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

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

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

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!

It has been a while since I posted but it is not because I didn’t want to do it.  Sometimes I feel that this disease is always hovering over my head and all I want to do is just get away from it and not talk about it at all.  That works until I have my appointment with my doctor and all he does is talk about it.  Then, I come crashing back to reality.  My last reality check was that my platelet count has been increasing just a few points each month and now they are  up to 804.  MY doctor said he will probably have to increase my dosage the next time I see him which will be in about 2 more months. 

Also, since my last posting my husband was diagnosed with prostate cancer.  He had surgery on June 2, 2009 and now is doing very well.  He can’t do all the things at the moment that he likes to do such as play tennis and riding his bike but he is doing so good.  Thank God!  He’s walking a lot and he goes over to the tennis court to hang out with his friends.  I think his prognosis is very good.  I am not worrying about him as much as I was.   He said he was starting back playing tennis next week!

This posting is a little special because I am going to talk about some of the many letters that I have received.  Some have important questions and I don’t have the answers.  However, some of you may know exactly what they are talking about.

Kristy wants to know if anyone has ever gotten pregnant and had ET.  Was it difficult to conceive and was the baby healthy?  Rachel has answered that question already.  She said she had two healthy babies that the doctors said she would never have.  That is a wonderful success story but as a word of caution, check with your doctor first.  Life is such a very precious thing.   

Wendy is on interferon and gives the shots to herself.   She said she lost a lot of her hair when she started taking the interferon.  But after her platelet count went down, her ET symptoms disappeared and she got her hair back.  She is trying to stay positive and enjoying life day by day.  Wendy feels that stress can play a large part in raising the level of platelets.  Because when she gets stressed her platelets go up.  I feel that way also.  Especially with what I have been through with my husbands illness.   

Stacey wants to know if anyone has put on weight while using Hydrea.  I, Kanetta have put on weight but I think it’s because I’m too fond of cookies and cakes.  However, it would be appreciated if someone would let us know about weight gain and Hydrea.

Dorothy wants to know if anyone suffers from migraine headaches like her.  She said  she has at least one migraine every 4 to 5 days.  She has also suffered from hair loss.

Wendy said that she thinks her ET was a result of untreated anemia.  She said that someone told her that if your blood doesn’t have enough iron that your system will start over producing platelets.  She has also suffered from hair loss.

Blake says that he sometimes experiences a skin rash (tiny red flat dots beneath the skin on lower legs and ankles) with the Hydrea.

To all the ET sufferers, these are just some of the comments that I have received.  On each posting there is a button that says comments.  Please read the comments because each comment holds valuable information about this disease.  There is a pattern developing and we need to put it all together to find a CURE!  Take care and God bless each and everyone of you.  Until the next time I post, Kanetta

Hi Everyone, Two months ago my doctor told me to stay on the same Hydroxurea dosage of 500mg. daily even though my platelets were steadily increasing and had reached 887 and guess what?  My platelets went down over 100 points to 785.  I just couldn’t believe it.  Also, my anemia was gone.  Apparently I am one of the people who get anemic taking a higher dosage of Hydroxyurea.  My doctor said that he was going keep me on the same dosage of  Hydroxyurea because I was doing so well.  He also cautioned me that if I experienced any of the pre-treatment symptoms of ET such as burning sensation in my fingertips and toes, painful leg aches, muscle weakness, (bright light) colored spots in my vision, also (white light) spots that were like I was looking through a jagged piece of glass, etc. to call him immediately.  So far, I am doing great.  I hope I don’t have to call him or even see him for obvious reasons.  I have another appointment in two months and that will be soon enough.  I feel good now and really hope it stays that way.  I am not fond of taking any kind of medicine.  I really don’t know why I feel that way.  However, I am all for it if it will prolong my life. 

For all of you out there who are suffering with this disease, there is hope.  They are working on a cure  everyday.  No one knows why we have ET and no one knows how we can get rid of it.  For now, we just have to learn to live our lives the best we can and hope that they will soon come up with a cure.   WOULDN’T THAT BE NICE! 

Don’t forget to post a comment.  I really love to hear from you.  I look forward to it everytime I check my blog.  Kanetta

Kanetta at home with Tiffy.

