CancerCompass message board discussion started by Suzieluwho on 1/16/2006 http://www.cancercompass.com/message-board/message/all,4093,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personaly Suzieluwho Mon, 16 Jan 2006 00:00:00 GMT Hi, I also was diagnosed the same as you last year, my white cells and plateles both are on the hihg side but below 1million, therefore the only treatment I am on is Asprin,have decided not to take Hydroxyurea, may I suggest you do Yoga, espicaly breathing excerside it helps, and plenty of vegetable juices, and blance diet.my email is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if you wish to write to me. Tina05 Thu, 26 Jan 2006 00:00:00 GMT I am changing drs to one closer to where i live . The specialist told me that i will have to go on hydrea but i was not at the treatment level. I feel like if i am going to have to go on it i want to get it over with. I am honestly tired of all the tests lol . I know that another dr means more tests. But i needed to find someone that is closer the 2 hour drive one way was getting to me . Suzieluwho Fri, 27 Jan 2006 00:00:00 GMT hi Susan, try to read real stories on this site under essential thrombocythemia.... me too got this rare disease... but with the help of information and this site makes me hoping that we can have an answer or we can manage this kind of disease.... Attitude counts a lot! rocky2005 Rocky2005 Thu, 02 Feb 2006 00:00:00 GMT Hi - I am in the process of being diagnosed with ET and the doctor recommended hydroxyurea. I am wondering why you decided not to try it? I am definately interested in diet, yoga and other ways of dealing with this. Also, can you give me some ideas of what I need to ask about treatment? This is all so new, I just don't know where to start. thank you! Glad this message board is here! Barbara2m Sun, 12 Feb 2006 00:00:00 GMT Hi If you are a low risk patient maybe OK. I was diagnosed after simultaneous heart attack and stroke and so doing what you are doing is not an option- Hydroxycarbamide and aspirin for me, forever! Chusan Wed, 01 Mar 2006 00:00:00 GMT Hi I too have Thrombocytosis. I found out when I went into have my pre-op blood work done for breast cancer. We had to put off my surgery for a few weeks while I took hydrea/hydroxyurea 2000mg a day to get it down to 600. They did a bone marrow biopsy while I was knocked out the day of surgery but didn't get what they wanted from it (whatever that means). They want to do it again but I don't want to do it unless I HAVE to. I had radiation for 6 weeks and my ptl went down to 350 with that, plus the hydrea. Did you have a bone marrow biopsy? How painful was it? Are you on medication yet? For how long? Is this forever? Like you, I wish I knew more about this and who I should be seeing. I now go to my Oncologist should I be seeing a blood doctor? It is nice to know there are more of us out there. PS after requesting my blood work reports for the past 4 years I found that i have had this for at least that long untreated. My GP never said anyting to me. Maryann v Sun, 05 Mar 2006 00:00:00 GMT Maryann: I have spent hours on the internet and in various medical data bases researching ET. I think that probably your GP just isn't aware of ET and that's why he didn't catch it by your blood tests. From what I understand, the bone marrow will tell them where you are in the disease - also rule out other potential disease. I had mine two weeks ago and I tried to approach it without fear. I found out from a reference book at the library exactly how it is done. My sister told me to remember to breathe and that really helped. The doctor gave me something to calm my nerves and then something to numb the spot. I can honestly say that it didn't hurt at all because I wasn't fearful. There was bruising at the site and alittle sore the next day. But that being said - you have your cancer to deal with also. I hope you have a good support system that you can rely on and you aren't facing this alone. The hardest part of ET for me is my doctor can't really answer all my questions. Also there is no one I can talk to about it here as it is so rare. I plan to start a support group for the upstate area of South Carolina so that we can help each other. Are you a part of a breast cancer support group? Please keep posting here and let us know how you are doing. Barbara2m Tue, 07 Mar 2006 00:00:00 GMT hi maryanne, barbara was right regarding the support of people around you, specially when you will undergo bone marrow aspiration. Last August 2005, i had my bone marrow aspiration, my friends and sister were there to witness it.. i am calm at first, but while on the process, i had fear...for me its painful but according to my dr. as soon as he left the room, pain should be gone.. i stayed in the hospital overnight and go home the next day but according to my dr. it can be done in an outpatient cases. Once in for all you should undergo it so that you will not fear whatever diseases that strikes you.. and attitudes count a lots... now im on my 3rd remission... meaning my platelets got high after 3 weeks and i take hydrea once in every 2 days, to lower it down... just this month i am scheduled to have my annual physical check up to check again my systems, hopely have not been affected by hydrea... hoping for a good results. regards rocky Rocky2005 Mon, 13 Mar 2006 00:00:00 GMT Hi Barb, Thanks so much for the info. It looks like I have ET and hydrea is part of my life now. I am taking 2500mg a day now to get my numbers down. It makes me very tired not sleepy just wacked out but I push on. I am having problems with swelling in my legs and feet. I noticed it after breast surgery and got worse after flying to Arizona for a vacation. I am going for an ultra sound to make sure no clots are there and will get some elastic stockings for the future. Someone told me that I should not be flying with this conditon, have you heard anyting on this? I have no idea what I (we) should or should not be doing with this conditon do you? So many questions so little answears..........It is nice to know your not alone with this thanks again for all the info. Maryann v Wed, 15 Mar 2006 00:00:00 GMT My husband has also been diagnosed with ET. He underwent his bone marrow biopsy May 25, 2005 and started Agrylin the same day. He was having symptoms of stroke, and heart palpitations. He was changed to Hydrea when he couldn't handle the Agrylin. We are told he has some of the best Dr's on West Coast..VA docs. He takes Hydrea everyday 1000mg, one day, 1500mg the next. It seems to have stablized his platelet count, but he is extremly run down and tired. He frequently has diarrhea, and feels like he just can't get up. His mind is alert, but he can't open his eyes. He is having to take testosterone injections now too. We are taking a trip to the Mayo Clinic in Scottsdale in April. He is 35 and shows he has had it for 3 years+. His hair has thinned a little and he has lost about 20 lbs. with no effort. Mikesummer Wed, 15 Mar 2006 00:00:00 GMT So sorry to hear about your husband he is too young to have to deal with all this (you too). I think Mayo is the place to go for sure. I was just reading about it on line....very interesting indeed. You will be in good hands. Are there really so few of us out there? I will be very interested to hear what they tell you about all this please share with us if you feel you can. I think we have a problem for which there is little funding and or research. Good luck to you both and make sure to take care of yourself too. Maryann v Thu, 16 Mar 2006 00:00:00 GMT I agree - I think that ET is so rare, no money is out there to research it (no money to be made). Therefore, limited options for us at this point. I'd be interested to hear about Mayo's approach too so please let us know. I've heard so many stories about Agrylin side effects, I think I'm glad to be taking Hydroxyurea!! Hard to believe isn't it?? :) We all need to stay positive about this and do the best we can to keep our hope up. Its hard because there is literally no support/information out there. I can't tell you how much just having this bulletin board helps me! Its like my lifeline. Barbara Barbara2m Thu, 16 Mar 2006 00:00:00 GMT Hi I am a 20 year old female who was just diagnosed with ET two days ago. I have read some things about it but still not to sure what it's all about so if you could give me any information that i might need to know about how this is going to affect me that would be so helpful Thanks,Stephanie Cresponge Wed, 19 Jul 2006 00:00:00 GMT You did not mention how high