CancerCompass message board discussion started by Judy S. on 7/3/2003 http://www.cancercompass.com/message-board/message/all,719,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all I was diagnoised in 1996 with Thrombocythemia It is a cousin to Leukemia, thats what my onocologist said. I had a bone marrow test. I was told that this is caused by an over production of Platelets, I was giving Hydrea to bring down my count. Does anyone else have this? I went in a week and a half ago and my platelets are back up again. Thank you, Judy Judy S. Thu, 03 Jul 2003 00:00:00 GMT Hi, did a little search for you, and this is what came up: People with thrombocythemia who don't have complications often don't need treatment - especially males younger than age 50 and pre-menopausal females. A doctor may recommend periodic checks of the platelet count. When needed, treatment may include drugs such as anagrelide (Agrylin) or hydroxyurea (Hydrea, Droxia) to lower the platelet count. I hope someone else will come along with more info. Sorry I couldn't be of better help. Take care, Jo Joanna C. Fri, 04 Jul 2003 00:00:00 GMT Joanne, Thanks so much for the info. My doctor wants me to see an oncologist but I really can't afford it at this time. I'm going to see if he will treat me. Like I said I was treated with Hydrea when I was diagnosed. Thanks for the help. Hugs, Judy Judy S. Fri, 04 Jul 2003 00:00:00 GMT Hi again, Since my diagnosis with ovarian cancer (Stage 3) 2 years ago, I have found out that chemo is not the only way to treat malignancy. There are many ways, and they include diet, exercise and lifestyle changes. While you are waiting for treatments, you might want to look into complimentary therapy. Whatever you have, I strongly recommend you to read "A woman's guide to healing from Breast Cancer" by Nan Lu. I learn so much from it. The other one is "Beating Cancer with Nutrition" by Patrick Quillin. Read them, and start healing. Best wishes, Joanna Joanna C. Fri, 04 Jul 2003 00:00:00 GMT Any info with this disease and pregnancy would help; my daughter is 12 weeks along and just diagnosed and having a hard time finding info. thanx so much Terryh. Sat, 14 Aug 2004 00:00:00 GMT Hi Judi, I just read your post about Thrombocythemia, and I hope you have already found the information that you need. If not I have a few that you can check out. WebMD has a Health Guide A-Z, and it is just www.webmd.com, then you can follow the screen info to the guide. Medline Plus has more info, the site address is www.nml.nih.gov/medlineplus/ency/article; there is a great deal of information there, and the last one is the University of Maryland website; www.umm.edu/blood/thrombo.htm. There is a great deal of information availabe on the web, Google, Ask Jeeves, Yahoo, etc. search engines will bring up a ton of information. I like Google the best. I am a medical transcriptionist and that is the site we use most for medical information, spellings, etc. I also have Chronic Lymphocytic Leukemia, and that is how I found your post, through a link from an e-mail that I get for reasearch information, etc. I wish you well, and God's blessings, I will pray for you, and if you are interested in contacting me for a shoulder to cry on or more help with information, I have many books for reference that I can suggest, let me know. Sincerely, Margaret D. Boone, Iowa Margaret D. Mon, 11 Oct 2004 00:00:00 GMT Hi, my name is Dalene, My husband was diasgnosed with Myelofibrosis in Sept, 2002. Things have went pretty well. The doctor he had was great! (He goes to a VA Hospital, which is fine he has been treated very well.) He now has a new doctor.(Doctors change often.) The new doctor has decided he actually has Thrombocythemia. Their symptoms are so much alike my husband and I are not real sure what to think. The new doctor put him on Hydrea and it made him so ill. In a week he lose 17 pounds, He could not keep any foods in him. The doctor now changed him to Agrylin. He was doing so well before. We're alittle confused why he would change things when he was doing fine. Maybe he knows what he is doing. Lets hope so! Thanks for listening, Dalene Pandasorceress Tue, 19 Apr 2005 00:00:00 GMT Dear D, I cannot help but cringe when I hear of VA teatments, but I won't tell any horror stories tonight. Please know that if he was better, and was also feeling better, that's a great combo! And no, it definitely makes no sense for your dear one to now be suffering! Yes, I believe the new guy DOES know, as most of them are under agreement to promote the overuse of sundry pharmaceuticals that are NOT derivatives, but by-products of the petrochemical industry, of which I was long a part. I have found that most conditions can be reduced to non-issues by achieving balances in the serum minerals & electrolytes, which will also raise the pH in the cells up from the acid state it is no doubt in. An effective means of hurrying this along is by having a couple of glasses of freshly made veggie juices, with an occasional fruit juice blend, spread out through the day for ease of glyc-spikes, and balance, balance, balance!Use of apples, carrots, a little celery, and a few raw sunflower seeds(not in the juice!)will provide all amino-acids, which will permit any repairs, save energy, stimulate rbc production, pick up the hemoglobin while reducing homocystine and normalizing neurotransmitter levels. This should be a good start toward general health. Call if there are residual problems. God bless, and good health! Sincerely, Michael L M., ND Nomorecancervictims! Fri, 08 Jul 2005 00:00:00 GMT HI Joanne, Last Aug 18 i undergo bone marrow aspiration and my hematologist told me that i have an essential trombocytosis... which accounted for the tremendous increased of platelet count...at first i cant believe that i have such disease... but i realized that we should take time for our self and love it... stress free and proper nutrition.... My only question is was this also called polycethemia vera? Rocky2005 Fri, 02 Sep 2005 00:00:00 GMT My husband was diagnosed a year and a half ago with Thrombocythemia, but he was only told to take an aspirin every other day unless his platlet count reached over a million. Today he was tested and it was a million two. The dr. now wants him to take Hydrea and told him that it has no real side effects. I researched Hydrea on the net and it has so many side effects!! I am angry with the dr. and feel that my husband's care was comprimised because we haven't been given all the information. If anyone is taking Hydrea, can you please let me know what side effects you have experienced if any? Thanks so much! Lori Lori331 Thu, 22 Sep 2005 00:00:00 GMT hi lori331, I was also diagnosed of essential thrombocythemia where in my platelet counts prior to my bone marrow aspiration last august 18 hits 950t ... i started taking hydroxyurea (hydra) that day and every week i have my cbc test and platelet count test... my first week after taking it my pltlt count down to 918t, i continue to take charge on my proper foods like of course vegetables and somebody told me about the concentrated mineral drops its actually a supplement and i asked my hematologist about taking supplements and i was allowed only teas, herbals and not on capsule form... he needs to know my supplements for his reference of course. after a week of dropping 40 drops daily on all my intake foods, my platelets down to 900t.. doing great till after another week it down to 600t, im still using hydra... after another week still footed on 600t but my wbc is now on its normal values... and now after two weeks my platelets count 201t... but my doctor still adv. me to take my hydra... and now my thumbnails are gray in color... that's the effect of hydra on me... hopefully next week... i want my hematologist stops me from taking the hydra... because in one of my research any chemo is a toxin therapy... till next week, and you should research on the terms that your doctor tells you and ask the posibility of taking natural way of treating it.. stress free will make your husband and i healed... agree? Rocky2005 Sun, 25 Sep 2005 00:00:00 GMT Hi, Rocky M. Yes, I agree that natural supplements are way better than any kind of chemo. So, taking the Hydrea, you haven't been nauseated or vomiting or experiencing hair loss or losing weight? Also, did you know that Hydrea has been shown in some cases to make this disease progress to leukemia? My husbands doc has never done a bone marrow biopsy. Everything I read says to do one. My husband has been diagnosed for a year and a half with the only tests being blood tests every 3 months. I wonder why? I don't think our doc knows what he is doing. Do you know if your doc did a liver or kidney function test on you prior to putting you on Hydrea? Or did a mass red blood cell study? Please let me know. Thanks! Lori331 Lori331 Sun, 25 Sep 2005 00:00:00 GMT hi lori, At first i am afraid of the effects of it, specially when i research,but hydroxyurea capsule will take effect slowly unlike chemo on veins like on the cancer patients... Im through with my system utrasounds such as kidneys,bladder, ovaries, gallbladder, spleen, liver... etc I even have my colonoscopy on my colon... prior to my hydra med... By the way, from what country are you? Im in the Philippines. I suggest you see another doctor or find a second or even third opinion... Rocky2005 Wed, 28 Sep 2005 00:00:00 GMT We are in the process of finding another doctor. We see a new doctor in Lubbock on Monday so wish us luck. I am hoping that we will get all the necessary tests done then. I am also hoping that we can just stay on aspirin which is what my husband is taking right now to try to take his platelet count down. I'll let you know what happens. We are from the United States - Texas. Wow, you are a long way away being in the Phillipines. Do you find that you get good care there? Are you happy with your doctor? American doctors do not like their patients to ask questions - they think we are "playing doctor". Lori331 Wed, 28 Sep 2005 00:00:00 GMT Hi Lori, Try to research and find out about trace minerals drops from Great Salt lake of Utah, it's not far from you, Here in the Philippines, there's someone who introduce CMD that might help me cure this kind of disease... it's from Utah. Yes, i highly recommend my hematologist to anybody... You can ask your querries about your supplements, the side effects of the med that he recommend... It is sad to know that you are paying your doctor and you are deprive of the things you should know about the disorder that me and your husband have... Till i hear from you soon... Here's my email address --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- ... rocky Rocky2005 Wed, 28 Sep 2005 00:00:00 GMT I have et and hydrea is doing well for me.. blood counts and 3 top hems told me better than having a stroke..etc.. see a specialist. and keep faith and platelets down.. for now.. I am scared but have a small child .. 46 and have alot to live for.. 500 mg daily .. aspirin.. and nexium .. and chinese herbs acupuncture.. massage etc.. Hermosagal Wed, 30 Nov 2005 00:00:00 GMT Hi Lori, I am a 45 year old mother of 2 and I was diagnosed with ET when my platlet count reach 1.61million. I was on hydrea for 2 weeks, then anagrelide for 3 weeks, and now back on the hydrea. The hydrea has not been too bad. Just some anemia and fatigue, but it is still early. On the other hand, the anagrelide affected my heart and darn near every other part of me. Never thought I'd be happy to be back on Chemo. I had 2 bonemarrow biopsies and a lot of other tests before being put on the hydrea. Times are tough, but together we can survive! Bonnie b Fri, 09 Dec 2005 00:00:00 GMT My husband started on the HU almost 3 weeks ago after he had a TIA. He is having weekly CBC's and liver function tests. On the fifth day of taking the HU, he experienced nausea and severe stomach cramping. Since then he has only complained of fatigue. The HU has been affecting his liver functions but not too terribly bad. He is drinking lots and lots of water to keep his system flushed out. This week's tests revealed that the HU has pushed down his RBC, hgb, and hct so that he is anemic. His platelet count prior to the HU was 1.2 million. Two weeks later it is 908,000. The dr. is not very happy that the plt. count is not dropping quickly, but the other counts are being affected. My husband has also had 3 moles that have suddenly changed shape, color, and size. Hydrea can cause skin cancer but it is usually after long term use according to the label. I have talked to some others who are taking the HU and they have had moles change relatively quickly as well. My husband is going to get them biopsied on Dec. 30. So will keep everyone posted as to the nature of the moles. Talk to you soon. Lori 331 Lori331 Sat, 10 Dec 2005 00:00:00 GMT i have been diagnosed in nov with ET and i am not on hydrea yet the dr said that i am just below the percentage to go on it now .... i was wondering if anyone has been at my stage and how long did it take to go on the meds ...he indicated that i was only a few tenths of a percent from treatment levels ,.. Suzieluwho Mon, 16 Jan 2006 00:00:00 GMT Hi Susan T, I am 49..diagnosed Mar 2005 with platelet level 1132. Am on Aspirin only... levels are slowly increasing..last count was 1200. My next visit to Haemo is February. I feel ok, except for ringing in my ears, sometimes soreness in my feet. Sometimes suffer fatigue. I play golf and also do other exercise. So I am not going to worry too much..no point. Haemo will not put me on Hydroxyurea until platelets go to 1500 or when I reach 60 years of age (some birthday present!!), which ever comes first. I live in Ireland and drink Guinness regularly. Dark beer is supposed to reduce platelets but Guinness has not worked for me. Keep well and try not to worry. p.s. weather is cold here at present. cheers Dave Daviehug Thu, 26 Jan 2006 00:00:00 GMT hi dave, Perhaps your dr. is right of not letting you take med till your