Hi Everyone, thanks to all who have written in and given us an inside glimpse of what it is like living with this disease.  It really helps the attitude to know that you are not the only one out there that has Thrombocythemia.  All of us seem to be living our life almost the same as we did before this disease was discovered in our bodies.  I am using the word “discovered” because none of us actually know when it actually started or how we contacted it.  I know the experts are working on a cure but as of now, I haven’t heard of any.

On October 28, my doctor lowered my dosage of Hydroxyurea to only one pill (500 mg.) a day.  My platelets were not actually coming down. They were basically just staying the same; however, I was getting anemic from the Hydroxyurea and I think that is why he lowered my dosage.  On December 9, only two months later, I went to have my blood work done again and my platelets had gone up to 887.  That was a jump of 317 points in only two months.  What a downer!  However, my anemia numbers were so much better.  The doctor told me to keep taking the one pill a day (500 mg.) just as I had been doing.  I will say that I have been feeling better than I have in a long time and I know it’s because of not taking the higher dosage and also because i’m not as anemic as I was before.  Anemia can play a large part in how a person is feeling.  I have an appointment to see my doctor on January 27.  I can’t wait to see what my numbers are then.  I am just hoping that the platelets are staying the same and haven’t shot up higher.  The dosage that I am now taking agrees with my system very well and I really don’t want him to increase it but if he must do it then I will take the medicine.  At this point, my only hope is that the Hydroxyurea keeps on working.

I’ll keep you all posted on what happens after my next doctor visit.  I hope it’s good and I promise I won’t take so long next time on keeping you up-to-date.  Living with Thrombocythemia isn’t easy but life is worth fighting for and keeping a good quality of life is even better.  Don’t forget to fill in the comment section to let all of know how you are coping and even better, LIVING.  Happy New Year to you all and I hope that this will be the best year ever for all of us.   Kanetta

 I had my doctor’s (Oncologist) appointment this past Tuesday and he has reduced my dosage of Hydrea to only 5 mg. daily.  I take the generic Hydroxyurea.  It is less expensive and is the same identical medicine.  I also take one low dosage aspirin daily.  I’ve been doing that from the beginning.  It works together with the Hydroxyurea.  My platelets have not gone down but are staying basically the same.  On this visit they were 570.  Two months ago they were 547 and 4 months ago they were 546.  I think the doctor considers this as staying the same.  He wants me back to have my blood drawn again in 6 weeks.  If my platelets start inching up higher he will probably up my dosage.  He reduced my medication once before when my platelets went down.  That was about a year or so ago and my platelets remained about the same for several months.  Then they slowly went creaping back up.  I felt wonderful during the time I was on the lower dosage and I am hoping I feel good this time.   Only time will tell.  In actuality, I have been feeling pretty good on the higher dosage but that’s probably because I have just become accustomed to taking it.  

I know that they are working on a cure for ET and it will probably be within the life times of most of the Et sufferers out there.  I am just hoping that it will be in my lifetime.  I’m no “spring chicken” for sure!  No one knows what causes it yet.  That would be a good start.  My uneducated theory is that stress may play a major role in this disease.  Some people can handle stress a lot better than others.  I, for one am a “worry wart”.  Always have been and still am. 

Please keep the comments coming.  Everybody who reads this page wants to know how the other ET sufferers are coping.  I want to know also.  Even though it sounds like I am not having any problems, I still have my “not so good days.”  I always get over it.  No one that I am associated with knows that I have this disease.  I don’t talk about it so much because they don’t understand.  I think it’s because it’s not that interesting to them.  I can’t blame them for that.  I probably would be the same way if I didn’t have ET.  I’m so thankful that I have my husband around for listening.  He will always stop whatever he is doing when I want to talk.  I look healthy, have energy (not as much as I used to), and laugh a lot so anybody looking and talking to me would never know that I have a very serious illness for which there is no cure.  It’s as if I have a little secret and no one knows it but me.  However, I love writing this page and communicating with all the ones who have this disease.  We need each other.  This is our way to release some of the anxiety that we are all going through everyday of our lives.  To all of you, have a blessed and healthy day and remember you are not alone.  Kanetta

October 31, 2008  Thanks, to all the ones who have posted comments.  That means so very much to me and I think it means a lot to all the others who are reading this page.  I have had this disease for 3 years and this is the FIRST TIME that I have had any communication with anyone who has this disease.  Tears actually came to my eyes when I read the first comment I received.  It really helps to talk about it to another ET patient because only they could truly understand.