It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Blood and Blood Vessel Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 04-23-2009, 09:49 AM   #1
Newbie
(female)
 
Join Date: Apr 2009
Location: New York
Posts: 4
momallars HB User
Unhappy Essential Thrombocytosis

Hi,

Need help from anyone that would help with some anwsers. My son was diagnosis with ET just about 1 year ago, he was 10 yrs old. He platelets were as high as 3.3 million, they put him on 1000mg Hydroxirea and 81mg of baby asprinin. He counts have been coming down, but everytime they lower the meds, he counts go back up. Its been a very hard time for us, he has never been sick in his life. He was tested for the Jak2 mutation, but he does not have it. Been to 2 different doctors, nothing new. They took him off the baby asprinin, because of stomach pains. Is there anyone else out there who's child has this, it seems to be very very rare in a child of his age.
Complains of headaches, stomach problems, pains in legs and knees and feet dizzy sometimes, not sure if this is from meds or ET.

Don't know the long term effects of meds. Please help.

 
Old 04-23-2009, 09:41 PM   #2
Senior Veteran
(male)
 
Join Date: Jul 2008
Location: Canada
Posts: 999
harka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB User
Re: Essential Thrombocytosis

Quote:
Originally Posted by momallars View Post
Hi,

Need help from anyone that would help with some anwsers. My son was diagnosis with ET just about 1 year ago, he was 10 yrs old. He platelets were as high as 3.3 million, they put him on 1000mg Hydroxirea and 81mg of baby asprinin. He counts have been coming down, but everytime they lower the meds, he counts go back up. Its been a very hard time for us, he has never been sick in his life. He was tested for the Jak2 mutation, but he does not have it. Been to 2 different doctors, nothing new. They took him off the baby asprinin, because of stomach pains. Is there anyone else out there who's child has this, it seems to be very very rare in a child of his age.
Complains of headaches, stomach problems, pains in legs and knees and feet dizzy sometimes, not sure if this is from meds or ET.

Don't know the long term effects of meds. Please help.
Hi momallars,

Has your son had a bone marrow biopsy? Has he ever been symptomatic with the high platelets? It's not totally surprising he doesn't have the Jak2 mutation. 90% of people with polycythemia rubra vera have it whereas anywhere between 40-70% of people with ET have it.

 
Sponsors Lightbulb
   
Old 04-24-2009, 06:23 AM   #3
Newbie
(female)
 
Join Date: Apr 2009
Location: New York
Posts: 4
momallars HB User
Re: Essential Thrombocytosis

Quote:
Originally Posted by cgranulomatis View Post
Hi momallars,

Has your son had a bone marrow biopsy? Has he ever been symptomatic with the high platelets? It's not totally surprising he doesn't have the Jak2 mutation. 90% of people with polycythemia rubra vera have it whereas anywhere between 40-70% of people with ET have it.
Yes, he did have a bone marrow biopsy, they ruled out CML and others, never had any sysptoms, we found out with a routine blood test for ADHD.

 
Old 05-07-2009, 06:03 PM   #4
Newbie
(female)
 
Join Date: May 2009
Location: San Antonio Tx USA
Posts: 2
shivalu HB User
Re: Essential Thrombocytosis

Hi,
I have had high platelets for about 15 years. I have had hydrea most of the time. it has worked the best for me. I was dizzy a lot for many years but not to often any more. I also was often very tired, short of breath but with b12 I feel so much better. I don't know the long terms offect of this meds but I am living a very normal life.

 
Old 05-08-2009, 11:33 AM   #5
Newbie
(female)
 
Join Date: Apr 2009
Location: NYC
Posts: 2
redaz HB User
Re: Essential Thrombocytosis

I would like to hear more about Hydrea and any side effects. I am 33 and due to start on Hydrea in a month. I have a difficult time on medication so this worries me a great deal.

Any information regarding Hydrea effects would be really appreciated!

I don't want to do this!

 
Old 05-09-2009, 05:26 PM   #6
Newbie
(female)
 
Join Date: May 2009
Location: San Antonio Tx USA
Posts: 2
shivalu HB User
Re: Essential Thrombocytosis

Hi redaz,
I have taken hydrea most of the 15 year I have had high platelets. It has worked the best for me. I dont have any side effects from other than I get very tired. but about 6 years ago I started getting b12 shots and I feel normal now, most of the time anyways. I do take life easy. When I clean house or yard work I do a little and rest do a little more.
I wish you the best. let me know who things go for you.

