CancerCompass message board discussion started by Ms. Marcie on 6/1/2005 http://www.cancercompass.com/message-board/message/all,2176,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 Ms. Marcie Wed, 01 Jun 2005 00:00:00 GMT 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 Hermosagal Sun, 02 Oct 2005 00:00:00 GMT 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? Pamelag Thu, 12 Jan 2006 00:00:00 GMT 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. John & Debbie Mon, 20 Feb 2006 00:00:00 GMT 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. Ckaren Mon, 08 May 2006 00:00:00 GMT 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 Sun, 28 May 2006 00:00:00 GMT 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 Ckaren Sun, 28 May 2006 00:00:00 GMT 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 Britt49143 Thu, 16 Nov 2006 00:00:00 GMT 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!! Crashed329 Sat, 18 Nov 2006 00:00:00 GMT 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! Mikesummer Fri, 29 Dec 2006 00:00:00 GMT Hello, I  know exactly how you feel. I  am only 33 and  I feel so alone and scared of this diease. I am hoping that My Et does not turn into anything else. Sweetsoul Wed, 10 Jan 2007 00:00:00 GMT dont be scared.. lot of new things going on in the horizon... just go to a real specialist ... like at mayo in minn.. etc..i am doing great .. on hydrea and aspirin.. take vitamins ... sleep good and the younger people do better.. may have probs after 60.... but you will live along time with the disorder and chance are it will not progress.. also are you jak2 tested yet   Hermosagal Wed, 10 Jan 2007 00:00:00 GMT Thank you so much! I really needed to hear that. I feel so alone. I am a single parent of a 13 year old son and I can't imagine not being here to see him grow up. I was first diagnosed with the disease in 2002 and my platelet count has been running from 600-750 range. I checked my records as far back as 1998 and according to my blood test my platelets have been high since then, so i have ordered my medical records from 1993 when I had my son early. He was premature. I had him at six months pregnant and he weighed 1lb and 6oz, so am thinking maybe I had early because I had this disorder then and didn't know it. From what I understand this disorder causes premature labor. So I shall see. I what to know how long I have actually had this disorder. Right now I have stop taking the agy medicine because it was causing too many symptoms, so right now am trying baby asprin to see what it will do, not to mention that I have high cholesterol. Anyway you mention a test a ja something test. What type of test is that and what will it determine. Thanks again for replying. I feel sad and alone and I feel like no one understands,not to mention the crying spells at work. I am so happy you responded back.. . Sweetsoul Wed, 10 Jan 2007 00:00:00 GMT It is rare that I see someone your age on here with the same disease my husband was diagnosed with at 34. He has been on Hydrea for almost two years and is doing well. His hem tells him all the time that he has seen people live into their 90's with this disorder. I won't lie to you, my husband does complain that he is tired everyday, but it helps him to have the family around him, as well as his job to go to everyday to keep his mind off things. I do all of the research for him and everything I read is very positive now...new things about ET are being discovered all the time. Hang in there and stay positive. The Jak 2 test you mentioned before is a blood test that they find some people with MPD to have. You can find lots of information on the MPD-Net digest. I just became a member of that sight and they answer several questions from thousands of patients just like you and my husband. Mikesummer Tue, 16 Jan 2007 00:00:00 GMT I was diagnosed with ET about 3yrs ago . I am on an asprin a day for now. My platelet count runs between 700 and 750 but my dr. has not put me on anything else. I stay tired all the time and seem to keep colds and sickness alot longer than most . To be honest I realy dont feel well most of the time and I am not real consistant with my appointments because at this point all they are doing is bloodwork. I had bloodwork this past friday but havent got the results back yet my primary dr does my bloodwork for me and then faxes the results to my oncol. I havent seen my oncol in a little less than a yr . I just found out that I am going to have to have surgury and have my galdbladder out. This is the second surgury that I have had since my diagnosis of ET. I dont know if I should be worried or not .   