your platelet count is. Mine are 831 right now and when it readhes 1 million I will be going on interferon. by choice. There is another link also on Cancer Compass and read all the messages http://www.cancercompass.com/message-board/message/all,719,0.htm It will give you a lot of information. Copy and paste the above link. What kind of a Dr are you going to? See an Oncologist (who is also a blood Doctor) if you can. I went for a second opinion and am glad. let us know your count and what you are thinking of doing. How did you find out/ Any symptoms? If you are having trouble with the above link let me know. his is not a death sentence but you will be well informed from the link I gave you. I just checked it out and a shorter version of it is All Thrombocythemia messages i am on there and barbara and genessa. We will answer your messages. God Bless....Maura Maura Thu, 20 Jul 2006 00:00:00 GMT My count right now is only 557.The only reason I found out that I had ET was because in march i was in the Hospital with what they thought was a gall bladder attack. Well they did x-rays,ct,and ultra sounds, and nothing was found there. Then I went to see my PCP and she sent me for a HIDA Scan,nothing showed up there either.By then it was almost May and my white blood cell count and platlette count was still high, so I was sent to a GI dr. There an endoscopy and colonoscopy were done where nothing showed up still. So by june I had gone back to see my PCP and was sent to the Oncology center by my house where there my dr thought maybe i should have a bone marrow biopsy done. Never again that was the worst. A few days like 2 after the biopsy was complete i couldn't get out of bed my back hurt so bad where they had gone in. so they put me on some steriods for a week and 3 days ago i went back and the dr told me I had ET. SO that is basicly where i stand right now. Cresponge Thu, 20 Jul 2006 00:00:00 GMT Stephanie- well, your counts are still pretty low. So unless you have some symptoms or indications you are in good shape for awhile. I would advise you to read as much as you can find - I guarantee you that if you do, you'll probably know more than 95% of the hematologists in the US. Its just so rare that they often don't see many patients with ET. So it pays to be informed. Maura found tons of different pages in her internet searches than the ones I found, so it helps to have others do searches too. What is interesting is that in the UK they seem to be way ahead of us in knowledge/treatment. There is a great bulletin board in the UK (I think they call it Primary Thrombicaema there - is that right Maura?) where I have gotten some good tips. For now, you need to digest all the info and let it sink in that this is something you'll be living with for the rest of your life. It is extremely rare for someone so young to be diagnosed. But it isn't a death sentence - you just have to learn how to manage it. Support from your family and others is real important too. Keep us posted on what you are told your treatment options are. Remember that the dr. can't answer all your questions but write them down and try and then throw them out here and all of us will try to help you too. take care! Barbara Barbara2m Thu, 20 Jul 2006 00:00:00 GMT Barb, Thanks for the info it really helps a lot. I know my dr said that what of the things I am at risk for are blood clots. I work in a hospital so we have people come in all the time to the ER where I work saying that they may have a blood clot, my question was that how do you know if you have a blood clot? Do you know what the signs are that you have blood clot because I know i have no idea what to look for. I mean of coarse I read about these things but if you have ever had one I would rather be talking to a real person about what to look for instead of just reading about it. You know? Stephanie Take Care Cresponge Fri, 21 Jul 2006 00:00:00 GMT Hi again! I really can't help you about blood clots. I know that people with ET are at a high risk of them because of the increased # of platelets. But the clots only happen if you allow your platelets to get too high. Yours are still low, so as long as you are monitored by a knowledgeable dr, you should be OK. I had nose bleeds alot for about 1 1/2 yrs but dr never took a CBC so ET wasn't in the picture until I moved and changed drs. There is another bulletin board on this Cancer Compass thing that has way more people posting - its Essential Thrombocythemia spelled out I think -- you might get answers there. Let me know if you can't find it and I'll post a link. Also, there's a really positive, uplifting board in UK. We tried to post a link but after a few days it was deleted by the administrator here. We can try again if you want. Barbara Barbara2m Mon, 24 Jul 2006 00:00:00 GMT Many of you have asked about my husbands trip to the Mayo clinic for Essential Thrombocythemia...well, we spent a lot of money, and they told him that they thought the medecine he is currently on was causing the side effects with his endocrine problems, and they wanted him to see an endocrinologist. I was very disappointed in the clinic in Scottsdale. I would say the service we received was very minimal. I left several messages for the Dr., and never received return phone calls, or a request for a follow up. They said since my husband had a positive JAK 2 test, they know his diagnosis of ET is correct and thought he should change his med to interferon. Since our visit to the Mayo Clinic, we have learned that he was tired because his Pituitary Gland was slowly dying and ceased production of all hormones. I almost lost my husband because of this. We are still seeing the VA Dr's in Las Vegas and are more pleased with them. They are searching for a link now to see if any other patients with ET have hypopituitary syndrome. If you do, please let me know. Mikesummer Wed, 02 Aug 2006 00:00:00 GMT I am 34 and have ET... I currently go to MD Anderson which is one of the greatest Cancer research hospitals in the world... I have been taking a baby aspirin a day for almost one year and now I am taking one Hydrea per day... I don't feel any different, but I m active and work out five days a week... I also have a rare disease called Anklosing spondilitis which affects your joints... For the most part I am doing great but both diseases bring me down from time to time.... ET and PV have a good life expectancy of about 15 years... However with the discover of Jak 2 targeted drugs are on the way within about 2 to 4 years... keep positive and don't think twice just live life to the fullest... Dams14 Wed, 09 Aug 2006 00:00:00 GMT look at jak 2 they have a trial drug already Dams14 Wed, 09 Aug 2006 00:00:00 GMT How disapointing for both of you. My ET is not as bad as your husbands at this point but I don't feel like anybody knows much about this. Or if they do it isn't much. I changed my primary care doctor and thought that she could monitor my PTL's and give me hydrea and was told that she could not do that only an oncologist could do that. I've also been told that Hydrea is a chemo drug...is this true? I have to do CBC every month now and see oncologist every three months. My PTL's are down to between 350 & 400 with 1500 hydrea one day and 2000 on the next. I am also on Arimidex as a breast cancer blocker which has side effects of clots but nobody seems concerned but me. Do we make too much of this or not enough? Glad you are out there to talk to. THANKS!! Maryann V Maryann v Thu, 10 Aug 2006 00:00:00 GMT My plt count is 557 but i was that that they couldn't put me on any meds for it until they were above 700. Do you know why this might be? And do you know any symtoms for blood clots so i know what to watch for? Stephanie Cresponge Thu, 10 Aug 2006 00:00:00 GMT I was diagnosed with ET when I was 20 years of age. My platlette count ranged from 750 to almonst 1 million. I started taking aglaride (not sure of the spelling) before it was even approved. I had bad side affects to the medicine, hart palpataitons. I came off of it. I am not 37 I have 2 children and have not been symtomatic as far as I know. My platelett count still stays around the 800-900 range. I do not really notice anything health wise. I workout at least 5 days a week lifting weights and running. I worry about having ET every now and then, but so far, so good. I have also read that pregnancy is hard to maintain having ET, cases of spontainous abortion ealry on in the pregnancy, I have had two children with no complications. Actually during both of my pregnancys, my platelett count was around 170's. So for