platelets goes up to 1500, and if you read some of the articles on the net that still manageable, but for me since when i reach 700t+ counts and my body tends to ache, i take hydroxyurea but in two weeks time my platelets will go down and i stopped taking med..thanks for my hematologist, who let me stop to take the med when my platelets tends to normalize in counts. Take supplements instead rather than taking beer... just concern friend cheers and not to worry on everything not important. rocky Rocky2005 Thu, 02 Feb 2006 00:00:00 GMT First off I am also from Ireland (living in Texas) but no guinness for me tastes like wall paper remover!!! I have just been diagnoses with ET. Since last january my cancer Dr. has put me through a battery of tests that could cause this.I have not heard any mention of that. First off for Lymphoma, anemia, lupus, overian cancer,rheumotoid Arthritis and I did not have any. So by process of elimination he said I will not need a bone marrow as I have ET. My count is 693 now. I feel great no aches or pains anywhere. I do not want Hydrea for the rest of my life. I take a baby aspirin daily and was wondering about Chinese medicine of Herbalists..has anyone tried them? My DR had tears in his eyes and said he didn't want to put me on Hydrea and the other Anagrelide cost over $1100.00 for a hundred pills and the side effects are worse.So has anyone tried Alternative medicine? Maura Maura Sat, 04 Feb 2006 00:00:00 GMT Judy please read what I wrote to Dave as I explained myself. I am pooped tonight otherwise i would rewrite it but it was meant for everyone. I guess I worded it incorrectly. In the meantime I have a copy of all my tests and my sister is going to give them to someone at Sloan Kettering in NY. They have something new there now. A board reads all the test results and if there is anything that can be done then they send me to that Specialist only if he thinks he can help other than the Hydrea and Anagrelide. You would think they could do something. Wishing you all the very best...Maura Maura Sun, 05 Feb 2006 00:00:00 GMT Hi all, I was just diagnosed with Essential Thrombocythemia 2 weeks ago. My count is 693. I am only taking a baby aspirin myself to keep them from sticking together. I am from Houston Texas and have been going to an oncologist who is a blood Dr. for a year since my Dr. noticed my count was 619 then. he had me take all kind of tests that could be causing this like..lymphoma, rheumotoid arthritis, anemia, lupus but I didnt have any. If i did and it was fixed then the platelets would go down. I told him I was going to England for 2 months and would think about it when i came back. on the plane over here a flight attendant told me her grandmother had this in the 1980,s and the University of Brighton in UK was doing some study on this disorder where they killed off the platelets with radioactive. It didn,t work for everyone but it did for her grandmother and her count stayed down for 10 years then rose and she went on Hydrea for 13 years and that surely by now there probably are more advanced studies. So i have people researching for me to see where they might be doing something similar. My Dr. said he like to put people on Hydrea at 600 count but i said no way i am too low. looking back on old tests my platelete started to rise about 8 years ago after i had gall bladder surgery. They think that maybe when we loose blood and out immune system tells our bone marrow to make extra platelets it just kept on doing it. An auto immune disease. Hopefully there must be some other way for us rather than take hydrea for ever...Maura Maura Wed, 15 Feb 2006 00:00:00 GMT Hi all, I was just diagnosed with Essential Thrombocythemia 2 weeks ago. My count is 693. I am only taking a baby aspirin myself to keep them from sticking together. I am from Houston Texas and have been going to an oncologist who is a blood Dr. for a year since my Dr. noticed my count was 619 then. he had me take all kind of tests that could be causing this like..lymphoma, rheumotoid arthritis, anemia, lupus but I didnt have any. If i did and it was fixed then the platelets would go down. I told him I was going to England for 2 months and would think about it when i came back. on the plane over here a flight attendant told me her grandmother had this in the 1980,s and the University of Brighton in UK was doing some study on this disorder where they killed off the platelets with radioactive. It didn,t work for everyone but it did for her grandmother and her count stayed down for 10 years then rose and she went on Hydrea for 13 years and that surely by now there probably are more advanced studies. So i have people researching for me to see where they might be doing something similar. My Dr. said he like to put people on Hydrea at 600 count but i said no way i am too low. looking back on old tests my platelete started to rise about 8 years ago after i had gall bladder surgery. They think that maybe when we loose blood and out immune system tells our bone marrow to make extra platelets it just kept on doing it. An auto immune disease. Hopefully there must be some other way for us rather than take hydrea for ever...Maura Maura Wed, 15 Feb 2006 00:00:00 GMT I was diagnosed in November 2006 following a bone marrow biopsy and I was started straight away on the tablets. The only side affects I experience are of getting breathless just from walking upstairs and I am always tired. I am 46 and feel I should be able to do more than this. There are a lot of side affects listed with my medication but the doctors seem reluctant to say whether my headaches are aggravated by it and I don't know what to think. I also take 75mg of Asprin each day. How does everyone else on Hydrea feel? Jill Jillb Wed, 08 Mar 2006 00:00:00 GMT I was diagnosed with Thrombocythaemia in November 2006 following a bone marrow biopsy and I was started straight away on the tablets. The only side affects I experience are of getting breathless just from walking upstairs and I am always tired. I am 46 and feel I should be able to do more than this. There are a lot of side affects listed with my medication but the doctors seem reluctant to say whether my headaches are aggravated by it and I don't know what to think. I also take 75mg of Asprin each day. How do other people taking hydrea feel? Jill Jillb Wed, 08 Mar 2006 00:00:00 GMT Hi Jill - I started Hydrea about a week ago and also have been tired and it has taken my appetite away. Luckily, that's the way it affects me. I had several people, including my hematologist, say that most of the side-effects listed for Hydrea are for much larger doses than that given for ET (usually 500mg). I am researching nutritional approaches to build up my immune system and positive thinking. There doesn't seem to be many options out there for us special ETers! I did read on some other bulletin board that migraines were a symptom of too many platelets so maybe when you get your numbers down, they will disappear. Good luck and stay positive! Barbara Barbara2m Fri, 10 Mar 2006 00:00:00 GMT Maura is the treatment in Great Britian that you mention interferon? I have read where that can have dramatic results - however, it is pretty rough to go through and not used much in the US except for cases that don't respond to the two medications available. Your count isn't very high at this point. I hope you are doing some research online. Enjoy your vacation and keep us posted on how you are doing! Barbara Barbara2m Tue, 14 Mar 2006 00:00:00 GMT Hey Rocky can you tell me the name of the trace minerals you are using? Is that possible on these boards? I am trying to get as much information as possible how to help my body survive the Hydroxyurea!! I found a wonderful book, recommended on these boards by someone with cancer, called "What to Eat Now" by the Cancer Lifeline. It has information about what nutrients your body needs, minerals, micro-nutrients, etc. Very good information. I found a copy at the library and ended up keeping a number of recipes to try. I hope you get this message, as the message I'm replying to is dated last September and I don't really know how these boards work. Anyway, thanks for any information you can provide Barbara Barbara2m Thu, 16 Mar 2006 00:00:00 GMT My sister called me from USA last night to tell me that some woman told her that Apple Cider Vinegar brought her platelet count down. Thats all i know. I will try and find out her count and how much it dropped. However it does say that Apple cider vinegar thins blood. I bought one at the store today but will buy a natural one at the health Store later on. Who knows..it is worth a try even though i cannot see it happening. Maura Maura Thu, 23 Mar 2006 00:00:00 GMT Hi Everyone! I was diagnosed with ET last week and immediately started on 1000 mg. of Hydrea and 81 mg. of aspirin per day. This was after 2 months of testing, testing and MORE testing for other reasons to explain why my platelet count was over 600 and climbing. (CT Scans, X Rays, tests for inflammatory diseases, etc.) Then finally the bone marrow biopsy. I was just wondering how other people are handling this diagnosis on an emotional level. All the waiting, then to be referred to an oncologist, only to find out it's some rare disorder. I am only 45 years old. I have been an LPN for almost 21 years, but haven't been able to work for over a year, so I'm finding out a lot of medical information about ET on various web sites, but have no one to shares my fears and concerns with. Why is information about this disease usually found on cancer sites, and why am I seeing an oncologist, if this isn't cancer? Did anyone else experience any sort of symptoms of ET prior to diagnosis? Has anyone else read that life expectancy is 10-15 years? Any support or information I can get would be greatly appreciated. Sasha1 Wed, 29 Mar 2006 00:00:00 GMT Hi Michelle! I'm with you - the information out there is all under cancer - I even have to go to a cancer center to see my hemotologist!! It is very hard on me to see others with cancer symptoms. I think what has worked for me so far (I've only been diagnosed with ET for a month!) is I am approaching this with a positive attitude. I am taking 500 mg of Hydrea and hope that I will be able to lower my dose to once a week. The most disturbing thing is that my doctor can't give me any information at all about how Hydrea works and what the long term effects of it on my body will be. I know it is highly toxic and worry about my kidneys, bones, etc. I have gotten some good nutrition books from the library but again they are all cancer nutrition related. So not sure how exactly that relates to ET and Hydrea. Many of the titles were recommended on these board for other cancers. Emotionally it is hard and like you, I feel like there are so few out there with ET. I wish there was a support group I could go to - my doctor wants me to start one but I just don't have the energy right now. Fatigue is a problem and I don't know if its the disease or medication. I am also too young for this as it is considered an "old age" disease. My symptoms prior to diagnosis were some nosebleeds and bloodshot eyes - not really anything you'd even go to the doctor for! What were your symptoms? Do you experience fatigue too? What other side effects do you have? I hope we can support each other on this journey. My prayers are with you - try to stay positive! Barbara Barbara2m Thu, 30 Mar 2006 00:00:00 GMT Hi Barbara- Thanks so much for writing. It feels good to know I'm not alone. My symptoms started last August. I was so fatigued! It felt like my arms & legs were made of cement. Then I started getting short of breath whenever I exerted myself and I had to quit my Pilates class. My face would get so red and I would sweat so profusely when I exercised that I was starting to freak out the other people in my class. At first my doctor thought it was menopause. Then she put me on a blood pressure pill after I did a cardiac stress test & fainted after 5 minutes of walking. My blood pressure & pulse both soared when I got on the treadmill. At that time my platelets were only 551-565, but she referred me to the oncologist when they reached 600 - because of all my symptoms. I was dizzy a lot, too, and gradually got so weak and tired I couldn't even mop my floors or vacuum. My first few days on Hyrea were not fun. Fatigue like I've never known, nausea, weakness, headaches. It's starting to ease up now, but I worry, too, about what these chemicals will do to my body over time. I'm trying so hard to stay positive and believe I will return to a more normal energy level someday. I'd like to walk my dogs or ride my bike without feeling like I'm about to fall over!! Today was the first day I began to feel a little bit of pep coming back, so maybe the Hydrea is working. Thanks again for sharing. With information, education and the grace of God, this journey might just turn out alright! Prayers to all, Michele Sasha1 Thu, 30 Mar 2006 00:00:00 GMT The reason we are sent to Oncologists is because they specilize in blood. My regular MD thought nothing of my platelet count being in the 600's and told me not to worry. My Gasterologist found mine when I had a colonoscopy and sent me to a Hematologist and like you he sent me for every test possible hoping to find the cause and fix it and then my platelets would go down to normal but alas everything was normal. By process of elimination he said I had ET and there was no need for a bone marrow bioposy. I am in London rught now and in April I will go to MD Anderson Cancer Hospital for one and a second opinion. I happen to live in Houston TX. From looking back on my CBC tests it looks like mine started to climb about 6 years ago after I had Gall Bladder Surgery. I am still looking for a clinical trial. If I have no choice but to go on Hydrea I will opt for 500mg and pray.I will call The University of London next week and see if they are offering any moreI worry about flying i know it is dangerous.My only symptoms