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    Old 05-05-2007, 09:38 AM   #1
    Amy 333
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    Essential Thrombocytosis

    Hi my name is Amy i am 27yrs old. Just wanted to start a support thread for all those with this MPD.
    Was diagnosed with ET a few years ago though my platelets have been on the increase since i was 16yrs old.
    Started treatment when i reach thw 1.2 million count. I am being treated with hydroxyurea and aspirin. This has kept my condition under control.I have no side effects neither from the tretment nor from my condition.
    I was also diagnosed with hypothyroidism in March.

    I have now stopped the hydrea since i am trying to get pregnant. Though ever so scared coz i know that it won t be easy with this condition.
    There were quite a few people with my same condition and in my same circumstances though they all seem to have dissappeared.
    Looking forward to getting to know some new friends .......


    AMy

     
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    Old 05-15-2007, 11:02 AM   #2
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    Re: Essential Thrombocytosis

    Where have all the people with ET gone these days???

    Amy

     
    Old 05-18-2007, 11:19 AM   #3
    angelaq
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    Smile Re: Essential Thrombocytosis

    Hi Amy,
    I am a first time poster here, but I wanted to discuss what I have been experiencing these last few months. I went to see an internal med dr back in Feb of 07 because of extreme fatigue. That was where I learned about my elevated platelet count...it was 1.2 mil. She sent me to a hematologist who has been monitoring me every two weeks and my count did not go down so he did a bone marrow biopsy on May 10th. He is looking to dx me with ET but not put me on meds since my medical history is pretty good. He just wants to monitor my counts. I am most concerned about how tired I am, and the lack of energy I have. Is this something you live with on a daily basis?

     
    Old 05-19-2007, 08:47 AM   #4
    Amy 333
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    Re: Essential Thrombocytosis

    Hi Angelaq

    I am sorry that you got recently diagnosed with ET. It does take a while to sink in doesn t it?
    If i may ask how old are you? Do you have children?
    The story is a bit different for me coz i was on meds up to 2 weeks ago when my count was 400 000. However when my count was 1.2 million i had no symptoms at all. I don tknow if my count would have increased or not coz that s when i started treatment.
    I am healthy too but my heamo insisted on the treatment.
    Did you get a general check up done ? Maybe you are tired coz of other reasons. Or maybe you are stressed due to other matters.

    Something which you can try out or ideally discuss with you heamo is VIT E capsules. I have been taking these for a few months and i think they help. Vit E prevents coagulation of blood.

    Wishing you all the best. Here if you need support.

    AMy

     
    Old 05-20-2007, 08:10 PM   #5
    Karenann12342
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    Re: Essential Thrombocytosis

    Hi, I was dx two yrs ago when I was 58 I was told that I have had it for quite a while, but the dr. I was going to see never kept a check on my blood work. After the dx so many things made sense with all the symptoms I had. I was very tired and had pain in my fingers and arm. A few of my fingers were actual purple but that went away. I am on agrilyn my platlets so far stay in the high 400's to low 500's I just started taking the omega 3 fish oil caps. I would like to see if they help with the blood and joint and muscle pain I have. Just thought I would try. I try not to think about the ET too often cause most of the time I feel fine. Take care

     
    Old 05-22-2007, 02:18 AM   #6
    Amy 333
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    Re: Essential Thrombocytosis

    Hi Karenann

    Do you have any side effects due to agrilyn?Are there any long term effects to this medication? Do you know why your dr decided on this treatment and not something else.? Just curious on criteria they use overseas.

    I completely agree with you that we should not give much importance to the problem. However on the other hand due to my wish to have kids i need very close monitoring . So for the time being my life has to go around ET ......and i hate it.

    Wishing you all the best.

    AMy

     
    Old 05-22-2007, 08:35 PM   #7
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    Re: Essential Thrombocytosis

    Hi Amy, I'm sure its harder knowing at a younger age. My children are all grown. My Doc gave me Hydroxyurea last year for about one month. He said it was the prefered drug, but I had so many mouth sores from it and had a constant metalic taste. So, he put me back on agrilyn. The hydroxy did bring my counts down really quick and they stayed down since then. But because of my age, symptoms and high blood pressure, he wants me to stay on the meds. They don't seem to bother me. I know some people had a pounding rapid heart beat and headache. My headaches left quickly. I wish you luck with having a family. I had 5 pregnancies and one miscarriage in my late 20s. God Bless, Karen

     
    Old 05-23-2007, 05:54 AM   #8
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    Re: Essential Thrombocytosis

    Amy333,
    I am 40 years old and have 3 children. As soon as I was told about my elevated platelets it jogged a memory of a problem I had during my pregnancy with my last child. I was 35 when I got pregnant and during a routine checkup my ob-gyn discovered that I had a high platelet count. She said she just wanted to monitor it for the time being. I never had any problems in the past so I didn't question her and we pretty much didn't even discuss it. I delivered my child full term with no complications but he did have a low birth weight (6lbs) compared to my other 2. When I called to find out what my counts were so I could take it to my hemo dr. I found out the first one was 659,000 and then 683,000 the next month, then 633,000 then 609,000 then 489,000 and 465,000. So they went down pretty much every month. My OB dr went on an emergency leave of absence 1 month before I delivered so there were no other blood tests done. I am inclined to think that I had this disorder back in 2002 and it makes sense now as to why I had a harder time healing and I was way more tired. I would love to have known what my count was 1 month after delivery but with my dr gone, there was no continuity of care so the drs didn't follow up. I have read posts on this board that other woman had counts to decrease as well.

