they needed to test for AIDS. After that, they told him he had leukemia. After 6 mos of testing, they finally told him he had ET.
Since then, he's had 7 heart attacks. He moved last summer from PA to TN for milder weather. It has worked a lot. His cells are leveling out a lot and he feels much better.
I turned 30 this year and have put off getting tested myself as it is genetic. I will be going in next week to start my testing as, now, I have several of the symptoms.

I do have a question for those of you with ET: Are any of you Italian or from Italian decent?

chttrbx:

I am so glad you are getting your testing done. Several of my family members have just gotten their results back-all negative. I don't know if my husband and I are just abberant genetic mutations or if this gene lurks elsewhere. Please keep me posted on how your father is doing, and on yourself. ET is such a rare disease, especially in young people. I wish you all the best.

CKaren

HI,

I was dianosed with ET at 18months old,this is very very rare. I am now 20 years old and have some how managed life without aggressive treatment. My platlet count ranges from 1.1 million to 2.2 million. Right now my spleen is enlarged to 19cm and I am on 81mg of asprin daily. The hardest part of this disorder is being so young. There are no tests or precedents set for adolecents with ET, so it has proved to be a waiting game. It's very discouraging because the doctors I find tend to use me as a "test" because I am so young and it is so rare. I'm writing this because it helps to let it out, but if there is anyone out there that is under 30 and has ET I would love to talk to you about your disorder.

Thank you,
Brittany

I was diagnosed in 2000 with this disorder. I was having TIA's and severe headaches. I was put on Agrylin to reduce my platelet counts. The Agrylin really affected my heart. I couldn't even walk up the steps without it racing and being out of breath. Understand that I am in really good shape physically, so I know it was the meds doing it to me. I am symptomatic, so as soon as my platelet levels go above 700, I experience headaches, fatigue, dizziness, etc. so I have to be on meds to control my platelet levels.

My doctor put me on hydrea and now I feel much better. No more headaches and heart palpations from the Agrilyn. He said that studies that say hydrea will lead to Leukemia are incorrect. The chances are very low this will happen. I have a few weird things that happen to me. I seem to have episodes of tingling and heat in my hands and feet and then I will start vomiting. It lasts about 3 hours, then I am fine. Have no idea what causes this. Low blood sugar? Stress? If anyone has experienced something like this, write back!

I lead a pretty normal life and as long as I go to the doc for regular check ups, and take my meds, I should live a long time (who wants to live to be 90 anyhow?? Not me!). Don't let all of the info on the internet scare you. Just take care of yourself, listen to your hemotologist and report anything unusual that happens to you.

I am half Italian, but I don't think heritage has anything to do with this disorder. It is just a fluke in our genetic makeup that chose us as a candidate. At least it is a disorder that we can control if diligent. Don't give up!! Our goal is to live a long happy life!!

My husband was diagnosed with ET and has been treated with Hydrea for almost 2 years. He recently had a new blood test performed called a JAK 2. I guess it is something new they are trying to link to the myeloproliferative disorder. Has anyone else been tested for this? My husband is 36 and has had symptoms for at least 5 years. He had a grandfather with PV, and a brother who is 10 years younger with symptoms. We have had all foru of our kids tested every 6 months for the past year and a half. Negative for everything but elevated LDH in all four kids....weird stuff!