is a burning sensation in my legs when I sit or in bed. It has been 3 mos now since my last blood test and I am sure the count has risen. Hopefully someone will find something other than Chemo I pray for all of us to cope and this site helps a lot Maura Maura Fri, 31 Mar 2006 00:00:00 GMT Hi Maura! I saw my blood doctor today for the first time since starting meds (Hydrea)- my #s are back down in the low 600s (when I started at the end of Feb. they were 1.5 million) and one of the questions I asked was about flying because you said your dr. said not too. He has no idea why you were told that unless it was something to do with some other medical problem you have. He told me that flying isn't restricted for ET diagnosis. You are lucky you live close to MD Anderson - they are on top of the pile and known the world over for innovative treatments. I know you will find a good dr there - on their website they have a number of clinical trials listed that maybe you can get into.And they also have 3 drs that specialize in chronic blood diseases. Please keep us posted. Michele - I asked my dr about the fatigue also and he said that in my case it is probably the Hydrea since I didn't have it before I was diagnosed. You just have to hang in there and try to live through it. Some days I wake up feeling tired and if I make myself go out and do errands I usually feel better. Some days it is harder than others but my husband always reminds me that there are so many people that have it worse health wise than I do. I am thankful that its all I have to deal with. Keep in touch you'all! Barbara Barbara2m Fri, 31 Mar 2006 00:00:00 GMT Thank you for letting me know about the three blood Specialists at MD Anderson. By any chance do you know their names so I can make an appointment with one? I WILL ACTUALLY DO IT FROM UK and go immediately when I get home. The oncologist I used in Humble said that blod clots are a concern for everyone when flying but since I have thick blood it is more dangerous. How often do you have to go for blood work? He said I would have to find someone to moniter my blood over here if I start chemo. My husband died and I have met up with my childhood sweetheart. He lives in UK and my family in USA. We both grew up in Irelans. Since we both have familys now (all Grown) and both of our health insurers are in the Country we live in we just go back and forth and that adds to my problem. The care in Uk is not very good nothing compared to USA. I guess theirs is free even though they paid in to it all their working lives but there are sooo many foreigners here now the money is mostly gone. I will keep in touch with this message board and hope everyone does.It is like a shot in the arm to me to be able to talk to others with ET and see how they are coping. Barbara I must say you have a great attitute and i also have a positive one and will not let it ruin my life but learn to cope with itHow is your hair and eyelashes? I see Sasha has double the dose of Hydrea you have. Wonder why? Your dose sure was enough to drop your count. Good to know. God Bless Maura Maura Sat, 01 Apr 2006 00:00:00 GMT Hey Maura - what a wonderful story about your childhood sweetheart!! I guess you are racking up the frequent flyer miles!:) OK, I went back to the MD Anderson website and their specialists are listed on this page: /diseases/mpd/display.cfm?id=7b2b96eb-ed46-4d10-bb71f64f02b62def&method=displayfull for some reason this box won't let me put it all in (not sure about that but the address starts with mdanderson.org then add the rest). You'll need to read the bios to find the 3 ET specialists. Sorry, I saw them all on one page with their pictures before but can't find it now! Anyway, they are at least 5 yrs ahead of everyone else on their treatments so if there are options other than the few we are offered now, they would surely know. My take on the general body of knowledge out there that the rest of the blood drs have is that since their approach to cancer is to nuke it out of the patient, they approach ET the same way. I don't think they know any better and they surely don't see many ET patients in their practice. I asked my dr for the lowest dose available to try first. So we started out with 500mg. I found out on the internet that Hydrea is also offered in 200mg doses but the 2 pharmacists I talked to about it said they'd never seen it lower than 500 and the 200 is probably available only in Canada. My dr explained that platelets are most sensitive to the medication so it works on them first. That's why we need to be monitored so that once our platelets are lowered, it will start working on the red or white blood cells. I had my CBC taken after the 1st & 2nd week of meds. Then the 4th and now I don't have to have it monitored until the first week of June. yea!! If all is going well then we are going to work on adjusting how often I take it so that I don't have to take it every day. I have to say Maura, I was really worried about losing my hair or getting sores around my mouth (both listed as side effects) but luckily the dose is so low that it hasn't been a problem. I also feel like these bulletin boards are my link to sanity. This is really hard to deal with since there is so little info out there. One question - have you noticed your friends reaction to ET? My friends either can't deal with it at all or have been pretty supportive. It has taught me alot about how I should approach friends with chronic disease. take care Barbara Barbara2m Sun, 02 Apr 2006 00:00:00 GMT Hi Maura & Barbara, I love that you can keep living your lives, strong and positive! I struggle, but I'm finally starting to get a little of my energy back and I'm feeling better since I've been on the Hydrea for 2 weeks. I saw my oncologist yesterday and my platelet count is down to 564. He said that's good, since he doesn't want the count to drop too rapidly. He will recheck my CBC in 4 weeks & adjust my dose, if needed, from there. He doesn't want me to stop the Hydrea to see if I'm in remission for at least a year. He told me that the platelet counts can sometimes stay normal for a while, but when a patient has ET, they will always go back up again at some point. He would prefer not using any drugs at all, except baby aspirin, but I had so many symptoms & my bone marrow was so abnormal, he felt the Hydrea was necessary to prevent stroke/heart attack, etc. He doesn't feel Plavix would provide any extra benefit. He also prefers Hyrea over Anagralide or Interferon because it's been his experience that Hydrea works better without as many side effects. As for friends/family, some seem to be able to grasp the nature of this disease, while others can't seem to understand. Usually, the bottom line is - do you have cancer or not? A few people have been supportive & reached out with offers of comfort or assistance, but not too many understand why I'm so tired most of the time. The Hydrea made me a little nauseated, dizzy & sleepy for the first week, but that seems to be subsiding, thank goodness! No one has said anything to me about flying, but when I questioned whether a Carotid Doppler would be a beneficial test, my oncologist was receptive to the idea. He wants to wait and schedule it at my next visit in 4 weeks, after we see what my platelets are doing. So far, my white count is "perfect", if there is such a thing. My RBCs are just slightly elevated. If I can continue on this path, I feel pretty lucky. I'm also thankful for this site, and for having others who are actually interested in bone marrow and platelet counts!! Take Care! Sasha1 Wed, 05 Apr 2006 00:00:00 GMT First off Barbara thanks for the information. I intend to follow through and go see one of the Specialists at MDAnderson. Sasha I am glad you are starting to feel a little better. As for my friends they are wonderful and caring. I only found out 6 days before I came to UK which was the ist of Feb. or thereabouts.They are in touch by email and worried about me but they all know I can handle it. I have no choice so I will live and enjoy my life as best I can. Too bad this happened though as we had planned on moving to Ireland where we both come from but I need my American Doctore and Hospitals as they are the most advanced in the world and also I do not have insurance for any other Country. I will have a CBC test as soon as I get back to Texas but we are going by NY and stay there with my sister and then to Texas. He has to come back here by June 17th. I doubt if I can make it by then with all the "stuff" I need to do with ET but I will as soon as i can and then we will come back to Texas for the Winter. I hope to figure out a way to do it Me myself I feel fine and symptomless. However I do have burning in my legs in bed but I have had that for years before my platelets started to climb. I keep copies of all my tests so it was 10 yrs ago that they started to go over the 400 count.Does anybody else have that problem? I saw on a different site where MD Anderson had done a clinical trial with 30 people They used Interferon. 15 had complete remission and 1 half remission. I wonder if the rest were given a placebo or Interferon?.But I do intent to find out after I get back. Barbara where do you live and Sasha where do you live? Bye for now..Maura Maura Fri, 07 Apr 2006 00:00:00 GMT About.com Article: http://rarediseases.about.com/b/a/183306.htm Maura Maura Fri, 07 Apr 2006 00:00:00 GMT I have tried in vain to get that link to work for me and no luck. I am returning next Tuesday to USA. A week or so In Ny with my sister and then Texas. My daughter is trying to set up an appointment with one of the Specialists but we can't come up with a name. If you have any luck finding a name I would appreciate it. I dont know what I am doing wrong with the link you sent. I copied and pasted it on Google and put MD Anderson.org in front but nothing happened. I feel I wont get an appointment right away so I wanted my daughter to set it up first. Other than my legs burning in bed and pains in the legs in bed I feel fine the minute I get up and move about. Maybe the bed is too small or something for the pains but should have nothing to do with the burning sensation. How are you doing? Also how are you doing Sasha? Keep us posted..I will. dreading my new CBC count after i get back..i know it will be higher. Maura Maura Wed, 12 Apr 2006 00:00:00 GMT Hi Maura - do you know how we can be notified when someone has posted on this message board? For some reason, I thought we'd get an e-mail every time someone posts. Anyway, I just checked and there are several that I didn't know about. OK, at MD Anderson you need to find the Leukemia Dept. I have them bookmarked. I went down the list of specialists and got these for you: Francis Giles (pioneered the use of interferon in ET), Allessandra Ferrajoli, Stefan Faderl, Jorges Cortes and Farhad Ravandi-Kashani all specialize in chronic leukemia. Srdan Verstovsek specializes in myeloproliferative disorders. Any of them would probably be more knowledgeable than 90% of the hematologists elsewhere. Do you need the 800 # to call for appts? There is also a online referral form you need to fill out. I live in South Carolina now - we moved here from Tyler TX just 1 1/2 yrs ago. I wish we were closer to MDA now because I am sure the care would be tops. When my kids are in college (4 yrs), we will probably move back to San Marcos as we have some property there. I am finding that many of my long term friends reaction to ET is fear. They stop calling me probably because they feel I'm going to die. So I haven't told any more. My sister is convinced that she's losing me too. Also most people know about leukemia so to make it short I describe it as chronic leukemia (which indeed it is!) Anyway Maura - I hope that's the info for MDA you need. Let me know if you need anything else and please keep me posted about how you're doing. I will just check these boards every day instead of thinking they will e-mail me everytime there's a new post. Oh - for leg cramps - you need more potassium. Eat bananas! Barbara Barbara2m Fri, 14 Apr 2006 00:00:00 GMT Hi Barbara..Thank you so much for the names.As far as I know the only way to read postings is to go in the site and look as they don't email me when you post a message. I sent the name to my daughter to call tomorrow. However if it has to be done on line they call within 24 hours to check on ins. etc and I wont be back until the 27th. I will immediately go to my MD for a CBC test..dreading the new number. How are you doing?i just tell everyone I have a chronic blood disorder. Everyone thinks I am a very strong person so nothing will happen to me. I do not dwell on it but as soon as I start some treatment i suppose things will change with everyone. I read that MD Anderson has something going with one of the Universities here so I hope that i can be monitered when I am here otherwise I wont be able to stay here. I was hoping to spend the Summers here and the Winters in Texas. I have my doubts now with me having ET. Are you loosing any hair?There is a very expensive shampoo plus other products called THYMUSKIN. IT WAS CREATED FOR CHEMO PATIENTS IN GERMANY.I was loosing a lot of hair and went for it. My hair immediately stopped falling out and my own hair is 3 times as thick. Whether it will help it grow back I have to wait and see. I bought the 6 oz shampoo and the gel treatment which is the strongest product and it came to $325,00 or so. I only do it 4it times a week and i have 1/2 bottle of the gel and a few more of the shampoo left for 3 1/2 months. I went to see an old friend and the first thing she said was..Oh you have so much hair. looks like we are the only two on this at the moment. God Bless Maura Maura Sun, 16 Apr 2006 00:00:00 GMT Hi Barbara and Maura, Well, I've had to cut back on my Hydrea from 1000 mg. to 500 mg. per day because I was getting weaker and sicker by the day. This past week was horrible! Nausea, dizziness, weakness, palpitations, tremors, etc. I have to call my