me, I feel as I am doing well. Hope all of your out there with ET are also. Take care Beautymarked Tue, 31 Oct 2006 00:00:00 GMT Ive had thrombocythemia for the past 20 years. The first 16 years I only had to take baby aspirin. Regular aspirin is too strong and your body can only absorb 81 mg of it everyday. Then 5 years ago, my headaches took a turn for the worse and occured almost everyday. No wonder, my platelets were 2 million. I was placed on anagrelide (2 pills in the morning and 2 pills in the evening), and the headaches escalated. After two months my body got used to it and the headaches disappeared altogether. Now my counts are normal, but I have to take anagrelide (or agrilyn) the rest of my life. Your husband's thinning hair has nothing to do with the medication or his blood condition. But the medicine does have an effect on sex drives and may cause erectile disfunction. Thanks for letting me share. Fellow sufferer, RLantoria Ramonitolant Tue, 07 Nov 2006 00:00:00 GMT Hi there, I was diagnosed with ET 5 yrs ago, at that time my ptls were in the low 600,000 they have steadily increased to the highest I have been at now 951,000. All along I saw a hematologist every few months who said that when I reached 1 million, we would talk about medication. A couple weeks ago, I was having severe headaches and really blurred and double vision and dizziness. Went to my FP, who ordered blood work and an MRI for the same day, called next morning, said I had been having mini-strokes in 2 seperate areas of my brain. Sent me back to the hematologist, who reluctantly put me on Hydroxyurea 500 mg once daily just 6 days ago. I am to see him again in 2 weeks and a neurologist in January. I don't know yet what to think of all this and how serious to take it. My hematologist has been very non-chalant...thanks for listening and I pray for you all... Hapimama Sat, 18 Nov 2006 00:00:00 GMT Hey! I was just diginosed with Essential Thrombocythemia last Novmeber. They found out when I have to get an emergencey blood test done because my doctor thought I had diabetes Turns out I didn't, but they did find my platlets to be at 2.4 million, the lab tec thought they did something wrong. A week later I was tested again my a hematologist and she found my platlets to be at 3.3 million. Along with this I had an elevated white blood cell count.I was put on 2000mg of Hydroxyurea and asprin right away. Then had to wait a nerve wracking 2 months brofre my platlets were low enough to get a bone marrow test done to see if it was leukemia.  Luckly found it wasn't be it confirmed my ET. My levels were down to 478,000 in Janurary, but are now back up to 534,000. I'm also down to 1,500mg of Hydroxyurea.I'm feeling pretty good and have no symptoms yet. It's nice to know that there are people out there who have lived with this for quite sometime, and are doing great! Lifeguard Mon, 26 Feb 2007 00:00:00 GMT I am 37 and have been diagnosed with ET since Dec. 06.  I am on hydrea 1500-2000 mg aday.  My counts were as high as 700.  My question is does anyone have headaches and if so can you describe them.  My headaches started not long before i was diagnosed with ET.  My platelets have been decreasing but the headaches havent.  I have had to pull over while driving to wait until the pain has subsided some.  2curly Wed, 28 Feb 2007 00:00:00 GMT I had headaches when my Platlets were high last November. Now that they're on the rise again, they came back. My doctor says she doesn't think they're conected, but they really don't know that much about ET, so the best she could say was maybe.Then again, when I look back, I got the headaches when I was in a very stressful period at school. It's hard to say, but mine were never so bad as yours sound to be.    Lifeguard Fri, 02 Mar 2007 00:00:00 GMT  On 3/5/2006 Maryann v wrote:Hi I too have Thrombocytosis. I found out when I went into have my pre-op blood work done for breast cancer. We had to put off my surgery for a few weeks while I took hydrea/hydroxyurea 2000mg a day to get it down to 600. They did a bone marrow biopsy while I was knocked out the day of surgery but didn't get what they wanted from it (whatever that means). They want to do it again but I don't want to do it unless I HAVE to. I had radiation for 6 weeks and my ptl went down to 350 with that, plus the hydrea. Did you have a bone marrow biopsy? How painful was it? Are you on medication yet? For how long? Is this forever? Like you, I wish I knew more about this and who I should be seeing. I now go to my Oncologist should I be seeing a blood doctor? It is nice to know there are more of us out there. PS after requesting my blood work reports for the past 4 years I found that i have had this for at least that long untreated. My GP never said anyting to me.i have been on hydroxyurea for 4 years with little side effects. you can live till 90. but you have to get counts once or twice a mouth. red count goes down alittle. i take 500 to 10000 a day. pete from long island Tecman Sat, 26 May 2007 00:00:00 GMT I work with medical trials but I wouldn't recommend jumping into any for ET because they have no data for the long term effects. They are just recently finding that anagrelide used in younger patients for long periods of time are causing fibrosis of the bone marrow. I was just recently diagnosed and I am 32. I hope to live a long life. After talking at length with my doctor, I will probably never use anagrelide. I also heard that Interferon works great on the platelets, the only issue is that it can cause flu-like symtoms. Most of the time I would cheer for people to get into the drug trials, but learning more and more about ET it makes me a bit hesitant. My mother passed away after a 17 year battle with breast cancer. She was usually on the trial meds, they worked great for a while... until they didn't. Then it was on to the next one. The problem with the ET is that once you destroy the bone marrow, that's it or you need a transplant. I believe that they are not so easy to come by. Sorry to go off on a ramble, I'm tired and I have so much info and disappointment running through my mind. I'm sure you understand that it's frustrating when all the people around you don't understand. Anyways, that's just my two cents. I hope you have a great day. Take care. Kellya304 Sat, 09 Jun 2007 00:00:00 GMT I was diagnosed with ET Sept '06 and have been on 1000mg a day of hydroxy.  Overall doing well and blood counts are okay.  Recently though I've been extremely fatigued, my hips and shins ache, my nails have almost stopped growing and flake off.  I have a full time job, which is not stressful, and a wonderful boss.  However, it's becoming more difficult to function normally and I am forcing myself to keep going even though I don't feel up to it.  My dr says it not from how RBC or hemoglobin it may just be effects of the medication.  Just wondering if anyone else has these issues and or any tips on how to overcome?  Glad I finally found a place where others who have ET can share info.  Bruser Fri, 20 Jul 2007 00:00:00 GMT  On 1/16/2006 Suzieluwho wrote:i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personalyI am here..tell me about yourself and how this has come into your life..I have had ET for at least 18 years....  becca renee Mon, 23 Jul 2007 00:00:00 GMT  On 7/23/2007 becca renee wrote: On 1/16/2006 Suzieluwho wrote:i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personalyI am here..tell me about yourself and how this has come into your life..I have had ET for at least 18 years....  Hi my brother has essential thrombocytosis for approximately 18 years also. He just had his bone marrow tested and it came back with grade 4 scarring. He has been on Annagaralide  for all this time. I match him as a doner. I keep on looking for information on this topic. Does anyone have any information or no someone with E.T. who has gone through or is going through a bone marrrow transplant.   Thankyou ,                                                   Michelle  michelle 1963 Wed, 25 Jul 2007 00:00:00 GMT  On 7/25/2007 michelle 1963 wrote: On 7/23/2007 becca renee wrote: On 1/16/2006 Suzieluwho wrote:i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personalyI am here..tell me about yourself and how this has come into your life..I have had ET for at least 18 years....  Hi my brother has essential thrombocytosis for approximately 18 years also. He just had his bone marrow tested and it came back with grade 4 scarring. He has been on Annagaralide  for all this time. I match him as a doner. I keep on looking for information on this topic. Does anyone have any information or no someone with E.T. who has gone through or is going through a bone marrrow transplant.   