Hi Everyone, well, I went back to the doctor after being off Hydrea for 4 weeks and my platelets have shot up 125 points to 801.  What a disappointment!  I was so hoping they would be lower.  My doctor ask me how I feel and if I had noticed anything different and I told him that I have been feeling great.  The only thing really different is  not having any lightheaded feelings that I have when I am on the Hydrea.  Anyway, he told me to not take the Hydrea for another month and see what my platelets are then.  If they are “through the roof”  I’m sure to go back on it.  We will see.  If I start having any of my symptoms I had beforeI was diagnosed with ET then I will be on the phone calling my doctor.  The symptoms included, extreme pain in my legs to the point I couldn’t walk, pin-point pain in my fingertips and red blotches on my hand palms, and a feeling of carrying around a heavy load.  I really don’t mind taking the Hydrea.  I was used to it and I was willing to take it the rest of my life and I still am if it comes to that.  I really hope that by writing this blog that others that have ET will know they are not alone in this disease.  It’s okay, we can do it!  Take care until the next time.  I reach my hand out to all of you.  We don’t have a cure but we CAN live a good life!  Kanetta

Hi all you fellow ET sufferers! I went to my doctor today and he has taken me off the hydrea. I am excited about it. He wants me to come back in for another blood test in about a month.  If my platelets go over 700 then I will have to go back on the hydrea.  I still have to take my baby aspirin every day. My platelets have been pretty consistent at 675 for about a year.  Hopefully they will not go up.  We will see.  I remember when he first put me on hydrea, I felt so bad all the time. I am expecting to feel like a brand new person very soon. I hope so!

At least I know that there surely is a light at the end of your tunnel. Please everyone out there with ET, do not get discouraged.  If I can do it everybody can.  Just do as your doctor tells you. I am not cured (there is no cure) but I do know that you can get better. God bless all of you! Kanetta

Hi Everyone, I apoligize for taking so long about updating this page.  Actually, I am doing very well.  About 3 months ago, my doctor said he was going to take me off of Hydrea and treat me with aspirin only.  My platelets have been consistently at around the 600′s.  The range for normal is below 400.  The reason he didn’t do it is because I had some squamous cell cancer on top of my nose and surgery was scheduled to have it removed.  He said that there may be too much bleeding and that is why he did not  take me off the Hydrea.  I have an appointment next week to see him.  We will see what happens.  I have always felt that stress plays an important part in this disease and I have had a lot of stress in my personal life during the last three months.  For most people my problems would be minor, but for me they are major.  I worry about everything.  If my platelets are up, I will know why.

When my doctor first told me that he was thinking about taking me off the Hydrea, I felt a little uneasy.  I have been taking it for so long that it worries me a little that my platelets may jump way up when I go off of it.  But I guess one would never know unless they give it a try.  Although my doctor did not say this, I think that after a while one’s body adapts to what is consistent.  Does that make sense?   I’ll be posting again after my next doctor’s appointment next week.  Everyone, please take care and God bless all of you.  Kanetta

Hi Everyone, I want to dedicate this posting to my good friend, Marlene Paladino who looked me up after we had not seen or heard from each other in 35 years.  I was so excited to hear from her.  She is a fine human being and has such a kind heart.  She and I met in Naples Italy when our husbands were stationed there.  That was really the most  wonderful experience and I will never forget it.  Thank you, Marlene. 

It’s been a while since I posted and I just want everyone to know that life is good.  It really is what you want to make it.  Living with ET is not the end of the world.  Just be sensible about your capabilities and accept it.  There really hasn’t been a big change in my condition.  I still take my Hydrea and low dose aspirin everyday and I basically feel pretty good.  The last time I went to the doctor my platelets were at the 700 mark.  If they were normal they would  not be over 400.  At least they are NOT at the million count any more.  The doctor almost took me off the Hydrea last time but changed his mind.  I am slightly anemic as a result of the  Hydrea and I think that is why he considered it.  Other than being a little light headed at times, I am doing very well.

Please everyone, read some of the comments sent in by some of the ET sufferers who regularly read this blog.  You will be very surprised that you are not alone.  ET is everywhere and there are many people out there  that are walking  around with this disease and don’t know it.  Let us know what is happening with you.  A researcher reading these comments may find a very important lead in his work to find a cure.  I know they are really working hard on it and they need all the help they can get.

God bless all of you.  Kanetta

June 19, 2010  Hi Everyone, It has been so long since I have posted that I guess you all thought I had died!   I’m still here, alive and loving every minute of my life. 

There really isn’t much to talk about except that I went to my doctor yesterday and my platelets were at 717. down from 807  just three months ago.   I still think that my platelets rise and fall in relation to my stress mode.  I try not to get stressed out but sometimes it is almost unavoidable.  However, I feel great and most of the time I don’t think of my ET at all!

I want to mention that my doctor told me that they are testing a new drug for ET and hopfully I will be one of the ones to participate.  That has not been firmed up yet but maybe.  I will pass along any information I get on the subject.  My next appointment will be 3 months from now.

Thanks  to all the ones writing in comments.  Every letter is helpful so please keep them coming.

Love to all of you and GOOD HEALTH!