oncologist tomorrow. I couldn't even have Easter with my extended family today because I am still so weak & fatigued, although I'm feeling a little better each day. Having my stepson drive 4 hours home from college to spend the weekend with us really boosted my morale! I couldn't take the Hydrea at all on Friday (or eat much of anything). Yesterday, my husband finally insisted that I just take one 500 mg. capsule a day until I am able to reach Dr. Jaslowski (my oncologist). I live in the small community of Pulaski, about 1/2 hour outside of Green Bay, Wisconsin. My parents and my four siblings, with their families, all live in Green Bay. The driving time ranges from 25 to 50 minutes to see them. Dr. Jaslowski is about 20-25 minutes from me. My family doctor had me collect a 24-hour urine specimen last week, to check for carcinoid syndrome or adrenal gland tumor(s). I'm still waiting to hear from him. He also told me that I should make sure to get plenty of magnesium to help my ET symptoms. I've been too sick to look up good sources of magnesium, but I'll do that now. I've always had thick hair and I haven't noticed any excessive hair loss yet. I try to keep a positive outlook and do as much for myself as I can. I've only cried for a few moments, just a couple of times, since this all started happening, but I'm not one to cry a lot anyway. I don't want to whine or be a baby about it, but it really is scary and frustrating and upsetting sometimes. Hope you're both doing well today. All we can do is keep going, right? Take Care, my ET friends! Sasha1 Sun, 16 Apr 2006 00:00:00 GMT I am soo sorry to hear how sick you have been. 1000 mg was a very strong dose dont you think? I hope 500 will work for you and you wont be so sick. I must look up what you were tested for Tomorrow I am flying back to NY..staying there and then to Houston.Then i must do something about my ET. I have a pair of Hospital surgigal stockings to wear on the plane and I am worried about clots even without ET but now my chances are much higher as it is 7 1/2 hours to Ny from here and 10 from Houston to London.Long hours. I read something on the plane coming over about valium not mixing with thick blood. I would like to take one but afraid to. cant remember what i read only telling myself I had better not. I had some 5 years ago as a muscle relaxer for the cramps I got in my leg muscles when i would fall asleep. Now I wonder if there was a connection to ET. Thanks for keeping us posted even though you are so sick. Bye for now must finish packing will let you and barbara know how i did. Maura Maura Mon, 17 Apr 2006 00:00:00 GMT I am feeling much better today, so my prayers were answered. I hope that 500 mg. will work for me. My oncologist said I could try the lower dose until my next appointment. The problem is that my counts aren't extremely high because the extra platelets are mostly staying in my bone marrow: large, ugly, clumping, sticky and abnormally shaped. So, my count isn't a good reflection of what's being made in the marrow and that puts me at higher risk for leukemia developing. I still haven't gotten the results back from my 24-hour urine, but I looked up the tests online (5-HIAA & VMA). Interesting, especially the VMA, which checks for benign or malignant tumors in the adrenal glands. My symptoms more closely resemble that than ET, so I sure hope I don't have both!!! I don't envy you being on a plane for that long. Ugh! Keep moving your extremities around as much as you can - wiggle your fingers/toes, tighten and release your arm/leg muscles, change positions (even slightly can make a big difference). I've been a nurse for 22 years and I worked most of them with the elderly in the nursing home, so I know first-hand what can happen when a person is immobile or stuck in a wheelchair, unable to move independently (without having the extra burden of ET). It's so important to keep the blood moving in any way possible. As far as Valium is concerned, I read something similar about that, too. Xanax (Alprazolam) is an even better medication for your needs, if you can get a prescription. Wishing you a speedy, safe trip and praying that your counts are better than you expect! Sasha1 Mon, 17 Apr 2006 00:00:00 GMT Michele - I almost cried today when I read your post about how the Hydroxyurea side effects are causing you to be so sick. I agree with Maura - seems like 1000 mg is a pretty high dose. My dr told me that its when you take a high dose of it that you get the side effects. I am not sure why your dr prescribed so much???? I don't understand why your platelets would stay in the marrow? Is there anything online I can read about that? I really am just learning (fast!) about this disease so I don't know exactly what is happening to you. I feel like this bulletin board is really helpful as far as information - I've learned so much more than what my dr has told me and also learned what I need to ask! One thing that I am learning is that I just have to slow down and face one day at a time. Some mornings I wake up feeling so fatigued even before I get out of bed! I used to be "up and at 'em" and now I have a hard time waking up. It is a real adjustment. But then I read your post about all the awful side effects you are dealing with and I feel like the fatigue is something I shouldn't complain about. Anyway, I hope that your dr will be able to correctly diagnose you soon so that you don't worry too much. take care and keep us posted! Barbara Barbara2m Mon, 17 Apr 2006 00:00:00 GMT Hi Barbara, You are such a compassionate person! Your concern for my health is so touching, especially knowing that you are battling this mystifying disorder, too. My oncologist said that my bone marrow is having a hard time sending the blood cells out into circulation because they are so tightly packed in there, plus they are very sticky & clumped together. The red cells are fighting a mighty battle & my circulating red count is even a little high. That's why I'm so thankful my white count continues to be stable. If it gets too crowded in my bone marrow and the platelets are the most aggressive cells, the rest will give up and die off, leaving me with leukemia. Hence, the reason for the "big guns" treatment of 1000 mg. Hydrea right away. I was just so disappointed that I got so sick from it. I'm doing pretty well at 500 mg. so far. Not 100% by far, but not bad overall. I'll think of you when I wake up feeling so fatigued and I'll know I'm not alone! That really helps. I hope things are going well for Maura. God Bless. Michele Sasha1 Wed, 19 Apr 2006 00:00:00 GMT Maura, hi! I'm new to this board, just found it tonight. Everything was very interesting, but I was taken aback when I read about your burning legs. I've had that for the last, hmm, year or so. I had thought it might be menopause related, (I'm 46), so I asked all my friends and relatives and my internist, but no one had ever heard of it. I tried looking it up on the internet, too. I had kind of just resigned myself to thinking, one more crazy thing, never thinking it might be connected to ET. The burning I feel is usually confined to my lower legs, between ankles and knees, although every so often it creeps up to just above my knees. It is only on the "fronts" of my legs, not encompassing the whole leg and feels like a painless burning. I've looked at my legs and they don't look red at all when it happens, nor do they feel any warmer to the touch than any other part of my body - I've even had dh check. I'm curious if your burning is similar. I will definitely mention it to the hemotologist when I go to see him next week. Agnes Genessa Sun, 23 Apr 2006 00:00:00 GMT Hi Agnes. Please tell us more about your ET. Count etc. and what you are on as this is our only way of finding out about this terrible disorder. I have had the burning for a few years but it has become intense in the last few months. It seems like the burning is from the knees to the toes and only in bed. I think it is there but as long as I am up and about I dont notice it. Also I have a strange pain down the front but more uncomfortable than pain. Enough to keep me from going back to sleep sometimes. I am tired a lot now but I think it is jet lag as NY is 5 hours behind England at least I am hoping. After I get back to Texas I am going to have a second opinion from MDAnderson. Do keep in touch with us as right now just Sasha, Barbara and myself are and it is very helpful for all of us. How do you feel? What dose and what kind medicine? and any info. you can tell us. When I see the DRS. at MDA I will inform everyone what is going on. God bless Maura Maura Mon, 24 Apr 2006 00:00:00 GMT Hi! I wrote a long response, but it hasn't appeared yet. Didn't notice when I posted before how long it took and I don't want to duplicate. Genessa Mon, 24 Apr 2006 00:00:00 GMT well, since that one was posted quickly, and I didn't remember the "finished" step, I guess my previous response was lost in computer land. My count is about 970 last check - done by my internist. Hemotologist told me I didn't have to go back to him until iternist said to, but she told me to & I didn't make an appointment. Might have been a bit in denial??? Anyway, internist very upset at high count and no appt and sky rocketing blood pressure, so she put me on hydroxyurea 500 mg 2 x a day, and a safety aspirin (325 mg delayed release) and increased my blood pressure medicine. My wb count was high too, but can't remember how high and I was feeling well the day I had the blood taken. I have an appt with hemo next week and went for another sonogram today - checking my spleen and my internist will be checking blood again on Wednesday. I'm tired all the time, but it seems like I have been forever. No other symptoms, except the burning legs, which you are the first person I've ever seen mention them before. The burning for me used to only be at night, but now I've noticed it when sitting, seems to have come back - I didn't realize when it was gone - after maybe 2 months of not having it. I'm so glad I found this board. Genessa Mon, 24 Apr 2006 00:00:00 GMT I'm happy you found us, but it also saddens me to learn of another young person living with this awful disorder. How long ago were you diagnosed with ET? I am 45 years old and thought my symptoms were menopausal as well. It sounds like you have a really great internist who is really on the ball - that's so terrific!! I get the burning sensation in my lower legs sporadically, but I've just chalked it up to my "thick" blood having difficulty getting down to my feet and back up again. Since the burning usually happens when I'm resting, I tighten & release my calf muscles to help the blood vessels move things along. I also move my legs a little and point my toes up toward my nose, then point them down as far as I can to work the weaker muscles along the shins. It seems to help. You may have read that I was taking 1000 mg. of Hydrea, too, but I got so weak and sick that I had to cut back to 500mg. I'm doing pretty well on that, plus my BP med and a baby aspirin every day. I'm very fatigued yet and I get overheated easily, but otherwise I can't complain. I can totally relate with all the ultrsounds/scans/tests. The whole process is so physically and emotionally exhausting. I see my oncologist next Tuesday (May 2nd) for another count. I can't wait to see if it came down since I backed off on the Hydrea. My next bone marrow will give us a better picture than anything, so I'm really looking forward to the ordeal again! I'll find out when he wants to do it when I see him next week. I see Maura made it back to the U.S. in one piece. I'm so relieved. I'm hesitant to admit it, but actually went to a faith healer last Friday. My Aunt is very involved with the Catholic Church and she knew of a healer (Stigmata) who was coming to Green Bay from his home in Escanaba, MI. She really wants to help me somehow, so I went just to please her. I figured it couldn't hurt. Wouldn't it just be something if my counts have completely returned to normal? I'm not holding my breath, but I suppose any options are open, as long as they don't cause any harm. Don't get discouraged, Genessa. We face a rough road, but at least we're not alone. My oncologist said he doesn't want my platelet count to come down too quickly, so I have to be patient. My last one was in the mid-500 range and I'm satisfied with that. Hope to hear more from you, and from my other ET buddies. Take Care. Sasha1 Mon, 24 Apr 2006 00:00:00 GMT I'm having trouble sleeping - probably a rebound result of getting up at 4 AM so that I could have half a cup of coffee well before the 6 hour fast/no drinking for the sonogram :( so, of course, I'm on the internet some more. Seems ET is all I can think of lately. I'll definitely try the stretching when I get the burning sensation again. I think I usually have been trying the opposite, keeping as still as possible - which isn't working. Oddly, I used to have the itchy, crawling legs years ago - haven't had it in so long I can't remember... when I read your original post, for some reason I was thinking you were doing 2 x 1000 a day, not the 2 x 500. I was getting a little "car sick", but as when I was pregnant, I discovered that I can keep nausea away by keeping food in my stomach - not good for dieting, but more comfortable feeling. I'm optimistic for now that the hydrea will have a positive effect on the count. Funny, I was feeling great when the count was in the 400s. Actually, even when it went up into the 500s I felt good much of the time. I do think I'm lucky with this internist. When I go to her office, I've noticed that a number of her patients are nurses and other hospital staff from the hospital she is affiliated with. She is also an "old fashioned" type of doctor in that if someone called her and asked a question about me, she actually knows "who" I am and what she has treated me for. I just hope I am comfortable with the new hemotologist she recommended. I was with the last one she recommended, but