Thankyou ,                                                   Michelle    michelle 1963 Wed, 25 Jul 2007 00:00:00 GMT Hi,I'am 34 yr old, who has been diagnosed as ET on Nov 2007. Now, my plt count range from 631,000-731,000. Recent rountine test, my hematologist will suggest me on hydrea if persist with few symtoms like spleen enlarge, the count increase, fatigue etc. Now, I'm on Cardiprin 100mg to prevent any clotting. Unfortunetely, i had developed some fixed drug erruption "black marks" over both of my feets. Could any friends highlight me what shall i consider or any method to lower or maintain the plt count. may you be well and happy. kee cckee Sun, 19 Aug 2007 00:00:00 GMT  On 7/20/2007 Bruser wrote:I was diagnosed with ET Sept '06 and have been on 1000mg a day of hydroxy.  Overall doing well and blood counts are okay.  Recently though I've been extremely fatigued, my hips and shins ache, my nails have almost stopped growing and flake off.  I have a full time job, which is not stressful, and a wonderful boss.  However, it's becoming more difficult to function normally and I am forcing myself to keep going even though I don't feel up to it.  My dr says it not from how RBC or hemoglobin it may just be effects of the medication.  Just wondering if anyone else has these issues and or any tips on how to overcome?  Glad I finally found a place where others who have ET can share info.  Hi I am new to this not sure how it all works  but I have just read your message and I have all your symptems, I also have pain in my legs and hips and my nails flake My doctor tells me that it has nothing to do with ET  also I am very tired all the time,  but I have been told that that is not an effect of et.   I find it very fustrating and sometimes feel that the doctors I have seen think that I am over reacting    I have been on Hydra and asprin since April 2006   I used to work full time but  a few months ago I had to stop as I was finding it difficult to keep up with working and trying to have  a life because I was so tired.  I have now learned to priorities what is important and do things that have to be done and enjoy the things I like doing.   I hope things improve for you soon aussiechick Thu, 30 Aug 2007 00:00:00 GMT I have been on hydroxyurea for 5 years. 500 6 days a week and 1000 1 day a week. was tired at first but got over it. my email is --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- things will get better after you level off. I keep my levels at 350 to 550, no need to keep them lower. My wife is a nurse and helps me a lot. Tecman Sat, 06 Oct 2007 00:00:00 GMT  On 8/30/2007 aussiechick wrote: On 7/20/2007 Bruser wrote:I was diagnosed with ET Sept '06 and have been on 1000mg a day of hydroxy.  Overall doing well and blood counts are okay.  Recently though I've been extremely fatigued, my hips and shins ache, my nails have almost stopped growing and flake off.  I have a full time job, which is not stressful, and a wonderful boss.  However, it's becoming more difficult to function normally and I am forcing myself to keep going even though I don't feel up to it.  My dr says it not from how RBC or hemoglobin it may just be effects of the medication.  Just wondering if anyone else has these issues and or any tips on how to overcome?  Glad I finally found a place where others who have ET can share info.  Hi I am new to this not sure how it all works  but I have just read your message and I have all your symptems, I also have pain in my legs and hips and my nails flake My doctor tells me that it has nothing to do with ET  also I am very tired all the time,  but I have been told that that is not an effect of et.   I find it very fustrating and sometimes feel that the doctors I have seen think that I am over reacting    I have been on Hydra and asprin since April 2006   I used to work full time but  a few months ago I had to stop as I was finding it difficult to keep up with working and trying to have  a life because I was so tired.  I have now learned to priorities what is important and do things that have to be done and enjoy the things I like doing.   I hope things improve for you soonThe bunch up on the mussles and cause pain but an apserin will help.   Tecman Sat, 06 Oct 2007 00:00:00 GMT  On 1/16/2006 Suzieluwho wrote:i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personalyhi Suziewho:I'm writing you from Canada, with around 6 years (known) of dealing with ET. I learned about my condition with a bang: I was teaching ESL in Japan when I got a clot in my heart, resulting in heart attack + transplant. I now take anti-rejection + Hydroxyurea + Aspirin. I've had more than one disagreement/complaint to my hematologist about side affects of HDX - against their advice I often skip the HDX but am really diligent about taking my aspirin. Like Rocky, I agree that "+" attitude is really important, as well as Nutrition and exercise. I was finally able to start playing (ice)hockey last year (I was hospitalized 5.5 months in 2001...muscle atrophy...) - and being able to exercise/participate in something that reinforces for awhile a sense of "normalcy" has been a big help.    Bullwinkle Mon, 24 Dec 2007 00:00:00 GMT Hello.  I am a male and I live in Canada (near Montreal) and I am 45 years old.  I was diagnosed with ET about a month ago.  The way they caught it is I am also diabetic and i go for blood work every now and then.  they noticed in 2005 tha my platelets were at 500,000 then last October 06, i went for more blood work and my platelets were at 907,000 so they ordered more blood work in January of 08 and they had gone up to 949,000.  I can tell you i was pretty scared at first.  Every time I checked on the net about blood platelets they mention lukemia.  My uncle died of lukemia.  So they ordered a bone marrow biopsy and aspiration.  I can say that the freezing hurt like hell but the biopsy itself i didnt feel a thing.  BUt that was about a month ago and i find that now i get like bad shocks in the area where they did the biopsy.  He said when my blood passes the million mark then he will prescribe medication.  I amdoing my best to eat better and im trying to eat organic and i ahve started taking acai juice hopeing it will help to regulate or lower my platelets.  I am still a little wary and nervous about this disease.  On the other sites they say the morbidity rate is about ten years....God i hope not.  My diabetes were very out of control and i have been very good lately and it is better controled now.  My dr told me to try not to worry about ET, he said my diabetes will probably kill me faster than the ET will.  I have blood work to do for the next 2 years...every 3 months .  I have just started getting the nerve up to look up ET on the net.  when I asked my dr if i had cancer he said "i have to say yes it is a form of cancer" which threw me for a loop.  Although the news of having ET is better than lukemia i still find myself getting depressed.   Im only 45...will i see 50..or 60?  time will tell.  Now is sit around wondering if im going to have a stroke or heart attack... I have to stop worrying about this disease and try to live with it. robertb1962 Thu, 13 Mar 2008 00:00:00 GMT Hi Robertb,  I don't think you should get too excited about what your doctor said. Most patients with ET are elderly, I think you still have some time before you are considered that. I'm 33 and was diagnosed with ET over a year ago and my numbers have been fluctuating from 800,000 to 1.2 mil. My hematologist is great and very knowledgeable. He has me on Hydrea to keep things in check. Basically, the most severe problems that you could get if your platelets stay high for too long would be bleeding problems such as clots or not clotting at all due to malfunctioning platelets. As far as all the research I've done says, there is not a whole not to be done to change the outcome. And yes, technically, it is a blood cancer but not in the way that the word cancer is use usually. It just means that the cells are not working correctly but most of the side effects that you are going to get with this disease is going to be from whatever medication your doctor puts you on. Just be sure to keep an eye out for any symptoms that could possibly be a blood clot. If you want some more info, go to the Mayo Clinic website and just type in Essential and it should come up on the search. You can also find a whole lot of information under Myeloproliferative Disease (MPD) since ET is one of them, the worst being leukemia. There are also support groups for other people suffering from this disease. Don't get depressed. It is a very treatable disease. Go ahead and research it. Of all the MPDs, it's actually the best to get in my opinion. Take care and good luck. Happy researching. Kellya304 Fri, 14 Mar 2008 00:00:00 GMT thank you Kellya304 for your encourging words.... if the medication beeing prescribed makes you sicker than the ET then is it better to not take meds and hope for the best? i read where some of the meds actual help to turn the ET into actual lukemia....i mean....there has to be a better way to get yoru platelets down.  maybe a natural way with excersize or something lol... if anyone has had luck getting their platelets down naturaly please let me know..  