Recently Diagnosed With Essential Thrombocytosis

I was recently diagnosed with essential thrombocytosis, I have high blood platelet count, I have taken a whole lot of blood tests and sonograms, ct scans, ekg's, I am on asprin 325mg , and tomarrow I have to go and for a flabotomy, then once a week flabotomies until my number's come down and possibly have to take a chemo pill and was wondering if anyone is doing this and what medicine they have had good luck with, Thank You, and good luck to all, I would love to talk to anyone who needs a friend.

I am 33 and was diagnosed with ET in November
2005 after a bone marrow biopsy and many months of blood tests.  At first
I was not on any medications, but had to go in for blood work about once a
month.  My doctor didn't want to treat me unless I was showing
symptoms.  My platelets began to near 1 million about February 2006. 
It was at this point I was beginning to experience a lot of ocular
migraines....seeing a lot of lights and areas blurred out.  This happened
10 times a day for 4 days in a row.  I called my doctor and was scheduled
for an MRI on my brain....a month later of course.  The doctor decided to
start me on Hydroxyurea 500 mg daily.  My MRI didn't show any sign of
bleeding or a clot, so that was good.  The doctor wanted me to have blood
work done once a week to keep track of how the Hydroxyurea is working. 
When my blood work wasn't reacting the way the doctor wanted, he increased my
dose, switching between 500 and 1000 mg every other day.  Since then, my
platelets have dropped to 300, so that is great.  My doctor went back and
forth between wanting to keep me on Hydroxyurea and putting me on Interferon
alfa.  He didn't want me to stay on Hydroxyurea long-term due to the
Leukemia risk.  Studies seem to be going back and forth on whether it
actually does cause Leukemia or not.  I am glad when it was time for the
decision to be made that he decided Hydroxyurea would be better than Interferon
alfa.  I have read all the side effects of Interferon alfa and would refuse
being treated with it now unless it is absolutely necessary.  When I first
started treatment with Hydroxyurea, the medication wiped me out.  My
doctor kept telling me it was the condition, not the medication, but I don't
think so.  I would come home everyday and sleep for 2-3 hours after work. 
Eventually I got use to the medication and don't even notice too much.  I
do get tired at times, but I manage.  Really I have just gotten to a point where the pills are just like taking my allergy medication and my doctor visits are just routine.  I am now down to blood work once every 2 months and a doctor visit every six months.  ET hasn't caused too many issues with my life, but it is something always in the back of my head as far as a little worry.  I hope this helps.  Let me know if you have any questions.  

 

On 11/23/2007 Jodi74 wrote:

I am 33 and was diagnosed with ET in November
2005 after a bone marrow biopsy and many months of blood tests.  At first
I was not on any medications, but had to go in for blood work about once a
month.  My doctor didn't want to treat me unless I was showing
symptoms.  My platelets began to near 1 million about February 2006. 
It was at this point I was beginning to experience a lot of ocular
migraines....seeing a lot of lights and areas blurred out.  This happened
10 times a day for 4 days in a row.  I called my doctor and was scheduled
for an MRI on my brain....a month later of course.  The doctor decided to
start me on Hydroxyurea 500 mg daily.  My MRI didn't show any sign of
bleeding or a clot, so that was good.  The doctor wanted me to have blood
work done once a week to keep track of how the Hydroxyurea is working. 
When my blood work wasn't reacting the way the doctor wanted, he increased my
dose, switching between 500 and 1000 mg every other day.  Since then, my
platelets have dropped to 300, so that is great.  My doctor went back and
forth between wanting to keep me on Hydroxyurea and putting me on Interferon
alfa.  He didn't want me to stay on Hydroxyurea long-term due to the
Leukemia risk.  Studies seem to be going back and forth on whether it
actually does cause Leukemia or not.  I am glad when it was time for the
decision to be made that he decided Hydroxyurea would be better than Interferon
alfa.  I have read all the side effects of Interferon alfa and would refuse
being treated with it now unless it is absolutely necessary.  When I first
started treatment with Hydroxyurea, the medication wiped me out.  My
doctor kept telling me it was the condition, not the medication, but I don't
think so.  I would come home everyday and sleep for 2-3 hours after work. 
Eventually I got use to the medication and don't even notice too much.  I
do get tired at times, but I manage.  Really I have just gotten to a point where the pills are just like taking my allergy medication and my doctor visits are just routine.  I am now down to blood work once every 2 months and a doctor visit every six months.  ET hasn't caused too many issues with my life, but it is something always in the back of my head as far as a little worry.  I hope this helps.  Let me know if you have any questions.  

Thank You Jodi74 For the information, It is great to know were not alone in this, I was put on hydruexa as well last week started out at 1,000mg. a day an my number's are still high so now I am on 2,000mg. a day,so far no side affect's Thank God,but I do get tired as well and a little light headed, Take care an God Bless, Keep in touch

hi i just read your posting..i was diagnosed today with et and i am sitting here alone on  xmas eve..two of my children have told me off tonight and i amjust so alone and scared and dont know much about this condition,....i would love to have a freind to talk to....donna

Dear Donnad625, I am so sorry you are alone on Christmas eve,Yes I know how scary this disorder can be I have been taking hydroxyurea for just 3 weeks now no side effect's really,just tired alot ,an my number's have came down to the 473 range from over a million, I was diagnosed in oct, had plehbotomies, and have to take an asprin and hydrea,everyday,only to find out that I am now pregnant on top of this and have to switch to inferion injection's it's safer for the baby, any way's tell me about yourself, are you on any meds right now, I will try to answer any question's you may have if I can I am new at this also, so glad to help anytime, LaDonna Parker