he retired. I hope your counts are down. Many in my family believe in faith healers. My m-i-l even visited Lourdes (although I can't remember what for???I guess that's good). I've seen faith do wonders when medicine didn't. Good night and you take care, too! PS - my "real" name is Agnes - I just hate it and have gotten used to using Genessa (scrambled and added some letters) Genessa Mon, 24 Apr 2006 00:00:00 GMT Hello. At first I want to apologize, my English skills are not so good (that's because I'm from Finland). My mother was diagnosed with ET in 1987. Before that (in the 70's) she had have problems with her thyroid. Now she's trying to find out what causes essential thrombocytemia. She claims that one of the reasons can be the radiation. There is a few studies made about the effects of background radiation on bone marrow diseases. My mother worked in former Soviet Union when the level of radiation (from nuclear power plant) was very high in the 70's, and her ET was found shortly after the nuclear disaster in Chernobyl, Ukraine. The contaminated cloud came to Finland too. My question is: Has anyone of you thought that your ET ecxist because of the radiation? I am so sorry that so many people have to suffer from ET. I wish Strength to all of you. Aya Daughterfinland Wed, 26 Apr 2006 00:00:00 GMT Hello to you. No I have never had radiation other than..mammograms and chest exray's and an MRI twice. That is something to think about. But with so many people having them done here in USA and this being such a rare blood disorder it doesnt add up. What medicine does your mother take? How high was her count. Seems like she has this for 18 years so please do tell us how she is coping and what dose of what medicine. We would like to compare. Keep in touch with us as our stories help each other. I made it back to Texas today everyone. I went to take my evista pill for bones etc. and for the first time read not to take it in my condition as it can cause blood clots. Wish I read the warnings sooner. Is there any other medicine that we should not take? Anyone know. My "friend" is with me aand I am supposed to go back to England mid June but I really think it will be impossible if I am on Hydrea.Sunday I will fill out the Internet form for MDAnderson as they call within 24 hours. Will keep everyone posted.How are you barbara? havent heard from you lately. How are you keeping Sasha and aaalso Genessa. My legs are burning so much I was going to ask the DR. for a sleeping pill but am scared to take anything new anymore. My sister takes Mirapex for Restless Leg and she gave me 1/4 to see if it helped but it didn't Does anyone have any answers? I have been getting tired easily and actually was falling asleep at a luncheon in NY and had to take a nap for 1 hour in the Hostess house. Wonder if it is jet lag or ET. God bless all Maura Maura Fri, 28 Apr 2006 00:00:00 GMT Hi! It was very nice to here from you. I'll meet my mother soon and I'll ask about her counts and medicines. At the moment I think that she doesn't use anything else but Disperin (aspirin) to make blood more "thin". She got a blood clot in 1986 and was diagnosed with ET right after that. She was partly paralysed (couldn't speak or write for five months) but has recovered almost completely afterwards! I think that's amazing. You just have to believe you can get better. She told me that one of the reasons was me. I was three years old and my mother wanted to be there for me. The treatment was radio active iodine capsule. For two weeks she wasn't allowed to be near to children or young people because of the radio activity. After the treatment her counts went down. Also her headaches disappeared. She's now 60 years old and she is feeling well. I'll write more soon. Remember to trust to a better tomorrow! Aya Daughterfinland Sat, 29 Apr 2006 00:00:00 GMT glad you are back in Texas. At least your body should start adjusting back to the time. It is frustrating not knowing why you are tired. I know, because it is happening to me. I thought I was "emotionally" tired or mildly depressed - had a really bad February, which came after being sick - sinus infection in December, something else in January, ear and throat in February...and I never recovered my energy. Then, on this past Wednesday, I felt GREAT! and realized, it was the first time in months that I felt that good, physically. Unfortunately, since then, my energy level is back down, although not as far down as it had been. I went to internist on Wed, and at least my blood pressure is down, with double the medication. She took blood, but I won't find out the results for a few more days. Go to hemotologist on Monday, so should know if my count is down from the 900s or not on the hydroxyurea. Don't count out England yet. June is still more than a month away. Genessa Sat, 29 Apr 2006 00:00:00 GMT Genessa thanks for your message. Aya thank you for the information. Last night I filled out a form for MD Anderson. Someone is supposed to call within 24 hours for insurance info. etc. When I do get to see a hematologist there I am going to ask about the Radioactive Iodine Capsule that Aya,s mother got and the Radioactive Phosperous that the flight attendant's grandmother got. Both worked for them and see why they are not using such medicine instead of chemo. I am also calling my regular DR for a CBC test. I feel my count has gone up..my legs feel like the skin is stretching but they look the same and are not warm I was worried about blood clots as I read that someone got one on the plane and it took 14 days to show up. I am really upset that my Oncologist knew I was taking Evista and did not warn me about the blood clots also Lipitor which I have but not taken. Does anyone know about these or any other medicine that we should not take? Sasha how about you? Looks like we need to be our own Doctors. Aya thank you for answering and do keep us posted. I would love to know your mothers count now. It is hopeful for the rest of us. Has anyone else asked their Doctors about trying something other than Hydrea? MD anderson had a clinical trial on Interferon and had great results..at least that is what I read on the net. If I didnt have ET I would move back to Ireland with my "friend".My health Insurance will not cover me though. Drop a line Barbara we havent heard from you and hope you are still doing well. Also Sasha. Bye and God Bless Maura Maura Mon, 01 May 2006 00:00:00 GMT Hello everyone, went to the new hemotologist today. My platelets are down from 975 to 610 - he believes due to the hydrea. My blood pressure is way down, too - from 170/90 something (I blocked it out) to 108/61. My wbc came down, but is still elevated, too. Unfortunately, I am still tired. Completely wiped out. He wants me to continue on the hydrea and go back to see him in 3 weeks to monitor and adjust as necessary. Also, to take 81 mg aspirin instead of the 325, but finish out the 325 I bought if I want. He explained that usually in women under 60 we can tolerate high platelets without any complications but that my internist probably prescribed the hydrea because of the excruciating headache I had the day I saw her and since it was bringing my count down and I haven't had any side effects I've noticed, let's keep trying it. He told me to watch out for fevers, infections, bleeding, and dizziness. Fun! Oh, Maura, one thing my internist told me not to take was any kind of migraine medicine...but since I don't I don't remember why not. Genessa Mon, 01 May 2006 00:00:00 GMT Hi All, Today was the first day in a long time that I've a little bit of pep. If only it would last!! Sometimes I feel like pinching myself to make sure this isn't all just a bad dream, but I know I'd just end up with a huge bruise!!! I showed my oncologist my list of medications the last time I saw him (on 4/4/06). Imitrex, which is one of the most popular migraine meds, is on my list, but just as needed. He didn't say I shouldn't take it, but I'll ask him again tomorrow when I see him for my blood count. I haven't had to take anything for headaches for a while now, because the one thing that has cleared up for me are the migraines! I'm definitely grateful for that! I'll also talk to him about any other medication interactions with Hydrea, as well as meds to avoid with ET. I'll talk to my Pharmacist, too, and let you know. My nursing Drug Reference Book doesn't say much, except to use Cytotoxic drugs (other chemo meds) and Radiation Therapy with caution while on Hydrea. Also, the same as Genessa's doctor said: Watch for fevers, infection, bleeding, dizziness. Genessa, I'm so happy for you that your platelet count is coming down so nicely, as well as your blood pressure. Hope it continues! I can totally understand your feeling tired. I feel wiped out most of the time, too. How do people go to their jobs when they feel like this? Maura, I'm so happy that you made it to Texas and I pray we get some answers. It's so hard not to worry about clots, fatigue, etc. ET is never far from my mind these days. Barbara, My thoughts and prayers are with you. Hope you're doing alright. Aya, Thanks for writing and for the information. Your kind and encouraging words mean so much. Ta Ta For Now...... Sasha1 Tue, 02 May 2006 00:00:00 GMT How little I appreciated it when I had it :( I'm still getting through my day, going to work - don't have a lot of choice, but both the sonogram tech and hemotologist asked about my activity level at work (which on "good" days is walking and stairs and sitting - although Monday involved sitting on the stairs :( ). I've been trying to keep active and have been trying to walk with dh every day - don't know if I'm doing more harm than good though. The park track is .8 of a mile and we used to go 3 to 4 times around. Since December, I think I've gone around 3 times once, usually go around 2 times. Today, I should have stopped after 1 time. I don't want to give in to this fatigue...it is so frustrating. But, tomorrow and Thursday I think I will skip - was skipping Thursday, anyway - have to go to a meeting - and experiment that way. Sasha, I wish I could remember what it was about the migraine medicine, but just can't...it might have been that it doesn't mix with the atenolol I take, not the hydrea. Genessa Tue, 02 May 2006 00:00:00 GMT Hello again! I have to make a correction to what I said before: My mother's treatment was not iodine, it was radio active phosphorus capsule. But there is a danger that it might cause cancer if you use it often. My mother has got it three times. She got iodine before, because her thyroid gland was over-producting. I'm sorry for the wrong information. My mother's counts were above 600 when she was diagnosed. At the moment they're 380, but somehow she is still doing well. She can't speak english well enough to write herself, but she sends God's blessing to all of you. Aya Daughterfinland Wed, 03 May 2006 00:00:00 GMT Hello to Everyone, Well, I saw my oncologist yesterday and my count is back down to 563. He took one look at me and decided that it would be worth the risk to stop the Hydrea for 6 weeks and see what my counts do. My RBCs are also coming down - almost normal. I'll be taking 2 baby aspirin per day and checking my blood pressure daily, which is just fine with me. My doc said it's worth not using chemo if my energy level and eating improve, because those are really important in preventing clots and complications, too. If my count is significantly higher in 6 weeks, he'll do another bone marrow biopsy and we'll go from there. Aya, maybe he would be willing to try what your mom had! But in the meantime, I'm looking forward to the vacation from chemo and I'm praying I'll feel better, even though I still have to deal with the same ET symptoms I had to begin with! I really can't even remember what it's like to do everyday things without feeling drained. I asked my doc about any drug interactions with Hydrea and he said only Coumadin (Warfarin), Heparin or any other type of "blood thinners" except the recommended aspirin dose. Otherwise, nothing other than what we already knew. I read somewhere that 2-3 people per 100,000 get ET and most of those are over 60 years old. I looked up the current USA population, which is 298,444,215 people, so I calculated that there are probably about 6,000-9,000 people in the US with ET, but I don't know how many would be under 60. Math is not one of my strongest suits, so I didn't even try to tackle the worldwide population! Just a little fun fact to make your day more interesting :) Keep in touch. God bless us, one and all. Sasha1 Wed, 03 May 2006 00:00:00 GMT that's good news, Sasha! I hope you're able to stay off it! I tried getting extra sleep last night and don't know if the hydrea is working or the extra sleep helped, but had more energy today. So, I decided to walk around the park once (about .8 of a mile) and sit while dh went around again. Agnes Genessa Wed, 03 May 2006 00:00:00 GMT Good for you Sasha..I hope you can stay off of the Hydrea but even 6 weeks is a break. Everyone keeps mentioning blood pressure and migranes. Is that a side effect? So far I have neither. I still have not had a reply from MD Anderson so I will call and see why not. I go to my regular DR. Monday for a CBC test..I am afraid what my new count will be. Genessa I hope you get your energy back. I had a good day today as i made myself stay in bed a few hours longer and tonight I cannot sleep so tomorrow will be a bad day for me. I wonder if anyone is on sleeping pills?My legs burn when in bed. Aya thank you for updating us on your Mother's treatment. That was the same treatment that the flight Attendant told me her grandmother got in England and it worked for her but not for everyone in the group and I will see if I can get it. BARBARA LET US HEAR FROM YOU. God Bless, Maura Maura Thu, 04 May 2006 00:00:00 GMT Thanks for being happy for me and for your support. I'm a little nervous about being off the Hydrea because my ET symptoms aren't much fun, either, and