Have a great day everyone and good health to you robertb1962 Fri, 14 Mar 2008 00:00:00 GMT Hi Robertb, I'm glad you found some comfort in my words. As for the medicine, researching it and discussing it at length shows that there is a very slim chance for me to develop leukemia. For you, that might be different due to your relative having it. I don't know what the genetic connection of leukemia is so I couldn't say. So far, when I lapse or take a break with the meds my numbers climb fairly quickly. For instance, I've been sick lately and had to stop taking it for 2 weeks. My numbers jumped up 200,000 in that time alone. Basically, I'm just concerned with keeping them to a manageable number so I don't run the chance of blood clots or bleeding out. Yes, the side effects are annoying but so far I have not found another way to keep the platelets in check. Please let me know if the dietary changes and exercise work. Due to my other health issues, exercise is not really in the cards right now. But, as soon as I get those in check, I'll try anything to beat this disease.Thanks for the feedback and encouraging words. I hope that all goes well for you and good luck. And same here, if anyone has any luck with alternative therapy to get those numbers down... Please post it! Take care Robertb,  Kelly Kellya304 Sat, 15 Mar 2008 00:00:00 GMT  On 3/7/2006 Barbara2m wrote:Maryann: I have spent hours on the internet and in various medical data bases researching ET. I think that probably your GP just isn't aware of ET and that's why he didn't catch it by your blood tests. From what I understand, the bone marrow will tell them where you are in the disease - also rule out other potential disease. I had mine two weeks ago and I tried to approach it without fear. I found out from a reference book at the library exactly how it is done. My sister told me to remember to breathe and that really helped. The doctor gave me something to calm my nerves and then something to numb the spot. I can honestly say that it didn't hurt at all because I wasn't fearful. There was bruising at the site and alittle sore the next day. But that being said - you have your cancer to deal with also. I hope you have a good support system that you can rely on and you aren't facing this alone. The hardest part of ET for me is my doctor can't really answer all my questions. Also there is no one I can talk to about it here as it is so rare. I plan to start a support group for the upstate area of South Carolina so that we can help each other. Are you a part of a breast cancer support group? Please keep posting here and let us know how you are doing.Hi too am from Upstate South Carolina. I hope there is still a support group for this area. If there is I want to join.I am 58 years old female. I was diagnosed 13 years ago and was treated at MD Anderson for 10 years. I am currently getting treatments at the univ of michI have been taking inferon a for 13 years. My platelets went from over a million to normal range and have stayed there.I was tested for the Jax2 mutation last year and I am possitive.Do any or you know what that means as for as treatment and prognosis?Would love to talk with any of you who need support or have some for me.hehehe.Looking forward to getting to know you and learning about our condidtion. scang Wed, 02 Apr 2008 00:00:00 GMT Hi... I'm from Indonesia. I have a friend that have this disease.She is 29 years old. We've known the disease 2 years ago. Her doctor adviced her to take hydrea, but she is afraid because the doctor said that if she takes hydrea for along time it may cause leukemia. so for this 2 years she got no treatment.She has a painful life for this 2 year, especially this year. Now i just want to know about the doctor statement. Is the doctor right that hydrea can cause leukemia???? and what about the other treatment?? thank you. intan Sun, 20 Apr 2008 00:00:00 GMT Hello Robertb I too am 45 in a few weeks. I was dx w ET 5 years ago, although I know for a fact that I have had it since about 1998. I researched all of my medical records and found the counts elevated from about that time point. In 1998 i also started having symptoms, lighting strikes in my vision., a;so known as silent migraines, loss of vision in one eye at a time, needle and thread like pains in my legs and very tired all the time. I was diagnoised in 2003,after a lapse in my health insurance.My counts were 950,000 and climbing. I have been on hydrea since and I hate it, it really makes me tired and I too am depressed because So Much IS UNKNOWN about this disease. I need you to know that I totally understand how you are feeling. I am very frustrated to know that this will affect the rest of my life, and I too am young like you. How are you feeling??? How are you doing with this???Please let me knowMichelle missygirl11 Sat, 10 May 2008 00:00:00 GMT Hello, I was just diagnosed with ET.  I am a 38 years old female.  My blood count is 1250. My Doctor told me its not a concern till it reaches 1500.  I am quite concerned and feel that its just being shrugged off.  He only has me on baby aspirin for clotting.  I have been having headaches, body aches, and am drained most of the time.  Should I be concerned and get a second opinion or just relax about it.  I hope someone out there can give me some advice. Denisea1 Sat, 09 Aug 2008 00:00:00 GMT Hello Denise, Sorry to hear about your dx of ET. I have been living with the dx of it for 5 years now. Please by all means get a secound opinion re your treatment. Have your levels been monitored over a time period? Also, because you are symptomatic,my Dr. told me that is why I am being treated. I know what you must be going through, I have been there. Were you dx'd with a bone marrow aspiration? If so did the test you for the Philidelephia chromosome? And have they run the JAK2 on you yet? I too see a hemetoligist, he's womderful! In May of this year I had finally had enough of the Chemotherapy(Hydrea), and decided it was time for a Naturalpath Dr. I now see both. I have managed to control the overproduction of platelets with natural herbs and diet. No hydrea since May. The deep aches, which I know you can feel also, have also been less and I have so much more energy. Let me know how you are doing? Take Care and God Bless! Missygirl missygirl11 Sun, 10 Aug 2008 00:00:00 GMT Hi Missygirl, my name is Elizabeth. I’m a 52 yr old woman from Alberta. I was diagnosed with ET May of this year. I was very discouraged when my hematologist said the method of treatment included a chemo drug. I thought I was in very good shape – fit and I ateA whole grain diet – with little refined food. I continue to look for more information and alternatives to the hydroxy and wonder if you would share with me what herbs/etc your naturopath is giving to you, or the name of your dr? I expect you live in America? I am west of Edmonton, Alberta. I have been to an alternative clinic in Mexico. It’s known as a cancer clinic, although many diseases are treated there. My highest platelet levels were 2300 which is higher than anyone else I’ve read about. Since the original diagnosis the levels have been all over the place – did come down fairly quickly though with a heavy dose of hydroxy. Also wonder if the platelets are easier to control if they haven’t been so high? Any ideas?Eli cas92 Mon, 25 Aug 2008 00:00:00 GMT  On 8/25/2008 cas92 wrote:Hi Missygirl, my name is Elizabeth. I’m a 52 yr old woman from Alberta. I was diagnosed with ET May of this year. I was very discouraged when my hematologist said the method of treatment included a chemo drug. I thought I was in very good shape – fit and I ateA whole grain diet – with little refined food. I continue to look for more information and alternatives to the hydroxy and wonder if you would share with me what herbs/etc your naturopath is giving to you, or the name of your dr? I expect you live in America? I am west of Edmonton, Alberta. I have been to an alternative clinic in Mexico. It’s known as a cancer clinic, although many diseases are treated there. My highest platelet levels were 2300 which is higher than anyone else I’ve read about. Since the original diagnosis the levels have been all over the place – did come down fairly quickly though with a heavy dose of hydroxy. Also wonder if the platelets are easier to control if they haven’t been so high? Any ideas?EliHi there, My name is Karen and I have been diagnosed for a year.  