ET

Hi everyone!  I am so glad that I found this site.  During a routine physical in May, my doctor dscovered that I had a high blood platelet count.  She retested it two times as a precautionary measure, and after the last blood count results came back at 508,000 she referred me to a hematologist.

My hematologist asked me a series of questions, and to my knowledge, I have no relatives with ET. My hematologist did another CBC, and stated that if my blood platelet count remained high that she would examine my bone marrow.  I am terrified!  I know I should not jump to conclusions without having an official diagnosis, but since I am curious-natured, I had to read up on this condition (and based on what I have read thus far, I totally scared myself!

 I have to admit that I have not experienced many of the symptoms associated with ET, but I have noticed a great deal of fatigue. 

It would be wonderful to connect with anyone who has ET, as I am fearful- especially since I have a four year old son.  Replies or comments would be greatly appreciated, as it would be nice to have a form of support. Thanks and of course best of health to everyone! 

On 9/18/2007 Callalilly2 wrote:

Hi everyone!  I am so glad that I found this site.  During a routine physical in May, my doctor dscovered that I had a high blood platelet count.  She retested it two times as a precautionary measure, and after the last blood count results came back at 508,000 she referred me to a hematologist.

My hematologist asked me a series of questions, and to my knowledge, I have no relatives with ET. My hematologist did another CBC, and stated that if my blood platelet count remained high that she would examine my bone marrow.  I am terrified!  I know I should not jump to conclusions without having an official diagnosis, but since I am curious-natured, I had to read up on this condition (and based on what I have read thus far, I totally scared myself!

 I have to admit that I have not experienced many of the symptoms associated with ET, but I have noticed a great deal of fatigue. 

It would be wonderful to connect with anyone who has ET, as I am fearful- especially since I have a four year old son.  Replies or comments would be greatly appreciated, as it would be nice to have a form of support. Thanks and of course best of health to everyone! 

Don't panic... I was recently diagnosed with ET.  I had the bone marrow biospsy - I did not have much pain associated with the test.  Take one step at a time.  I am still learning about ET myself, but it appears to be manageable.  I am on Hydroxurea and have only have a very mild reaction to it.    Good Luck!

I appreciate your response.  I am no longer in panic mode as I have learned some more things about the disorder since I posted my message.  I actually had a bone marrow aspirate and biop to determine if I had Primary or Secondary ET.  I have to admit that the procedure was extremely painful as my hematologist had a difficult time penetrating the bone.  The  good news is that the procedure did not take as long as I had anticipated...it felt like 20 charlie horses at once when she aspirated the marrow and pain was minimal post procedure.  My results indicated that I have Primary ET, so thank goodness there is no underlying cause.

I have blood drawn on a quarterly basis to monitor my platelets and I take 81 mg of aspirin daily to thin my blood.  That seems to be working for now. My count was at 479,000 in August and at 579,000 in November.  Obviously the numbers will fluctuate, but my hematologist told me not to be concerned unless the number reaches 800,000.  In the event my platelets reach that number, then a different course of treatment will be prescribed.

The one thing that puzzles me is that according to cancer websites, ET is considered to be a blood cancer. Yet, my hematologist explains that it really is not since there is no invasion into the vital organs.  She basically said it depends upon who you ask.  I prefer to deem it as a disorder..the word cancer just sounds too scary. 

I hope that you are doing well! 

Thanks for the response.  Have you found any other message boards pertaining to ET?

 I am taking 500 mg of hydroxurea daily with 81 mg of asprin.  I have weekly blood tests.  My platelet count was 772 three weeks ago it is currently down to 561.

I have not found much.  However, I found some links for support groups and newsletters at the National Cancer Institute's website (www.cancer.gov) .  I am hoping to make some great contacts there.  I would be more than happy to share information with you as I discover it! 

 Take very good care, get lots of rest and most of all, maintain a positive attitude.  I'm here if you ever need to chat.

Sounds great!  Chat with you soon!