I hope they don't get worse now. But at least I'm not so nauseated and food will start to taste like it's supposed to again. I'm not so dizzy and am getting more things done around the house, therefore I don't feel so guilty about not working (I "retired" exactly 2 years ago today). My husband works so hard and I just hate needing him to assist me when he gets home. I'm STILL waiting for my judicial hearing for SSDI. My attorneys say it should be scheduled by July. The US government and getting Social Security Disability can be a very long and arduous process! Maura, as far as I know, the migraines and high blood pressure are ET symptoms, not side effects of Hydrea. Everyone gets different side effects, but those two in particular are not listed. I'm so glad you haven't had to experience them. I'm hoping and praying that your counts aren't too high. I'll be anxious to hear about your appointment. I have suffered from major clinical depression and insomnia since I was 12 years old, so it's been 33 years. I've been seeing the same psychiatrist for the past 12 years and we've tried at least 40 different combinations of medications during that time, in addition to various therapies and counseling. I even resorted to trying shock treatments about 10 years ago! Nothing works for any length of time. My current regimen has been about the best. Plus, I've had anxiety and PTSD for about 26 years, so I'm no stranger to taking medications. I currently take Ambien, Klonopin and Xanax to sleep (yes, all 3 every night). I'm on Cymbalta and Wellbutrin XL right now for the depression. I'm surprised at how well I'm doing with my depression since I was diagnosed with ET. I was afraid it would send me into a tailspin, but it didn't. I think that I feel more in control of the situation by getting all the information I can and that really helps. This message board has had a positive impact, too, and I always feel better if I can help someone else. Being a nurse was great for that, but though the spirit is willing, the body is just not able any longer. Now that I'm off the Hydrea for a while, I'm hoping my mind will clear, the dizziness will completely subside and I'll be able to get back to writing my novel for more than just short spurts of time! My best wishes go out to all. Sasha1 Thu, 04 May 2006 00:00:00 GMT I truly admire your attitude. I hope your ET symptoms don't return! I'm feeling moderately better the last few days. I don't know if it is the hydrea, but I can't imagine what else it could be. Genessa Fri, 05 May 2006 00:00:00 GMT Hi all, Well MD Anderson contacted me and said they do not take my insurance. It is a Humana PPO. I just turned 65 and I went with that as it offered more. I do not have much time to change as now what ever insurance we are on May 15 we have to stay until the end of the year. They will except medicare but there is no guarantee they will see me. They want all my tests etc. faxed to them..fine but what if they wont accept me I am stuck and have to wait until the end of the year to change and then Humana might not take me back because of this ET. They do pay for Hydrea. I am really interested in Radioactive Phosperous to try out. I will be very busy next week trying to see what I need to do. Since you are all younger than I you wouldnt know. If only I knew this I would have bypassed NY and seen to this sooner. I am happy Sasha and Genessa are doing better. No message from Barbara. I hope she is still doing as well as ever. God Bless Maura Maura Sat, 06 May 2006 00:00:00 GMT Maura, that stinks...I hate insurance coverage! I saw an editorial cartoon recently that had something about the only people who have problems paying for their medical issues are those who have insurance... Then they put in those restrictive dates. My daughter didn't realize the importance of them on her previous job and was without any insurance at all because she didn't read the papers and no one told her that she had two days to sign up because of the transfer periods. My nephew didn't realize the importance of keeping up a certian number of hours at work and due to the fact that he will be 19 and doesn't go to college full time he will now have the choice of paying $400 a month for his prescriptions or not take them. His mother is hoping she'll be able to pay Cobra for him. His "transfer" period is this month and if he doesn't have the hours - he won't be able to sign up until next year. I'm lucky enough that we have GHI - lucky to only be paying something like $200 a month for the full catastrophic with the added ability to have $20 co pays every time you see the doctor. I am thankful that the hydrea is covered, though. I don't know if it is fiinally working - but I'm guessing it is - because I had a really pretty good week-end. Probably, other than that one day in April the most energy I've had in months...was able to get things done and still feel like doing things. Sorry for going off on a rant! I wish you wisdom and luck when making your decision! Genessa Sun, 07 May 2006 00:00:00 GMT I answered you 2 days ago and it is still not printed. Thank you for your concern. I have emailed all my tests to MD Anderson and I am waiting to hear from somebody. Tomorrow is the cut off date for me to change. I left a message this morning but no one has called yet. Yes Insurance is tough nowadays. Did you know the only cure for ET is a bone marrow transplant but the cut off age is either 55 or 60 and it is VERY expensive. I read that on the internet. Sucks. I was awake most of the night with the burning in my legs and also they seemed like they were ready to burst even though I am not overweight. I bought a goosedown mattress cover..hope that is not making it worse. I also bought a 4" memory cover for the mattress but nothing seems to matter. Sasha how are you. I am glad all of you are feeling somewhat better. Hope it stays that way. I do notice I get sleepy easily and then wake up with the legs. Does that sound familiar Genessa? Bye for now Mary Maura Thu, 11 May 2006 00:00:00 GMT As you know, blood clots are one of the greatest dangers with ET. The burning in the legs is very similar to the neuropathy that people with diabetes get, due to impaired circulation of the furthest blood vessels from the heart. If you look up Diabetic Neuropathy, you will get a better understanding of the physiology of it and ways to alleviate the symptoms. The main things to remember are that you don't want to keep your knees bent while sleeping and you don't want anything under your calves that puts pressure on the blood vessels (both slow your circulation even more - and could even block blood flow). Elevating your legs sometimes helps, but only with a pillow or prop of some kind under the ankles/heels, unless you are able to keep moving your legs around, which disturbs your sleep anyway. I was sitting on a stool at our kitchen counter the other day and forgot to move my legs. When I stood up, my feet were both dusky and a deep blackish-purple color. I almost screamed! It went away after a few minutes of walking around, though. The cure for ET is a bone marrow transplant? Wow! People have been asking me if that's what I need and I wasn't sure, so I've just been telling them, "As a last resort". Quite a disease we've gotten!! I am very thankful for my husband's insurance and his flex plan. If I'm able to get on SSDI, I'll be eligible for Medicare after 2 years. Even with insurance, my co-pay for my medications is $155.00 per month. When I think of the other things I could be doing with that money..... But I shouldn't complain. Other people have things so much worse! I'll take what's given to me and deal with it, I guess. I'm starting to get a little more energy back and I'm much less dizzy. I spent Wednesday night sitting up with nausea and acid reflux that was horrible! Zantac didn't bring any relief at all. It's settling down now. I know I need to eat better, but I have no appetite. Heartburn and acid reflux are listed as symptoms of ET, but I think the multiple vitamin and aspirin aren't doing my stomach any favors, either. I think the chemo is all out of my system by now. I hope my count isn't too high when I go next month, because I'm seriously thinking about taking my chances without Hydrea. Such decisions. Keep the faith that better days are coming! Sasha1 Fri, 12 May 2006 00:00:00 GMT First off me name is Maura in Gaelic or Mary in English which I only started to use in USA. Well MD Anderson called and said they have accepted me after I faxed them all my tests. They wanted me today but I have to change my Insurance to Medicare first. They might only offer me Hydrea but I will go with all kind of questions for them to answer.So I probably will be seeing someone there around the First of the month..I will make my appt. on Monday as soon as I know when I will be back to Medicare. Good new and bad as they can see from all my tests that it defititely ET. Sasha thank you for all your advice..I appreciate it. Nice to have a nurse on board, sorry it has to be you though. I am patiently waiting for the Doctors office to call me with the new count. I was hoping it would be today. Happy Mothers Day to you all Maura Maura Fri, 12 May 2006 00:00:00 GMT Hi all - I can't believe all that has been going on since our computer crashed! I missed you! I just read all your posts and want to catch up. Sasha how are you feeling now that you are off Hydrea? Are you still tired? Do you have any other side effects now? Do you feel better? I sure wish I could take a break from it. Maura, I am so excited that you got into MDA - they are the best in the world. I am hoping that you will get good answers for all your questions and pass on what you learn to us. I don't have much faith in my doctor's knowledge or ability as he has never answered my questions about his experience with ET. Our computer "crashed" and we spent a week or two trying to fix it and found out it was actually cheaper to just buy a new one that is faster and better anyway. My brother-in-law helped us get it all together. Then my sister came for a quick visit - she lives in Mexico so it really uplifted my spirits. It was amazing what energy I had. I was thinking that maybe I've been depressed because I just was diagnosed at the end of February and all. It sure is possible. I am just too young to deal with this dis-ease!! Anyway I think that my energy levels just go up and down all the time now. Some days are good and others aren't. Its a big adjustment. It sure helps, though, to be able to share ideas and information with all of you. I would really feel lost with out you!! I want to put my two cents in about faith healers - I really believe that the mind helps/hinders us in our life. Faith is all we have and if ET isn't a test of our faith, then what is??? We have a family friend who had a bone marrow transplant for leukemia. Now, 4 years later, he has problems with cataracts and COPA which is a degenerative lung disease that eventually he'll have to be on oxygen. So it may "cure" ET but the long term effect on your body may be worse. Although the MDA website and the City of Hope website both say there are no age limits on bone marrow transplants, my doctor told me I'm not eligible because of my age. One thing about SSI disability - you just have to keep filing appeals. I took their training when I worked for the state of Arizona (long story)and they have a huge book of occupations and they tell their claims analysts to find something in there for everyone. Might be worm farmer or something equally as ridiculous. So hang in there and keep appealing. They deny everything to start with and over 1/2 don't appeal. Once they OK it, they back date it to your original file date anyway. OK, sorry this is so long. I wish we had our own board for just ET stuff because I had a hard time finding this thread when we finally got back online. All my bookmarks were lost! take care my friends Barbara Barbara2m Fri, 12 May 2006 00:00:00 GMT I don't wake up with the legs so much as noticing them when I first lay down and if I am sitting quietly - like right now I can feel it. It doesn't really interrupt my sleep, though. I have always been very sensitive to touch - can't eat peaches unless someone else peels them, can't eat grapes unless they are in a bowl of water, can't sleep if my feet are covered. The last few years I have been using a flannel sheet - much laundered so very, very soft, as my blanket - winter or summer. I hope you got a response in time - didn't read the rest of the messages to see if you posted one. I had no idea there was any kind of a cure for ET. Not that bone marrow transplant seems viable. Even though for the most part I have been feeling better, I have been depressing myself thinking I have this for the rest of my life. Genessa Sun, 14 May 2006 00:00:00 GMT I try to keep tellng myself what you seem to be telling yourself - about not complaining because others have it worse. I am so happy that the hydra doesn't seem to be giving me any side effects and I have been getting my energy back - but not for two days in a row! However, I have little to no nausea (sp???) and feel like such a whine baby moaning about the problems I do have. Genessa Sun, 14 May 2006 00:00:00 GMT Hi Maura, Having grown up with a few Maura's and Maureen's around, I guess I kind of always knew what Maura meant. It is a beautiful name. I am happy that MD Anderson responded to you in time for you to change your coverage. I just received my first "mail-order" package of hydra and go back to the hemotologist on Tuesday. I'm very curious what my numbers will be. Genessa Sun, 14 May 2006 00:00:00 GMT Hi! I'm Genessa, or Agnes (my "real" name, but I still haven't grown into it - and I'm way past the age I should have). I read all the posts in this thread when I first found the link - I don't even remember where. I tried to find it one day when my favorites was gone and couldn't! I was diagnosed a couple of years ago, but was asymptomatic. When my internist