I am 54 years old and have led a very active life.  I teach tennis.  Since my diagnosis I have slowed down quite a bit. I also take Hydrea.  My body seems to be responding well to it.  Platelets are in the 300's now.I am wondering what they told you in Mexico?  I seem to have a hard time in the heat.  Calf pain and leg cramps.  Also get the headaches.  I think the hydrea gives me mouth sores that are like blood blisters inside my mouth.  Does anyone else get those?Also, I noticed that blood seems to be pooling on the top of my feet under the skin.  All blue and that aches.  Weird stuff...I also get weird joint aches, very deep pain at times.Has anyone noticed a ferritin connection?  My ferritin is very low.I also bruise really easily, probably from the aspirin.But all in all, I feel pretty good.  My energy level is somewhat comprimised but I still find that I seem to have lots of energy.  I too eat a super healthy diet and look really fit and athletic.  Although, I have noticed that I have lost muscle mass from the hydrea, I think?Sorry for rambling, I just have never met anyone with my diagnosis, ET or ever spoke to anyone with it.  I also have the JAK2 gene.I look hearing from others.... Karen   Court Karen Sat, 30 Aug 2008 00:00:00 GMT Hi all, My husband Phil was resently diagnosed with ET. A routine blood test showed his platelets at almost 1,200,000. We went to a Hematologist/Oncologist and had the bone marrow aspiration/biopsy which confirmed ET. From what we were told, you need the bone marrow test to see if the condition is ET or Secondary Thrombocytosis. My husband said the test was not painful as we were misled to believe it would be. The H/O Dr put him on Agrylin. He's been on it now for nearly 4 weeks. The first week it brought the count down to 600,000 and the second week they came down to just over 300,000. So the Dr reduced the dose from 3 a day to 2 a day and the count went back up in a week to over 800,000. Now we're back to 3 a day. But the Dr told us it is going to be trial and error to find the right dosage to manage the platelet count. Atho there is a lot good info on the internet about ET, right now we're in the same boat in wanting to find a Dr that understands this disorder and can answer questions. When we ask the H/O certain questions about symptoms..he tells us to ask our GP. But the GP is not familiar with the disorder. Phil was sick in June with a virus or something and had a fever that went on for days. He's now sick again with fevers. You can' t help but wonder if this is related to the disorder....if maybe it lowers your resistance. These are the kinds of questions we have. As for flying with this disorder. We've heard that sitting for long periods of time can cause problems with the legs. It's important to get up and move around to stimulate circulation since clotting is one of the complications that may occur with ET.   Terry-W Thu, 04 Sep 2008 00:00:00 GMT Hi my name is peteI have had et for 7 years. Started on agrylin, and got realy sick on it. I even had a  seizure on it. My wife is a nurse and she made me get off of it. I now take hydoxrea and i have no trouble taking it. Things will get better after a while. There is hope for a cure with the jak2 gene inhebiter. Dont worry here is life with et. About his legs, i had the same proble untill i started hydroxea, now my numbers range from 400-550 and i have been on it for 6 years. An asperen a day keeps the pain away. Here is a web site to look at.  Http://www.mpdfoundation.org/drugdiscovery.htm     Tecman Fri, 05 Sep 2008 00:00:00 GMT It is  On 8/30/2008 Court Karen wrote: On 8/25/2008 cas92 wrote:Hi Missygirl, my name is Elizabeth. I’m a 52 yr old woman from Alberta. I was diagnosed with ET May of this year. I was very discouraged when my hematologist said the method of treatment included a chemo drug. I thought I was in very good shape – fit and I ateA whole grain diet – with little refined food. I continue to look for more information and alternatives to the hydroxy and wonder if you would share with me what herbs/etc your naturopath is giving to you, or the name of your dr? I expect you live in America? I am west of Edmonton, Alberta. I have been to an alternative clinic in Mexico. It’s known as a cancer clinic, although many diseases are treated there. My highest platelet levels were 2300 which is higher than anyone else I’ve read about. Since the original diagnosis the levels have been all over the place – did come down fairly quickly though with a heavy dose of hydroxy. Also wonder if the platelets are easier to control if they haven’t been so high? Any ideas?EliHi there, My name is Karen and I have been diagnosed for a year.  I am 54 years old and have led a very active life.  I teach tennis.  Since my diagnosis I have slowed down quite a bit. I also take Hydrea.  My body seems to be responding well to it.  Platelets are in the 300's now.I am wondering what they told you in Mexico?  I seem to have a hard time in the heat.  Calf pain and leg cramps.  Also get the headaches.  I think the hydrea gives me mouth sores that are like blood blisters inside my mouth.  Does anyone else get those?Also, I noticed that blood seems to be pooling on the top of my feet under the skin.  All blue and that aches.  Weird stuff...I also get weird joint aches, very deep pain at times.Has anyone noticed a ferritin connection?  My ferritin is very low.I also bruise really easily, probably from the aspirin.But all in all, I feel pretty good.  My energy level is somewhat comprimised but I still find that I seem to have lots of energy.  I too eat a super healthy diet and look really fit and athletic.  Although, I have noticed that I have lost muscle mass from the hydrea, I think?Sorry for rambling, I just have never met anyone with my diagnosis, ET or ever spoke to anyone with it.  I also have the JAK2 gene.I look hearing from others.... Karen  Hi KarenIn Mexico I went to an alternative healing clinic -a great numberof cancer patients there. Dr. there said this ET is a immune problemand he was hopeful that they would have success.  I am scheduledto go back in Jan.  I keep searching meanwhile for any info I can get,hoping there is an alternative to taking chemo the rest of my life.  Itis peculiar that we cannot find anyone to talk to, outside of a messageboard like this, to talk to regarding this problem.  I am not positive forthe JAK2 gene - doesn't seem to make any difference on how the diseaseruns its course. I also get mouth sores, but not too often.  And the body/joint aches aresometimes overwhelming. While dealing with the aches for years, I just thought I inherited arthritis, as my dadhas it.  Seems the best way to feel better in that aspect is to push itphysically.  I love to cross country ski in the winter and I go to a womansfitness center 3x/wk.  It all helps, and I'm thankful that I have the energyto do so. Keep positve and physical.Eli  cas92 Tue, 09 Sep 2008 00:00:00 GMT Hello,I was dx in 1989 with ET I was 31 and I am happy to say I am now the big 50!!!!!!!! I started out with my count 2.5 mill...and they put me on Hydrox..only for my entire body to break out in hives~~~So I  was sent to the Mayo Clinic in Jacksonville Fla..