Suzieluwho Wed, 17 Jan 2007 00:00:00 GMT Thanks so much for your information. I really needed to hear that. Thanks for taking time to post some information on this board. Sweetsoul Thu, 18 Jan 2007 00:00:00 GMT To suzieluwho, I understand how you feel. I feel tired a lot and I get colds a lot too. Sometimes my feet burn. Right now am only taking asprin as well, because my count runs from 650-750 too. I also get dizzy after moving around too much like cleaning, for some reason when am cleaning, after a while i get dizzy and have to sit down. As far as your surgery is concern, I think you will be okay. just tell your doctor about the ET, I had foot surgery about 4 years ago and it went okay, so you should be okay. It's so nice to get support on this sight. Sweetsoul Thu, 18 Jan 2007 00:00:00 GMT Thanks for the reply . I have to see my oncol on mon so hopefully I will get my referal to get the surgury done . I just feel funny sometimes I dont know when to worry and not to worry . I dont want to feel like I am over reacting but in the same time I dont want to under react either . I did get my count back and it was 678 so compared to most it is still low . So I feel somewhat good about that . Thanks for all the replies .  To top it all off think I am getting a cold or something UGH! LOL Suzieluwho Fri, 19 Jan 2007 00:00:00 GMT SUZIELUWHO .... good luck with your surgery. I Believe you will be okay. please come back on line to let me know how your doing.. Sweetsoul Fri, 26 Jan 2007 00:00:00 GMT Hi there! yes, its the same as Essential Thrombocythemia, just another name for it.I have it too. diagnoised 10yrs ago when i was 30. Didn't have any symptoms at all, maybe just visual disturbances and headaches. Platelet count ranging from 600-1500 per microlitre of blood. Doctor never put me on any meds because she told me i was young and didn't need too. I had a baby 17months ago at 39 yrs old, and 3 weeks after she was born i got a clot (pulmonary embolisim) in my lung that nearly killed me. Was placed on heparin injections and warfarin for 6 months. Now got another clot in the lung again, but got it in time. VQ test next week and will have to go on warfarin and stay on it for good. Bugga, not happy about that at all. My daughter nearly died after birth too. She was very small for gestational age. Her BGL, (blood glucose level) went down to 0.4, which is death. Because of my ET it affected the condition of my placenta and didn't work well so my daughter didn't grow well inside me. She had many sezures when she was born and was in neonatal intensive care for 8 weeks. She is completely fine now, a normal liitle girl with no problems at all. Thank God! No more babys for me! Jodiemarie Sat, 10 Feb 2007 00:00:00 GMT Hi there. Just read your message about your premature birth.I was diagnoised 10 yrs ago with Et, platlet count ranging from 600-1000. I am now 40. I had a baby 16 months ago and my pregnancy was treated as normal? when it should have been treated as high risk!, anyway thats another story i'm taking up with my lawyers. My pregnancy seemed normal until i had my daughter, she was born at 38 weeks, weighed 6 pounds, which isn't that bad, but quiet small for our family. Usually the babys born in our family are around 8-9pounders. 48 hours after she was born her blood glocose levels went down to 0.4, which is death. She stopped breathing and the doctors had to resus her back to life. She had 15 sezures all in a few hours and was placed on antisezure meds and had to be put into an induced coma. She was in neonatal intensive care for 8 weeks as the doctors had to wait for her BGL to be normal. She came out of this completly normal and is a healthy normal little girl, thank god! While this was going on with my daughter, i got a pulmonary embolisim (clot in the lung) when she was 3 weeks old and still in neonatal intensive care. The clot in my lung nearly killed me and i was in intensive care for 5 days. Placed on warfarin for 6 months. Now i just got another clot in the lung. I will need a VQ test in a few days, i'm home, but scared! doctor advised i will need to stay on warfarin for good now, bugga! I believe my preganncy sould have been considered HIGH RISK. I should have been placed on heparin while pregnant, this would have helped with my placenta working properly and would have prevented any clots in me. I've read a high platlet count, while pregnant, can cause problems with the placenta. That's why my daughter came out with a BGL problem, she was starving inside me and because your milk doesn't come in till day 3 this made her even more hungry and it caused her BGL to drop to a very dangerous low level. In my oppinion,  The reason why miscarriage is high in patients with ET is because a high platlet count stops the fetus getting all the nutrients it needs. There is so much doctors need to learn about ET and its affects in pregnancy. I'm wondering how many women out there have the same story as mine?Would love to hear how it does with you.ThanksJodiemarie   Jodiemarie Sat, 10 Feb 2007 00:00:00 GMT Hello Pam!  