told me to go back to the hemotologist after about a 6 month break, I didn't make an appointment. Then I had a series of illnesses and the loss of a very dear friend under very traumatic circumstances. Well, long story short, I was ready to ask dr for recommendation for a psychologist or psychiatrist because I thought I was on my way to being clinically depressed. Completely, physically and mentally wiped out. No enthusiasm for anything - just plodding along. DH had made me an appt with my internist (I don't know why - and made me go an get blood work done the week ahead of time) and my platelet count had gone from 600's to 900's in 3 months or so. She put me on hydra and I made an appt with hemo right away. Since being on hydra, I am finally regaining some of my energy and enthusiasm. Some good days, some half good days, no completely bad days, anyway. I go back to hemo on Tuesday and I was hoping he'd cut hydra in half, but don't think so, yet. I am truly grateful for finding this board, though. Best thoughts to everyone! Genessa Sun, 14 May 2006 00:00:00 GMT Hi! How many mg of Hydrea are you taking? I'm on 500mg and the only side effect I have is fatigue. I guess I'm lucky I don't have burning legs. When I read about how you describe them, I'm glad I don't have to deal with them. I can relate to being physically/mentally wiped out though. I think its really important to keep a positive outlook. Aren't you glad your DH made you that appt? At least he is taking care of you!! I have to say that I am so impressed that you go walking with him still. There is no way that I could do that - I would be totally wiped out. Anyway, be sure to let us know what your hemo says on Tues. take care Barbara Barbara2m Sun, 14 May 2006 00:00:00 GMT Hi Barbara, I'm taking 500 mg 2 times a day, at least until Tuesday. I was extremely fatigued before taking the hydra, but have been less fatigued after taking it. I'm thinking it was the platelets making me so fatigued, but if they continue to fall, I guess I'll find out. I was doing great when they were in the 400s. Since I saw him 3 weeks ago, I have had some good days. I had one day where I "spring cleaned" the house - really cleaning. Another when I managed to walk around the park 3 times. Most days, though, I'm dragging with 2 times and I need to start bringing reading material or something to keep my mind occupied while he walks around more and I sit on the bench. He needs (and is up to) going around more times and right now I just can't. I know how fortunate I am to have no symptoms (yet) from the hydra. The burning legs I actually had been getting for at least a year (I thought it was the start of menopause), way before I even knew about hydra. Ironically, one of the things that has been bothering me the most is being too tired to read. I am normally a voracious reader - 5 or more books (depending on the length) a week - in my spare time. Since January, I could probably count the number of books I've read - I've been reading one book for the last month. Genessa Sun, 14 May 2006 00:00:00 GMT Hi Agnes - wow 1,000mg a day would probably make me sleep all the time! I'm assuming that the Hydrea is making me so exhausted all the time. I'm a reader too! In fact about a year ago I got a part time job at the library. Its like a dream job. Only 10-12 hrs/week and all those books!! I hate to admit that I have slowed down in my reading too.I've noticed my skin and nails are getting real dry. Have you? I'm sure its from the Hydrea. I've been trying various brands of lotion to see what works best. I even have one in my car so when I'm doing errands I can use some hand creme. Small thing and I'm not complaining. Just something I've noticed since starting this journey. I'm hoping that your numbers have come down. Be sure to let us know! Barbara Barbara2m Mon, 15 May 2006 00:00:00 GMT My dream job would be to own a bookstore and manage (boss around doesn't sound professional enough) several employees and I'd be able to lounge around on a long sofa and read all day :) . I've always had dry skin and brittle nails, so I haven't noticed a difference there. My lips and mouth are always dry, though. I try to keep hydrated and I've been going through a ton of chap stick. I am lucky in that I haven't had this much energy since sometime in the fall. Also, my hair is falling out at a much slower rate. Before hydra, it was coming out about 100 strands or so every two days. Now, it's arund 5 or 6. Since I'm a world class award winning worrier, though, I am imagining all sorts of side effects to come. Genessa Genessa Mon, 15 May 2006 00:00:00 GMT Amazing to hear about your bookstore dream! My dream was to have a bookstore with comfy chairs and a small sandwich counter in the back! I figured I could sit around and read all day too!! :) Barbara Barbara2m Tue, 16 May 2006 00:00:00 GMT Barbara so good to see you are still onboard. Well I got my latest test count and it is now 742 up 50 points in three months. MD Anderson said to call on the first of June and they will schedule me for an evaluation within a week. I know I will have to have a bone marrow bioposy for them so have any of you had one awake? My regular Dr. said not to take it if I wont be knocked out? I was hoping my count might have gone down. I used to exercise to Leslie Sansone's walk away the pounds with tension bands every morning. Then I thought maybe it is making my count go up and last night reading Web MD it said walking helps to offset blood clots so I am back on it again and feel better for my 30 minute work out this AM. My triciglicerites were 211 and my DR wants me on lipitor (even though the total is 190) as high tricig. can cause blood clots. Does anyone have any input on that?Anyone on any Statin Drug?? I am afraid to take them with ET hopefully they are OK. I know MD Anderson will let me know but I have to wait a few weeks. I wish there was a site to tell us what drugs not to take!! Barbara are you just on 500 mg. per day? If I have no choice but to go on Hydrea I will refuse a higher dose. Actually I will ask to see about 250 dose. How can I go to England for 6 months. Plan was 6 there and winter here. Anyone got any ideas? So good to have you all to "talk" to Bye and GOD Bless Maura Maura Tue, 16 May 2006 00:00:00 GMT I had a bone marrow biopsy and I went into it very nervous but I had read something in a reference book at the library that explained the entire procedure so I knew what to expect. The material said to be sure to have the doctor numb the area fully before he starts. Luckily my doctor did that. I didn't even get into a gown or anything - I just pulled my jeans down alittle and my husband stayed with the the whole time until the doctor was ready. Then they asked him to leave. They also gave me some demoral to relax me (I have to admit I was nervous). Anyway, he did both a aspiration and a biopsy that day which is two different needles but the lab treats them different. It took a very short time and really I didn't feel anything but alittle pressure when he put the needle into the bone. He said I did very well. I did go home and sleep off the medication and was alittle sore the next day. But all in all, it wasn't too bad. But I decided not to approach the deal with fear because then I would've tensed up and that would have made it worse. I kept telling myself to just breathe. Today I went to the dentist and he had to drill out a filling and even though he gave me novacaine, it was way worse than the bone marrow thing. I think because I had to hear the drill. I really got tense. So let us know what you decide. If you want, I can give you the name of the book that had the information about it. I'd offer to send it to you but I know that they would edit it out. I take Lipitor and because of high cholestoral and my hemo and GP said it doesn't react with Hydrea. As far as I've been told, 500mg of Hydrea is the lowest dose available in the USA. I found 250mg online at a Canadian pharmacy but the pharmacist here said she can't order it. I'd like to take a smaller dose too. Really Maura, I think you'd be able to go there 6 mos every year once you get everything under control. That is something you can ask the dr at MDA. You are so lucky to have re-found your sweetheart -- don't let this stop you from being with him! I am really waiting to see what your impression of MDA is. take care my friend Barbara Barbara2m Tue, 16 May 2006 00:00:00 GMT Maura, I had a bone marrow biopsy done while I was awake - in fact, like Barbara, it was biopsy and aspiration. It was no where close to as uncomfortable as I had feared. I've been telling people that I'd take it over a root canal any day, but actually, now that I think of it, Barbara is right - it is less "tensing" than even a regular drilling with a novocaine needle. A little pinch from the shot, then some pressure, and I felt a little "pulling" sensation. The worst thing for me was I had my period and was so embarrassed and uncomfortable with a tampon. I brought a paperback with me and was reading it while I was waiting to "numb" up. The entire procedure was over quickly and I went back to work, although my "rear end" was sore for a couple of days. My cholesterol is slightly elevated, but my triglic are low, so the doc is keeping me off lipitor for now, although dh is on lipitor - his cholesterol is pretty high, triglic not high (althought they were originally). I pulled all trans-fats from his diet and his triglicerides dropped. We only use either olive oil or canola oil and don't use either a ton. We do use butter instead of margarine (most margarines have trans-fats) and try to not use anything prepackaged, prepared, processed, other than a very high fiber cereal. I had read about trans fats (anything that is hydrogenated or partially hydrogenated) and high triglicerides so that's why we tried it. I definitely think you'll be able to split England/here 6 months at a time. And, if they do prescribe hydra, maybe you'll be lucky like I've been. Genessa Genessa Tue, 16 May 2006 00:00:00 GMT my latest update. Went to hemotologist today and my platelets are up slightly, they had been around 614,000, now 637,000. He said that wasn't anything to worry about at this point. I had been hoping they would be significantly lower, but as long as I am feeling better - actually did laundry and cooked dinner and feel like doing other things - over this last few weeks, I am happy. My wbc count is now normal, iron normal, but on the low range. One interesting thing - I had been reading on another board about a gene mutation JAK2 (and something added after it) that someone was tested for. My hemo sent some of my blood out last time to see if I had the mutation. Apparently, if I have it straight, (should have written it down) 50% of the people with ET have the JAK2 mutation, 80% of people with polycemia vera have the mutation. So, if you have the JAK2 mutation, basically you have a "mpd". It is a recent discovery and not much research is being done on it, or has been done on it. The hemo felt that in the future, with further research, medicine/treatment might be "discovered" that specifically attacks the JAK2 mutation. He had told me that if I was positive for the mutation he was going to increase my hydrea. Since I'm negative for it, he's keeping me on it for at least another month at the current dosage. Genessa Tue, 16 May 2006 00:00:00 GMT Genessa - JAK2 sounds really interesting. I did a Google search and found this link that puts it in terms I can understand: http://www.mpdfoundation.org/interview.htm#07 I will definately ask my dr what he knows about it when I see him next. I write down my questions because when talking to him he is in such a hurry to leave that if I don't just keep talking he's out of the room fast! Maura, the drs at MDA would probably be on top of this one. Maybe you can see what they say about JAK2. Agnes, your count surprises me - why wouldn't it be dropping? Is the Hydrea working on other stuff before the platelets? Will you have to up the amount you take? When do you go back? I am glad you have more energy. Do you think that's because your counts are more in order? I am thinking that is why I have more energy some days now. I can actually do all my errands and pick up the kids and cook dinner some days. That is wonderful for me. Hope today is a good day for you! Barbara Barbara2m Wed, 17 May 2006 00:00:00 GMT I was surprised my counts didn't drop - I was envisioning in the 400s. The hemo had no answer to it, just wants to keep me on the hydra for one more month and see what will happen. I truly think that it is counts in the 600s that is making me feel better, have more energy. I cooked dinner last night, first time in a while. My wbc count did drop down to normal levels. I guess we'll see in a month. I was trying to keep a diary, but then stopped. I was doing a ton of reading last night, on JAK2 and that led me to other things. Very confusing, some of the articles, so technical, but then I start to feel like it's making sense. Most of the studies have such few people in them, it's almost difficult to know what to believe. Here's to cooking dinner! Agnes Genessa Wed, 17 May 2006 00:00:00 GMT Thank you both for your prompt answer to my questions. Indeed I have every intention of asking aboutJAK2 . If I have it what then?? I am glad to know I do not have to fear the bone marrow biopsy. Mt Oncologist wanted me on Hydrea before i went to England but I said no. If MDA only offers that to me and says i need to get on it I will ask how I can be monitered in UK. Medicare wont pay for anything outside USA just mexico and in Canada only if there is no way to get to a USA Hospital. I seem to be over the fatigue I had but my legs will keep me awake if I wake up..no way can I fall back again. I always used to. What count were all of you when you went on the chemo. I do intend to ask about radio active phosperous and interferon and another name I saw from UK..must look it up. My Oncologist said when the count gets