(I live in North Carolina)and put on (at the time ) a research drug--Anagrelide---and for years until it was FDA approved received through the Mayo Clinic---and then have it was approved and bought by another drug company they changed the name to Agyrlin.....I continue every 4 weeks w/CBC and stay from 200-300,000 and take 2x per day of the meds...I also take Ticlid--(you can't take aspirin on the Ag.) to control TIA's (min-strokes)--I also take Atenolol for SVT (rapid heart rate)--side effect from the Ag. and I have a funny heart~~I also take Lipotor -high Cholest,(also a possible side effect from the Ag.) Synthyroid -for Hypothyrodiosm--heredetery--msp---and lots of Vitamins~~~~and a Great glass of wine when ever I want!!!! When I was first dx there wasn't any information like there is now!!!! I will hold each new day and a gift and if anyone out there needs a ear to listen i am here!!!!! becca renee Mon, 15 Sep 2008 00:00:00 GMT  On 8/30/2008 Court Karen wrote: On 8/25/2008 cas92 wrote:Hi Missygirl, my name is Elizabeth. I’m a 52 yr old woman from Alberta. I was diagnosed with ET May of this year. I was very discouraged when my hematologist said the method of treatment included a chemo drug. I thought I was in very good shape – fit and I ateA whole grain diet – with little refined food. I continue to look for more information and alternatives to the hydroxy and wonder if you would share with me what herbs/etc your naturopath is giving to you, or the name of your dr? I expect you live in America? I am west of Edmonton, Alberta. I have been to an alternative clinic in Mexico. It’s known as a cancer clinic, although many diseases are treated there. My highest platelet levels were 2300 which is higher than anyone else I’ve read about. Since the original diagnosis the levels have been all over the place – did come down fairly quickly though with a heavy dose of hydroxy. Also wonder if the platelets are easier to control if they haven’t been so high? Any ideas?EliHi there, My name is Karen and I have been diagnosed for a year.  I am 54 years old and have led a very active life.  I teach tennis.  Since my diagnosis I have slowed down quite a bit. I also take Hydrea.  My body seems to be responding well to it.  Platelets are in the 300's now.I am wondering what they told you in Mexico?  I seem to have a hard time in the heat.  Calf pain and leg cramps.  Also get the headaches.  I think the hydrea gives me mouth sores that are like blood blisters inside my mouth.  Does anyone else get those?Also, I noticed that blood seems to be pooling on the top of my feet under the skin.  All blue and that aches.  Weird stuff...I also get weird joint aches, very deep pain at times.Has anyone noticed a ferritin connection?  My ferritin is very low.I also bruise really easily, probably from the aspirin.But all in all, I feel pretty good.  My energy level is somewhat comprimised but I still find that I seem to have lots of energy.  I too eat a super healthy diet and look really fit and athletic.  Although, I have noticed that I have lost muscle mass from the hydrea, I think?Sorry for rambling, I just have never met anyone with my diagnosis, ET or ever spoke to anyone with it.  I also have the JAK2 gene.I look hearing from others.... Karen   Hi Eli,Thanks for your response to my posting.  It sounds like you are very physically active as well.  That is great and encouraging.  I am still very active as well.  I am very curious as to what type of treatment they do in Mexico.  You must have felt positive about it to be going again in January.It is a very weird thing to think that I might be on chemo the rest of my life.  But, my body seems to be adapting very well to the hydrea.  Of course, there is no telling what the long term effects of it are.  But I guess it does what it needs to with the platelets.Have you been to this website; mpd-netIt is amazing, I recently found it and the message board has many more posts.  Check it out    http://listserv.acor.org/archives/mpd-net.html Thanks again for your response.  It is great to meet people with our diagnosis.  If it weren't for the internet, I would have never spoken to anyone with our diagnosis.Best Wishes for Health!Take Care,Karen         Court Karen Wed, 17 Sep 2008 00:00:00 GMT  On 9/5/2008 Tecman wrote:Hi my name is peteI have had et for 7 years. Started on agrylin, and got realy sick on it. I even had a  seizure on it. My wife is a nurse and she made me get off of it. I now take hydoxrea and i have no trouble taking it. Things will get better after a while. There is hope for a cure with the jak2 gene inhebiter. Dont worry here is life with et. About his legs, i had the same proble untill i started hydroxea, now my numbers range from 400-550 and i have been on it for 6 years. An asperen a day keeps the pain away. Here is a web site to look at.  Http://www.mpdfoundation.org/drugdiscovery.htm    Hi Petel, Thanks for your encouraging words. Phil has been having what we believe to be side effects from Agrylin. They have been so upsetting the O dr took him off Agrylin yesterday. Because we are so new to this disorder and it's a bit scary, we don't know quite how to interpret his symptoms and know if they are drug related or disorder related. Phil was getting nauseous, then just overall sick, loss of appetite, migraine type things happening, numbness occurring in arms & hands, mouth watering, fatigue...etc. Phil also takes an adult aspirin a day, which could also upset the stomach  What's really encouraging to hear you say at this point is that you are doing better with the Hydrea. We've had a fear of that treatment, and the impression it would be worse than Agrylin. And from what we have been told...there really aren't any other choices. The O dr was hoping he wouldn't have to come off Agrylin because it was working for him. But he said he should come off it to see if the symptoms go away and be able to determine if they were drug or ET related.We go back to the O dr on Tuesday. Meanwhile it's just the aspirin till then and hopefully his count doesn't sky rocket in the meantime. Thanks again for sharing. Terry   Terry-W Fri, 19 Sep 2008 00:00:00 GMT  On 8/10/2008 missygirl11 wrote:Hello Denise, Sorry to hear about your dx of ET. I have been living with the dx of it for 5 years now. Please by all means get a secound opinion re your treatment. Have your levels been monitored over a time period? Also, because you are symptomatic,my Dr. told me that is why I am being treated. I know what you must be going through, I have been there. Were you dx'd with a bone marrow aspiration? If so did the test you for the Philidelephia chromosome? And have they run the JAK2 on you yet? I too see a hemetoligist, he's womderful! In May of this year I had finally had enough of the Chemotherapy(Hydrea), and decided it was time for a Naturalpath Dr. I now see both. I have managed to control the overproduction of platelets with natural herbs and diet. No hydrea since May. The deep aches, which I know you can feel also, have also been less and I have so much more energy. Let me know how you are doing? Take Care and God Bless! MissygirlHiMissygirl, What did you experience with the Hydrea? And what are the Naturalpath options and how do they control the platelets? I just wrote a long message explaining what my husband Phil is going thru..so if you read that, you'll know our situation.Thanks for your sharing,Terry   Terry-W Fri, 19 Sep 2008 00:00:00 GMT Hi its pete again.Allways take hidox at late nite one hour before bed, and he will not have a problem.   Tecman Mon, 22 Sep 2008 00:00:00 GMT i was told this yr that i have thrombocytosis but my count hasn't been high enough for them to put me on meds  . which i'm glad of that . but i'm having trouble finding information on it ..... i have been having the chills and then  yesterday i had fever blisters that has come .... so i really dont' know if this is something that goes with it or if it is something else.....anyone knows .......  please inform me ....   what do i need to know about this type of cancer that i can't find the infor on .....help is needed. baseballmom45 Tue, 23 Sep 2008 00:00:00 GMT  On 9/15/2008 becca renee wrote:Hello,I was dx in 1989 with ET I was 31 and I am happy to say I am now the big 50!!!!!!!! I started out with my count 2.5 mill...and they put me on Hydrox..only for my entire body to break out in hives~~~So I  was sent to the Mayo Clinic in Jacksonville Fla..