    I have not been dx'd yet, I go tomorrow for the biopsy results so I am keeping my hopes high. My counts have been well over a million since this whole process started and my dr has told me many times that he would not put me on any meds until the counts go up to 1.5...I just wonder why your dr insists on medication and mine doesn't. You are very young and haven't indicated that you are high risk. I will post on Thurs or Fri after I find out what he says. And thanks so much for your response...this has been very difficult to accept since I am always trying to find out the reason I have developed this disorder.

     
    Old 05-24-2007, 11:42 AM   #9
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    Re: Essential Thrombocytosis

    My biopsy results rulled out CML 100% so my dr says he is 50% convinced that I have ET. He did a ferratin (sp?) check and will call me tomorrow about the results to see what my iron level is. My platelet count was still 1.2 mil so he just wants to monitor monthly rather than putting me on the chemo drugs. He also offered to send me to a dr who specializes in ET. But I guess for now I'm OK with seeing him monthly and watching my counts. It's just wierd that most everyone else is being put on meds and I am not.

     
    Old 05-26-2007, 09:57 AM   #10
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    Re: Essential Thrombocytosis

    Karen

    thanks for your input. Wow 5 pregnancies. . . congratulations.
    I had one m/c too. It was our 1st attempt at trying. Unfortunetly i haven t gotten pregnant since. Iwas diagnosed with hypothyroid so they think that s the cause. Hopefully it will happen soon. wishing you akll the best too.

    Angelaq

    Its great news that CML was ruled out. Did you get the iron results yet?
    Dont know why my dr insists on the meds. At the moment its my dilemma . I want to get pregnant and have stopped them 1 month ago. However just had my HCG done which confirmed i wasn t lucky this month. Don tknow if i should start taking them again or not. My heamo says that i should continue taking them and only stop once pregnancy is confirmed but i don t agree. They are cyto toxic and i don t want to take the risk. It sscary coz i am the only young patient with this condition on the island where i live. So i fel they kind of experiment on me.Enough ranting.
    Re your baby being of low birth weight it svery common with moms who have ET.
    If you are healthy and are being closely monitored i think its ok. Did he suggest aspirin to thin out the blood. That swhat i am taking at the momemt. Just the aspirin.

    Just wanted to wish you both all the best. Here if you need support.

    Amy

     
    Old 05-29-2007, 07:13 PM   #11
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    Re: Essential Thrombocytosis

    I was wondering if anyone with ET has a problem being out in the heat/humidity. It seems lately I have been having a hard time. My face gets red and itch and my legs get red, itchy and a little puffy ( not bad). I know real hot showers bother me, but I feel like I am becoming a real sissy. Just wondering, Thanks

     
    Old 05-30-2007, 08:00 AM   #12
    Amy 333
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    Re: Essential Thrombocytosis

    Karen

    I haven t experienced anything with heat and humidity. However my dr has told me to spend much time in the sun.
    May it be some form of allergy?

    Amy

     
    Old 06-01-2007, 10:43 AM   #13
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    Re: Essential Thrombocytosis

    You were right Amy, I had an appointment with the Dr. yesterday and it seems at my age I am getting allergies, I guess there is alot out there this time of the year. Thanks

     
    Old 06-01-2007, 10:57 AM   #14
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    Re: Essential Thrombocytosis

    Glad you got it all sorted out. Take care. Keep in touch.

    Amy

     
    Old 06-05-2007, 08:10 PM   #15
    And_On_We_Go
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    Re: Essential Thrombocytosis

    Amy,

    March of 06 I went to see my Dr. because of dizzy spells, panic attacks and even nausea when driving. At then 30, I was found for the first time in my life to have high blood pressure. The meds have since made things great. Unfortuneatly, at the same visit, my CBC came back with platlets in the high 600k. My reg. Dr. started the process to have me see a Hemo., and getting no answers from my Dr., I started the freak the heck out process. Most things online weren't to great if you know what I mean. Things even got better two months down the road when I finally got in to see the specialist and they told me their was little to be known about ET. GREAT!!!Had the hole bone marrow deal done. I've been holding at 730k approx. and having my blood checked every two months. I asked the same question you did, when I first found this site around May of 06.......Where have all the "long" timers gone. Everyone on the site seemed pretty fresh. From what I've read, some people with 500k have had horrible problems and some with 1.2m have had little or none. I myself with the exception of stairs being tiring, haven't had any major set backs. Life just goes on. And thats why I think most of the "had it for ever" people seem to disappear. I some times freak out that as I get older I might have clot or something but in the mean time life just keeps on trucking. Some people seem to have it bad and I can't help but wonder how our own personal health or genes affects the disease. It would be nice if there was some kind of study. I think we would all participate. I've had the disease for at least 5 years based on previous blood tests where previous doctors found no need for concern. I was even given Life Insurance with out a second glance. I've probly had the disease for at least 10 years, looking back at past "ailments" or "symptoms." I personaly haven't hit the million mark yet, and from what I've read, most people don't get any long term good results from the available drugs. Think I'll ride it out. One thing I noticed at the Cancer Center: Theres a lot of other people that have life a lot worse off. The percentages for a normal life are pretty good for most of us. I'll check back as life goes on and maybe others will too. You know, to keep your original question from being asked.

     
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