Last edited by shivalu; 05-09-2009 at 05:28 PM. Reason: left out words

 
Old 07-07-2009, 07:22 AM   #7
Newbie
(female)
 
Join Date: Dec 2008
Location: T.or C. New Mexico U.S.A.
Posts: 6
amada55 HB User
Re: Essential Thrombocytosis

Hi Redaz, I was diagnosed with e.t. in may of 08.I was a healthy 52 year old female when it happened. Most people said I looked like I was in my early 40s. I was atheletic,and unusually strong for my age. I was put on hydroxyurea, the very lowest dosage, and I was pretty intolerant. It made me very lethargic,to the extreme I had to change medications. I am now taking Anerelide which in my opinion is about the same I am fighting with this medication also, but I tried getting off and my platelets shot up in three weeks, so I have no choice but to stay on the meds. My spleen is now enlarged, and I'm so sure its the side effects of the anegrelide,My next move is to try to go to the Mayo Clinic but vant afford to do so.Besides after reading alittle about it, theyre the ones that put this medication on the market. My son is trying to find a natural way to lower the platelets,if anyone out there has any ideas we all need help!! in my opinion thiese meds lower the platelet count, BUT they destroy everything else in your body. I am almost at the point where I am willing to get off the meds and take my chances with the high platelets!!

 
Old 07-07-2009, 12:46 PM   #8
Newbie
(female)
 
Join Date: Jul 2009
Posts: 2
amosthedog HB User
Re: Essential Thrombocytosis

i have had ET for 10 years. I have been on Anagralide but just switched to Hydroxyurea. Everything has been fine untill 6 months ago when i became very anemic. They don't know why. We checked for bleeding, kidney desease, iron deficiency, etc. So, today we've decided on a bone marrow check likely done at either MD Anderson or Sloan Kettering.

Have you had the JAK2 gene mutation test? This test can determine positively if you have ET or not.

I have checked everywhere to find how i can arrest this disease but cannot find and reason for a cause or help for a cure. If you've just been diagnosed why are they sending you for a bone marrow biopsy so soon?

 
Old 07-08-2009, 06:30 AM   #9
Newbie
(female)
 
Join Date: Apr 2009
Location: NYC
Posts: 2
redaz HB User
Re: Essential Thrombocytosis

Thanks everyone for the replys...

I do have the Jak2 mutation and that test was part of the blood screening that my doctor did on my first visit. It is my understanding that everyone should have that as part of their initial tests..

I agree that the more research one does regarding the drugs often seem worse than the disease. Since I am so sensitive to medication I dread the thought of these drugs..

For AMADA55: I am sorry to hear that you are struggling.. How high are your counts?? Did you have any symptoms or problems before going on the medication?

So far, my counts have remained the same and therefor I am able to put off the bone marrow and the hydrea but it seems it is only a matter of time. (sigh)

Would love to know if anyone has very high counts and decided NOT to take the medication??

STAY WELL!

 
Old 07-23-2009, 11:18 PM   #10
Junior Member
(female)
 
Join Date: Jul 2009
Location: Scottsdale, AZ 8525
Posts: 15
kathydeang HB User
Re: Essential Thrombocytosis

Gosh, that is the highest platelet count I have ever heard of. I cannot believe they have not brought up a stem cell transplant. Have you been to a transplant facility (Mayo, MD Anderson, etc) for an opinion. That can cure ET, and he is young enough he would probably be very resilient.

I had a SCT for leukemia, because my ET (which I never treated because it never gave me too many problems) turned to myelofibrosis which turned to leukemia. (That process took 23 years.) The stem cell transplant is no fun, but worth a possible cure in your situation it seems to me.

 
Old 07-23-2009, 11:24 PM   #11
Junior Member
(female)
 
Join Date: Jul 2009
Location: Scottsdale, AZ 8525
Posts: 15
kathydeang HB User
Re: Essential Thrombocytosis

What is your platelet count? Are you otherwise healthy? Mayo told me when my platelet count was 1.4 million that they do studies on young people with ET and the treatment is often harsher than the disease. Since I was otherwise a healthy 26 year old, they recommended I do nothing. I was fine until 18ish years later when I got myelofibrosis from my big platelets over the years. If I had to do it all again though, I would not treat it.

