Essential Thrombocytosis

i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personaly

Hi, I also was diagnosed the same as you last year, my white cells and plateles both are on the hihg side but below 1million, therefore the only treatment I am on is Asprin,have decided not to take Hydroxyurea, may I suggest you do Yoga, espicaly breathing excerside it helps, and plenty of vegetable juices, and blance diet.my email is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if you wish to write to me.

I am changing drs to one closer to where i live . The specialist told me that i will have to go on hydrea but i was not at the treatment level. I feel like if i am going to have to go on it i want to get it over with. I am honestly tired of all the tests lol . I know that another dr means more tests. But i needed to find someone that is closer the 2 hour drive one way was getting to me .

hi Susan,

try to read real stories on this site under essential thrombocythemia.... me too got this rare disease... but with the help of information and this site makes me hoping that we can have an answer or we can manage this kind of disease....

Attitude counts a lot!

rocky2005

Hi - I am in the process of being diagnosed with ET and the doctor recommended hydroxyurea. I am wondering why you decided not to try it? I am definately interested in diet, yoga and other ways of dealing with this.
Also, can you give me some ideas of what I need to ask about treatment? This is all so new, I just don't know where to start.
thank you! Glad this message board is here!

Hi

If you are a low risk patient maybe OK. I was diagnosed after simultaneous heart attack and stroke and so doing what you are doing is not an option- Hydroxycarbamide and aspirin for me, forever!

Hi I too have Thrombocytosis. I found out when I went into have my pre-op blood work done for breast cancer. We had to put off my surgery for a few weeks while I took hydrea/hydroxyurea 2000mg a day to get it down to 600. They did a bone marrow biopsy while I was knocked out the day of surgery but didn't get what they wanted from it (whatever that means). They want to do it again but I don't want to do it unless I HAVE to. I had radiation for 6 weeks and my ptl went down to 350 with that, plus the hydrea. Did you have a bone marrow biopsy? How painful was it? Are you on medication yet? For how long? Is this forever? Like you, I wish I knew more about this and who I should be seeing. I now go to my Oncologist should I be seeing a blood doctor? It is nice to know there are more of us out there. PS after requesting my blood work reports for the past 4 years I found that i have had this for at least that long untreated. My GP never said anyting to me.

Maryann:
I have spent hours on the internet and in various medical data bases researching ET. I think that probably your GP just isn't aware of ET and that's why he didn't catch it by your blood tests. From what I understand, the bone marrow will tell them where you are in the disease - also rule out other potential disease. I had mine two weeks ago and I tried to approach it without fear. I found out from a reference book at the library exactly how it is done. My sister told me to remember to breathe and that really helped. The doctor gave me something to calm my nerves and then something to numb the spot. I can honestly say that it didn't hurt at all because I wasn't fearful. There was bruising at the site and alittle sore the next day. But that being said - you have your cancer to deal with also. I hope you have a good support system that you can rely on and you aren't facing this alone.
The hardest part of ET for me is my doctor can't really answer all my questions. Also there is no one I can talk to about it here as it is so rare. I plan to start a support group for the upstate area of South Carolina so that we can help each other. Are you a part of a breast cancer support group?
Please keep posting here and let us know how you are doing.

hi maryanne,

barbara was right regarding the support of people around you, specially when you will undergo bone marrow aspiration. Last August 2005, i had my bone marrow aspiration, my friends and sister were there to witness it.. i am calm at first, but while on the process, i had fear...for me its painful but according to my dr. as soon as he left the room, pain should be gone.. i stayed in the hospital overnight and go home the next day but according to my dr. it can be done in an outpatient cases. Once in for all you should undergo it so that you will not fear whatever diseases that strikes you.. and attitudes count a lots... now im on my 3rd remission... meaning my platelets got high after 3 weeks and i take hydrea once in every 2 days, to lower it down...

just this month i am scheduled to have my annual physical check up to check again my systems, hopely have not been affected by hydrea... hoping for a good results.

regards
rocky

Hi Barb,
Thanks so much for the info. It looks like I have ET and hydrea is part of my life now. I am taking 2500mg a day now to get my numbers down. It makes me very tired not sleepy just wacked out but I push on. I am having problems with swelling in my legs and feet. I noticed it after breast surgery and got worse after flying to Arizona for a vacation. I am going for an ultra sound to make sure no clots are there and will get some elastic stockings for the future. Someone told me that I should not be flying with this conditon, have you heard anyting on this? I have no idea what I (we) should or should not be doing with this conditon do you? So many questions so little answears..........It is nice to know your not alone with this thanks again for all the info.