(I live in North Carolina)and put on (at the time ) a research drug--Anagrelide---and for years until it was FDA approved received through the Mayo Clinic---and then have it was approved and bought by another drug company they changed the name to Agyrlin.....I continue every 4 weeks w/CBC and stay from 200-300,000 and take 2x per day of the meds...I also take Ticlid--(you can't take aspirin on the Ag.) to control TIA's (min-strokes)--I also take Atenolol for SVT (rapid heart rate)--side effect from the Ag. and I have a funny heart~~I also take Lipotor -high Cholest,(also a possible side effect from the Ag.) Synthyroid -for Hypothyrodiosm--heredetery--msp---and lots of Vitamins~~~~and a Great glass of wine when ever I want!!!! When I was first dx there wasn't any information like there is now!!!! I will hold each new day and a gift and if anyone out there needs a ear to listen i am here!!!!!Hi becca renee, Was wondering if you had any other side effects from the Agrylin that made it difficult for you to function. It was making my husband, Phil, queezy, light headed, and basically just overall sick to where he couldn't function well. And because this condition is so new (only 6 - 7 weeks ago diagnosed), he is also struggling with the mental and emotional side of having this and having to take this kind of drug. Phil had some mild side effects in the 1st week, but they seemed to leave him but after about 4 weeks, came back on stronger. The question in our minds is...do they eventually go away...or do side effects tend to just go on and on. I don't expect you to have the answers...just thinking outloud, but would appreciate hearing more about your experience with Agrylin. Thanks Terry  Terry-W Wed, 24 Sep 2008 00:00:00 GMT  On 9/24/2008 Terry-W wrote: On 9/15/2008 becca renee wrote:Hello,I was dx in 1989 with ET I was 31 and I am happy to say I am now the big 50!!!!!!!! I started out with my count 2.5 mill...and they put me on Hydrox..only for my entire body to break out in hives~~~So I  was sent to the Mayo Clinic in Jacksonville Fla..(I live in North Carolina)and put on (at the time ) a research drug--Anagrelide---and for years until it was FDA approved received through the Mayo Clinic---and then have it was approved and bought by another drug company they changed the name to Agyrlin.....I continue every 4 weeks w/CBC and stay from 200-300,000 and take 2x per day of the meds...I also take Ticlid--(you can't take aspirin on the Ag.) to control TIA's (min-strokes)--I also take Atenolol for SVT (rapid heart rate)--side effect from the Ag. and I have a funny heart~~I also take Lipotor -high Cholest,(also a possible side effect from the Ag.) Synthyroid -for Hypothyrodiosm--heredetery--msp---and lots of Vitamins~~~~and a Great glass of wine when ever I want!!!! When I was first dx there wasn't any information like there is now!!!! I will hold each new day and a gift and if anyone out there needs a ear to listen i am here!!!!!Hi becca renee, Was wondering if you had any other side effects from the Agrylin that made it difficult for you to function. It was making my husband, Phil, queezy, light headed, and basically just overall sick to where he couldn't function well. And because this condition is so new (only 6 - 7 weeks ago diagnosed), he is also struggling with the mental and emotional side of having this and having to take this kind of drug. Phil had some mild side effects in the 1st week, but they seemed to leave him but after about 4 weeks, came back on stronger. The question in our minds is...do they eventually go away...or do side effects tend to just go on and on. I don't expect you to have the answers...just thinking outloud, but would appreciate hearing more about your experience with Agrylin. Thanks TerryHey, Terry,Sorry I am just now responding~~~~I was told NOT to take aspirin with Agrylin~~~so I take Ticlid which makes your platelets slick..this works great for me..and have been taking it for at least 10 years......I was having TIA's from the ET...and haven't had any since taking it....I think when having ET or any kind of medical prog..you have so many emotions going on inside your head that its hard sometimes to distinguish them between the medical and mental--or at least that is what happened to me...give the meds and the mind time to process it all and in time you and Phil will be able to know the difference between the 2. Most of my side effects have subsided..and any problems I have are brought on by my own over indulging::))  becca renee Mon, 29 Sep 2008 00:00:00 GMT hi everyone .  Iwas diagnosed with ET over a year ago. my platelet count hovered around 6oo but for the last few months is in the hi 700's.  I just started taking Hydroxyurea a few days ago 500mg.  I will keep you all informed of my progress.  My oncologist made it sound that ET is very controllable and no big deal as long as u are under treatment.  Good luck   henry z Wed, 01 Oct 2008 00:00:00 GMT  On 9/29/2008 becca renee wrote: On 9/24/2008 Terry-W wrote: On 9/15/2008 becca renee wrote:Hello,I was dx in 1989 with ET I was 31 and I am happy to say I am now the big 50!!!!!!!! I started out with my count 2.5 mill...and they put me on Hydrox..only for my entire body to break out in hives~~~So I  was sent to the Mayo Clinic in Jacksonville Fla..(I live in North Carolina)and put on (at the time ) a research drug--Anagrelide---and for years until it was FDA approved received through the Mayo Clinic---and then have it was approved and bought by another drug company they changed the name to Agyrlin.....I continue every 4 weeks w/CBC and stay from 200-300,000 and take 2x per day of the meds...I also take Ticlid--(you can't take aspirin on the Ag.) to control TIA's (min-strokes)--I also take Atenolol for SVT (rapid heart rate)--side effect from the Ag. and I have a funny heart~~I also take Lipotor -high Cholest,(also a possible side effect from the Ag.) Synthyroid -for Hypothyrodiosm--heredetery--msp---and lots of Vitamins~~~~and a Great glass of wine when ever I want!!!! When I was first dx there wasn't any information like there is now!!!! I will hold each new day and a gift and if anyone out there needs a ear to listen i am here!!!!!Hi becca renee, Was wondering if you had any other side effects from the Agrylin that made it difficult for you to function. It was making my husband, Phil, queezy, light headed, and basically just overall sick to where he couldn't function well. And because this condition is so new (only 6 - 7 weeks ago diagnosed), he is also struggling with the mental and emotional side of having this and having to take this kind of drug. Phil had some mild side effects in the 1st week, but they seemed to leave him but after about 4 weeks, came back on stronger. The question in our minds is...do they eventually go away...or do side effects tend to just go on and on. I don't expect you to have the answers...just thinking outloud, but would appreciate hearing more about your experience with Agrylin. Thanks TerryHey, Terry,Sorry I am just now responding~~~~I was told NOT to take aspirin with Agrylin~~~so I take Ticlid which makes your platelets slick..this works great for me..and have been taking it for at least 10 years......I was having TIA's from the ET...and haven't had any since taking it....I think when having ET or any kind of medical prog..you have so many emotions going on inside your head that its hard sometimes to distinguish them between the medical and mental--or at least that is what happened to me...give the meds and the mind time to process it all and in time you and Phil will be able to know the difference between the 2. Most of my side effects have subsided..and any problems I have are brought on by my own over indulging::)) Hi Becca Renee,Thanks so much for responding. We've been having a tough time here. Phil just couldn't seem to tolerate the side effects of the Agrylin. He was having a hard time with feeling spacey. He also was experiencing a rapid heart beat at times and numbness in arms & hands. He did really good with it for about 3-4 weeks. Then the Oncologist lowered the dose from 3 to 2 a day cause it was really bringing the platelets down. Well...the platelets went up. After going back on 3 a day...that's when he started feeling lousy.  But you're right about indulging the mind. We both know that his emotional reactions to the drug has to play a part in the side effects as well. But the O dr. took him off the Agrylin and put him on Hydrea. He did fine last week taking 2 a day...but it didn't bring down the platelets, so he went on 4 a day and he's getting side effects again.  I've made an appointment with a dr in NY who specializes more in MPDs. Our O Dr here is useless for trying to talk to about drug side effects or even the disorder itself. We desperately need to talk to a Dr who will just "talk" to us and be able to answer our questions. So were you saying that you DID have some side effects from Agrylin...but they went away in time? Now I wonder why one Dr would not use aspirin with Agrylin and another would...that's disturbing. Phil is also taking aspirin with the Hydrea. I hate writing all this stuff cause I don't want to be discouraging to anyone else trying to deal with this disorder. From what I've been told...many people do not have big problems with the drugs, so I guess Phil is the exception. We just need to know if the drug side effects will lessen over time. Thanks again, Terry   Terry-W Fri, 03 Oct 2008 00:00:00 GMT