My name is Jo. I was diagnosed 10 yrs ago with essential Thrombocythemia when i was 30, i'm now 40. Only symptoms i have had are the visual disturbances and headaches every now and again. My platlets have ranged from 600-1000. But my doctor never thought it nessesary, (is that how you spell it)? brain block :) to put me on any meds due to my young age. However, i had a baby 16 months ago and 3 weeks after i had my daughter i got a massive pulmonary embolisim (clot in the lung) that nearly killed me. My platlet count, at the time of the clot, was 850 per microlitres of blood, which is high. I was placed on heparin and warfarin for a period of 6 months. About a month ago i got another clot in the lung, but it was small, thank god!. I'm going to have another VQ scan on wed 14/2 to see whats going on in my lung. My doctor "Hemo", wants to place me on warfarin for good now, bugga, hate that, but what can you do. My hemo said we must manage by blood every couple of months now and the warfarin should keep clots from happening again. I asked if this will affect my life expectancy, she said, if we can keep these clots from accuring again, then i should live a normal life expectancy. It's bloody terrible having this ET, to me it's like a time bomb ready to go off, but my doctor puts me right by saying it's managable with medication. I don't want anything to happen to me because i could never leave my babies. I have a lot of faith in my doctor and plus i've studied heaps on the subject. I can live to 90 and so can you if its managed.God bless!! would love to hear from you!Take careJo Jodiemarie Sun, 11 Feb 2007 00:00:00 GMT Thanks Jo for the information about pregnancy, it really put my mind at ease about having another child. Sweetsoul Thu, 01 Mar 2007 00:00:00 GMT Does anyone have any more info on Pregnancy while having ET? Sweetsoul Wed, 28 Mar 2007 00:00:00 GMT  On 5/8/2006 Ckaren wrote: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. THank you so much for your message RE; your daughter... I am 35 almost 36yr old female with ET with Jak2 mutation- considering having a child... but don't know if I should even try....sounds scary...we def. all need to be praying for one another- thanks to everyone who posted :~0  Bjindc Sat, 05 May 2007 00:00:00 GMT hi i have the same disease as u guys.i have had it for 8 years now.the first year he put me on drug that did the same thing to my heart to plus it didnt work my plattlet count went up to 3000.and i have been on hydrea since then but now it seems to have stop working my count is up to 2000.he has told me  to increase my meds and now i am waiting for my next blood work to see what happens.also my daughter had blood work done the other day to test her for thyriod and they found that her platelet count is in the high 800s.so now she has to go see the same doctor as i do to see whatis causing hers. Vicky43 Mon, 04 Jun 2007 00:00:00 GMT I just turned 48 and about 4 years ago I had mesenteric veins that had clots and they had to do bypasses on them. I am on warfarin now for the last year. My platlets range from 500to600 the hemotaligests did a bone marrow byopsie and other tests and found that I have a factor v and protein c def. Now they did the jak2 test on me yesterday and it takes 2 weeks for it to come back . he is looking for disorders. It is scarry for me because they have know clue why my blood test also comes back abnormal.On 5/5/2007 Bjindc wrote: On 5/8/2006 Ckaren wrote: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. THank you so much for your message RE; your daughter... I am 35 almost 36yr old female with ET with Jak2 mutation- considering having a child... but don't know if I should even try....sounds scary...we def. all need to be praying for one another- thanks to everyone who posted :~0   aspire Wed, 26 Sep 2007 00:00:00 GMT Hello, I was diagnosed with Essential thrombocytosis in December of 2006- so it has only been about 9 months now...I thankfully did not have to go through the bone marrow biopsy because they said if I tested positive for Jak2 mutation that a biopsy is not necessary (I guess this is how they determine whether it is reactive or essential thrombo.)Anyway, I was pretty scared at first - even though I know it is benign, it is still something that I will always have to deal with they say. And after I read the message about the lady’s young daughter- it got me thinking even more…I am 36 and also wondering if I can have kids ever because of the ET and my age, I guess I am a big risk LI was a little concerned when I read what you wrote about the mesenteric veins … (I had to look it up online because I did not know what it was) is that caused directly by the ET?I would like to know what can be done to prevent that.I have been ok- pretty tired and crying at work. Not so bad since I started taking Zylene.I’ve been riding my bike in the evenings and that helps (probably more psychological than anything).I just wish I could not have to sit all day at my job. But maybe someday :~)Well, God bless and I hope and pray that you are doing better.B Bjindc Thu, 27 Sep 2007 00:00:00 GMT Yes -- partially. My grandfather who was of northern Italian decent died of Lukemia. He was in his late 80's when he passed and had been taking cumadin (sp?) which we believed thinned his blood too much. I am only a quarter Italian. NanaMelissa Mon, 12 Nov 2007 00:00:00 GMT Hi my name is Angel And I am 21 years old. I also have ET. I was diag. Only 4 months ago and I am taking hydrea.  At first I was very scared and all I did was cry and cry. My most fear in life is not been able to have my own kids oneday. I had my spleen and  gallbladder remove at the age of 11 years old. I am so thankfor That I am not the only one with ET. Be strong and have faith. We all are going to be Just Fine. Angel08 Sun, 07 Sep 2008 00:00:00 GMT