to 600,000 it is ET. I wont go back to him as he knew i was taking Evista (never took hormones) and the side effect is blood clots so I figured he is no good. I found out myself. Too bad we all live so far from one another but this message board make me feel very close to you all. I am having a ball with my "friend" here just wish we were teenagers again. Wouldn't you know this Et had to happen and mess plans for us. We were to move to Ireland but that is now out of the question. The medical is free for seniors there and in England it is free for all and STINKS. The Dr's dont even want to give drugs let alone tests. No colonoscopy unless you have problems. My friend had prostate cancer four years ago and he had to wait 6 mos to be admitted to a Hospital for a bed. It is so full of people from OUTSIDE they have used up all the money for the English people who paid into it all their lives and the DR's get points for not giving drugs or tests. It is like pulling teeth for them. So if nothing else i am tied to USA for medical care. Maybe I might be one of the people with no problems but how do I know. I told you once that some woman went into the jeweller Store in Ny that my girl friend owns and told her she lowered her count with apple cider. I tried it and gagged but i will go to the health Store this week and get pills. Worth a try. it probably might thin the blood but not the platelet making..worth a try. Talk soon Maura Maura Wed, 17 May 2006 00:00:00 GMT Maura, my internist is the one who put me on the hydrea. The hemotologist said he wouldn't have put me on it until my counts were much higher - mine were in the 900s then. But, since I had headaches he would keep me on it, seeing as it was lowering the platelets. Neither doctor seemed to think the burning legs were anything. AS for the JAK2 mutation, the hemo told me that if I had the mutation, he was going to increase the hydrea. Since I don't, he was leaving it the same. I went onto all kinds of web sites last night. Wrote the info down in a little notebook I had in my bag, now it's gone - I hope it's at work. What I remember is Professor Anthony Green co-wrote an article in a journal of hemotology (I think). If you type in a search of management of essential thrombocythemia into a search engine, one of the results is asheducation something. I tried linking it, but can't figure out how. The name of the article is Management of polycythemia vera and essential thrombocythemia. It explains some and has other links. I had forgotten about the medical insurance part. You would probably somehow need to be checked, at least your platelet counts. My hemo, right now, went from 2-3 weeks, to 4 weeks. The old hemo said I didn't have to go again until my internist sent me. Genessa Wed, 17 May 2006 00:00:00 GMT Good Morning to you all. I spent hours last night reading up on JAK2 and what if one of us has it? What then? Does that make it worse for us? Kind of confusing. Genessa what kind of a test did you have for it..just a blood test? Seems to me your first Doctor didn't know much about ET and was pawning you off on your Internest. Was he or she an Oncologist? I think mine knew very little also so hopefully I will get some answers at MDA when I go. What happens a an evaluation.I wonder if they do their tests before they give me an answer or just read all the results from my old tests. My Dr said I did not need a bone marrow biopsy by process of elimination I had ET but after Sasha telling about her platelets staying inside the bone marrow I think he was wrong. I read somewhere in the net the MDA was working with some Hospital in London so maybe they would set up for me to be monitered. But what about Insurance?? What a mess. On the brighter side we have lovely weather here since I came back and it lifts my spirit. Have a good day all my ET friends Maura Maura Thu, 18 May 2006 00:00:00 GMT The JAK2 test was just a blood test. I can't remember if the new hemo told me he was doing it or not, they just used some of the blood they had drawn for my regular counts that first visit. The research on it is so new, and the number of people tested so small, I don't think anyone knows for sure what it means right now. The hemo did tell me that the pinpointing of the JAK2 gene would encourage researchers to target the JAK2 mutation in the hopes of controlling the platelets, so instead of hydroxyurea they might develop more specific medication. I'm not sure if the first dr was an oncologist or what his specific specialty is (or was - he is now retired). He seemed knowledgeable, but I had gotten the feeling that my disorder wasn't interesting enough for him, especially sicne the internist had sent me for all the preliminary elimination tests. When my platelets rose very slowly over the first year, he told me not to come back until the internist told me I needed to see him again. I was speaking to someone on another forum and she goes to get monitored once every 3 months. Maybe, if you timed it right, you would be able to only have to get monitored once a year in London and so if you had to pay out of pocket, hopefully it wouldn't be too much? I'm glad you're enjoying the good weather. What part of Texas are you in? It was Texas, wasn't it? My daughter lived in Austin for 2 years, beautiful country. Genessa Thu, 18 May 2006 00:00:00 GMT Thanks for a quick reply. I live in the suburbs of Houston about 2 1/2 hours from Austin and yes it is beautiful there. I am from Ireland..moved to Long Island NY when 17 and my husband was transferred here. He died at age 46 from lung cancer and I waited too long to go back to NY and property fell here and rose in LI like crazy all in 12 months. Then the kids married etc. so I stayed on..couldnt possible afford LI taxes now. Maybe I would have married again to a rich man??? But then I wouldn't have my childhood sweetheart. Do you get any info. from the other site you are in? I just don't bother to look any further..maybe I should. My Hematologist said he likes to start Hydrea at 600 count and I said no way. Bye for now Maura Maura Thu, 18 May 2006 00:00:00 GMT yeah, you're right, the property taxes in NY are so high! We live in Brooklyn and per sq. ft. our taxes are probably higher, but almost no one has the square footage here that they have in Nassau or Suffolk. And housing seems so reasonable in Texas, at least compared to here. The other site has some info, but not as much. The best thing (for me) was the mention of this site. It is an ezboard community - mejthrombocythaemia. If you can't find it if you are able to e-mail me your e-mail address I'm --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. There aren't that many people who write, or at least not as much as I read. Maura Thu, 18 May 2006 00:00:00 GMT yeah, you're right, the property taxes in NY are so high! We live in Brooklyn and per sq. ft. our taxes are probably higher, but almost no one has the square footage here that they have in Nassau or Suffolk. And housing seems so reasonable in Texas, at least compared to here. The other site has some info, but not as much. The best thing (for me) was the mention of this site. It is an ezboard community - mejthrombocythaemia. If you can't find it if you are able to e-mail me your e-mail address I'm --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- There aren't that many people who write, or at least not as much as I read. Genessa Thu, 18 May 2006 00:00:00 GMT I was reading all the messages and saw two where people mentioned getting notified if you received a response. There is a box at the bottom of the reply screen that you can click if you to be notified when you get a response. It isn't the default, though. You have to remember to click it every time. (Or at least I do). Agnes Genessa Thu, 18 May 2006 00:00:00 GMT Hey, how come I don't always know when there is a post on this board? I looked this morning and I missed about 4 posts yesterday! Anyway, I hope we can get each other's addresses and just keep in touch by e-mail. Mine 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 ----. I thought they edited them out on these boards but yours Agnes must have slipped by them. I hope mine does too! The information on the board you found Agnes is great - I spent some time there yesterday reading it all. It seems like they (in UK) have more information on ET than we are given here by our drs. My dr didn't give me anything - I've found it all on the internet myself and by talking with you two. I feel like its the blind leading the blind. But at least we've found each other! Have a good day today! Barbara Barbara2m Fri, 19 May 2006 00:00:00 GMT You're right, Barbara, about the blind leading the blind. I get the feeling sometimes, when I'm talking to my dr., that I know as much as he does - except he says it fancier! Although he doesn't try to rush me and does answer questions and when I mention I've been reading he doesn't discourage me. I'm just amazed, the more I learn, that my internist knew so much! Genessa Fri, 19 May 2006 00:00:00 GMT Sasha if you are wondering what happened to us look back on one of these messages and you will see Barbaras email address..all three of us are now doing private emails. So contact her and you will be added to all the emails. Hope you are doing o'k. I get to go to MDA somethime the first week in June. Maura Tue, 23 May 2006 00:00:00 GMT Hello, I left a message for you all and I cannot find it. And you are not posting. What happened? J Jeileen Sun, 28 May 2006 00:00:00 GMT Am so glad to find you. I discovered I had elevated platelets last June 2005. Was so shocked and had never heard of it before. Have been thru many tests and blood draws etc. even to the Mayo Clinic. and finally found someone one this board who has heard of ET. Now you are gone and I cannot find anyone's email. Wish you all would return. Jeileen Sun, 28 May 2006 00:00:00 GMT I have found a different site on the web with many more people on it and a huge archive of "older" posts - I haven't even gotten past this May and the "ends" of April. It is MPD --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- I didn't put that in as a link, if you can't find it there, try putting Myeloproliferative Disease Support List in your search engine. or if you are a member of aol - --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- support. There is another site I found I have been visiting, too - fmejthrombocythaemia community. It is very frustrating to find a place and then find it so inactive. What are your counts? Are you on any meds? Genessa Mon, 29 May 2006 00:00:00 GMT Yes I waited until my counts were 1 m and then went on Hydrea, first, 1000 mg, then 1500mg and back down to finally 500. After 3 and a half months, my platelets went to 107,000 and all the other counts went out of whack due to the drug. I had anemia from too much drug and stopped the drug altogether. My bone marrow was suppressed and it took about 5 weeks for counts to return to near normal.While on the drug, I had sores in my mouth. As soon as one would clear up, I had another. Finally had them on my lips as well. My first hematologist wanted me to go on interferron. Went to another hematologist, younger and less agressive and advised me to wait. Did take 81 mg aspirin every day before and after going on the drug. Also was very tired when waking up. Pushed myself to get going and exercised often and would feel much better. I finally got up nerve to write about me and you had all left by then. I am now seeing my PCP who is monitoring my blood counts every 10 days. No drug and no aspirin. Don't know where I am going from here. The unknown is so scary!!! Thanks so much for your reply. Jeileen Mon, 29 May 2006 00:00:00 GMT wow, what a crazy run on hydra! I'm very lucky, I am experiencing no side effects, other than feeling 40 times better and not losing any more hair...not what I'd call bad side effects. I had counts in the 400s for years and felt great, so I'm hoping that I'll be able to reduce the hydra to 500 in the future and maybe stop it for a year or more. When my counts started going over 600, I started both getting sick and feeling so exhausted, completely fatigued, I was beginning to think I was going through a severe depression. Forced myself to get up, forced myself to shower, to dress, to do things fun. It wasn't until about a week and a half of hydra, that I got some energy back. DH & I were walking about 3 1/2 miles in less than an hour. Now, we're walking a little less than 2 miles in an hour. I have had a wonderful, slightly energetic weekend so I'm hopeful to only get better. I'm not thrilled with taking any kind of medication, but if it helps me to want to get through my day - I'll do it. I also take an aspirin, but in my house, aspirin was the answer to everything, so I forget to even count it. Take care! Genessa Mon, 29 May 2006 00:00:00 GMT The only symptom I experienced was extremely severe heachaches that lasted only seconds. I had these offf and on for a few years, thinking it might be due to contacts, or whatever, coming on out of the blue. Then I went to a new PCP on a routine visit last summer and he ordered a CBC. For twenty years I had had annual blood work but never once had my platelets been tested. At the time, my platelets were 615,000. As the platelets increased, the headaches became more frequent. As the drug lowered the platelets, I had fewer headaches. How long have you been on HU? After reading about HU, I was so stressed out to take the drug. I did very well on it until my bone marrow went to sleep. My Dr. suggests that I will have to go back on it but no way to know when that will be. Sooo am enjoying feeling more like myself again. And taking one day at a time. You are the first I have talked to who has this. Have you been told that you may not need HU for some time?? Jeileen Mon, 29 May 2006 00:00:00 GMT Joan, actually, I haven't been on it that long - since mid-April. I was diagnosed 2 years ago, but the hemo just wanted to observe me until my plate