 
Old 10-04-2009, 09:17 AM   #12
Newbie
(male)
 
Join Date: Oct 2009
Posts: 2
dallo45 HB User
Re: Essential Thrombocytosis

Quote:
Originally Posted by redaz View Post
I would like to hear more about Hydrea and any side effects. I am 33 and due to start on Hydrea in a month. I have a difficult time on medication so this worries me a great deal.

Any information regarding Hydrea effects would be really appreciated!

I don't want to do this!
hi i found out about 2 years ago i had essential cythemia from the fact i had a splenic vein thrombosis after a lot of tests they decided i needed hydrea i can well empathise with you if they showed you the leaflet about hydrea it was scary seeing asthe leaflet i saw was for people with leukemia and was a much higher dose than
people with cythemia would take. to sum it up i have not ha any side effects from taking sometimes 3 500mg andsometimes 2 500mg a day regards p dalgarno

 
Old 10-04-2009, 09:51 AM   #13
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: Ozarks in Arkansas
Posts: 1,825
Oleander53 HB UserOleander53 HB UserOleander53 HB User
Re: Essential Thrombocytosis

Glad to see this thread. Trying to learn about these treatments.

I have posted on here about my boyfriend who is being worked up for PV. His recent Ultrasound came back enlarged spleen and his Liver showed disease. They have not tested him for JAK and have not done a Bone marrow Aspiration. His white count is extremely high, H and H is borderline high and platelettes so far are normal.

My question is can PV or ET cause liver disease? His liver panel is normal and he is negative for Hep C, B and A. Shocked to see the liver is enlarged and sick.

His co worker of 10 years has severe PV with red face and itching and has to have his blood drawn off regularly. I think they were exposed to chemicals at work.

It helps us to read about the treatments and how they affect each person differently. Your sharing is appreciated.

I wonder why so many people have this now?

Oleander

 
Old 10-05-2009, 08:37 AM   #14
Newbie
(female)
 
Join Date: Dec 2008
Location: T.or C. New Mexico U.S.A.
Posts: 6
amada55 HB User
Re: Essential Thrombocytosis

Hi Redaz, thank you for the post, I wish i could get evveryone together for a union somewhere so we could all compare dates,medications,ages,and severity of the illness.I also think that I, like KATHYDEANG, would NOT have taken the medication because I am totally confused with the platelets,(WHAT IS A HIGH PLATELET COUNT??? Is everyones supposed to be the same??) and the side effects do more damage! Well I did get off the medication myself because I wanted to see what it would do and my platelets shot up from 400000 to 900000, needless to say I had no choice and am back on the anegrelide 0.5 miligrams the lowest dose,and a regular aspirin a day, and am experiencing the side effects,everyone says its my age (54) maybe some of it is, but most if it is the poison I'm swallowing every morning. I have and will continue to do what the dr. says. but mostly I will pray to God that they find a cure for this disease that I think can be controlled with an herb.

Last edited by amada55; 10-05-2009 at 08:42 AM.

 
Old 10-06-2009, 07:22 AM   #15
Newbie
(female)
 
Join Date: Jul 2009
Posts: 2
amosthedog HB User
Re: Essential Thrombocytosis

The trouble with not taking the medication and letting the platelets rise is the possibility of stroke. The platelets in ET are not only elevated but, from what i understand, they are misshapen and can clot in a vein or artery.

My ET converted to Myelofibrosis. i have the mutant JAK2 gene which some, but not all, ET and MF patients have. I am on a cocktail of drugs prescribed by MD Anderson and hope this inhibits my defective clone.

I didn't have many side effects when taking Hydroxy or Anagralide. Some water retention and slight joint pain. What are you having?

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
essential thrombocytosis stlpooh79 Blood and Blood Vessel 1 10-06-2009 11:58 AM
Thrombocytosis????? Sorry, very long! DixieDoodle Blood and Blood Vessel 16 04-24-2008 05:55 AM
Essential Thrombocytosis (high platelets) Nicole326 Blood and Blood Vessel 36 03-23-2008 12:06 PM
Reactive vs. Essential Thrombocytosis??? Can anyone help me?? rene24 Blood and Blood Vessel 0 12-31-2007 04:01 AM
thrombocytosis - small vein clots - how is the testing done? adam933 Blood and Blood Vessel 1 10-16-2006 06:01 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



midwest1 (9), Pottsey1 (7), ladybud (7), Cangal (6), japlopper (4), drs (3), femmedeviant (3), jennifer2019 (3), Canyondweller (2), Mel52 (2)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (856), janewhite1 (823), Titchou (771), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 06:37 PM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!