Thrombocythemia

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

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.

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

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

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

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

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

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

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!

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