Essential Thrombocythemia and the rest of your life.
February 25th, 2011 . by kanettacHi 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
Kanetta,
It is good to read that you are feeling well. I check on you blog at least once a week to see what other ET patients are experiencing. The list of contributors appears to be growing. That’s a little sad, but I’m glad they have located your blog. Maybe it can bring them some comfort, just as it has me.
I saw my oncologist last week and was disappointed to see that my count had jumped another 34,000 points … that’s a 214,000 increase since August. We have discussed increasing my hydrea from 1,000mg daily to 1,500mg daily, but it’s something I don’t want to do. He feels that we can wait a little longer before we decide for sure, but I’ll do whatever I have to do to keep ET under some control.
I’m determinded to keep doing what I enjoy even though it takes me twice as long to complete my tasks. For me, not doing what I enjoy is a “lost” or “wasted” day.
Best wishes to you and the other ET readers,
Susan in NC
Hi Kanetta,
I was just diagnosed with ET earlier this month. when I went in my count was around 2 million. I was having some serious stomach pain when I went in. I was in a huge stomach pain. I am only 20 years old. I was on a huge amount of hydrea while in the hospital, I could not eat hardly at all. They lowered my dose i think its 2000 mg a day now. I have got my appetite back and am having little to no side effects from the meds so far. Anyone have any advice or stories from living a long time with ET? do you guys know of any other helpful websites or any other helpful information regarding living with ET.
Tom,
Dr. Ruben Mesa at the Mayo Clinic has an interesting conversation on ET. Google … “Ruben Mesa Speaks On Essential Thrombocythemia”. Hope this helps!
Susan
WOW awesome video thank you for posting that. Very informative. Thank you.
Hi Kanetta Where are you? I am worried about you ? You didnot write long time here .
R U Ok? I wish to visit you here and see your new post about your new treatment. In fact my hysband has ET and I find your useful blog recently but unfortunately you have not write more for long time.I wish see you again.
God bless you
Hi Kanetta,
I was just diagnosed with ET earlier this month. when I went in my count was around 2 million. I was having some serious stomach pain when I went in. I was in a huge stomach pain. I am only 20 years old. I was on a huge amount of hydrea while in the hospital, I could not eat hardly at all. They lowered my dose i think its 2000 mg a day now. I have got my appetite back and am having little to no side effects from the meds so far. Anyone have any advice or stories from living a long time with ET? do you guys know of any other helpful websites or any other helpful information regarding living with ET.
+1