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.

After my last entry, I went back to the doctor .  This time it was only for blood work.  Well, my platelets were 1 point higher than the last time I was there.  That means only that my platelets are at the same level as they were last time.  However, I was disappointed because I was just so sure that they would be  a lot lower.  I have another appointment with my doctor on the 28th of October and I feel that this time they will be down.  I plan to keep a positive attitude because I just can’t think any other way.  My quality of life means a lot to me and I’m not going to throw it all away by worrying about something that I can’t do a thing about.  I don’t know how I will die, but I don’t think it will be from Essential Thrombocythemia.  I think it will be one of the following:  falling out of my Lazy Boy recliner, chasing my dog down the street, playing the slot machines in Biloxi, eating too much gourmet food (I love to cook), shopping til I drop at Dillards, or talking and walking at the same time and not looking at where I’m going,  Those are just some of the ways that comes to mind.  Everything is really in God’s hands and whatever he has in store for me is okay.  I’m actually very happy with my life and I would not want it any other way.

I’ll let you know what my doctor tells me after my next appointment.  Should you have a similar situation, let me know how you are doing!

The reason I started this blog is to let other people who have this disease know that they are not alone. When I was first diagnosed, I tried to find information on this little known and rare disease and could not find much on it. There is no cure. My oncologist is very involved in the research to find a cure. When my illness was first diagnosed, I think one of the things I really wanted to know was how other victims of this disease have coped and if there was any light at the end of the tunnel. I can tell you right now that there is a light and you can make it as bright as you want it to be.

Let me start by telling you how my ET (Essential Thrombocythemia) was discovered and diagnosed. First of all they put essential in front of thrombocythemia because they don’t know how I got it or where it came from. I do know that I had been on hormone replacement therapy for at least 20 to 25 years and when this disease was diagnosed the doctors told me to stop taking it NOW. However, they tell me that they don’t think that is what caused it.

This disease was first diagnosed in November 2005. At this writing, it has been almost 3 years. For about a year prior to my diagnosis, I had experienced a burning sensation on the tips of my fingers and toes. This would come and go. The really awful symptom that was so very painful was the extreme ache in my leg muscles. It felt as if I had been on a treadmill or a bicycle for hours. My muscles would feel like they were burning if I only walked a few steps. I can remember one incident when the pain was so bad that I had to lean up against a store front at the mall. A sales lady came up and ask me if I was okay. I knew the pain would go away in a little while if I could just sit down. Sometimes, I would experience spots in my vision. The spots were like very bright lights that were blocking out my sight. Most of the time it looked like a jagged piece of broken glass. One time when I was at my office, I looked down at a document that I had been working on and the whole inside of the paper was a bright light with a jagged circular pattern around it. Throughout all of these symptoms, I had gone to doctors continuously to find out why I was having these symptoms, but they obviously didn’t think it was anything to be of a concern. I think that was because I am basically an upbeat person and I don’t look sick. On my own, I went to an optomologist to see of something was happening to my sight. I had gone to him at least twice before and then on one visit he showed me a chart and ask me if the spots looked like that. It did in a way. He said that was what people sometimes see who have migraine headaches. He said I must be having migraines without the head ache.

I ended up in the emergency room two different times when I fainted. Once in a convenience store, where thank God I was with my husband and the second time at home with my family. They did a brain CAT scan during one of the times. Everything came up normal. No one there could give me an answer as to what was wrong with me.

I made my yearly appointment for my mammogram and they found a small area of cancer in my left breast. It was located very close to the skin and the doctor did not think it was anything to be concerned about but it had to come out. I went into the hospital and they drew my blood. The day of the surgery, the doctor came out and told me that I had an elevated blood platelet count of over 1 million. They almost did not do the surgery, but after a telephone call and an okay from my future oncologist, they did the operation.

I made an appointment and went alone to see the oncologist and I was not worried in the slightest. I thought he would probably just give me a pill and I’ll be fine. I didn’t think anything serious was wrong with me. I had had the cancerous tissue removed from my breast and I thought that was the worst part. How little did I know. He examined me, looked at my chart and then ask me if I had any love ones with me because he wanted to talk to me and he wanted them to come into the room to be with me. I told him that I had come alone. He proceeded to tell me that I had a disease called Essential Thrombocythemia and I had too many blood platelets. He said that they can stick together in the blood stream and create clots which can travel to my heart, lungs and throughout my body. He was talking about my disease but it all seemed like a blur to me. I became extremely frightened and ask him if I was going to die. He said I was a very lucky person that they had found the disease when they did and with treatment I could live a normal life span. Without treatment I would die of a stroke due to a blood clot. He also said that too many blood platelets can build up in the liver and the spleen, enlarging them both. He wrote out a prescription for Anagrelide and told me that he really wanted to put me on Hydrea (generic is Hydroxyurea) but he wanted to do a bone marrow biopsy first. My feelings at the time were that I was a walking time bomb.

With prescription in hand I left the doctor’s office and went to my neighborhood pharmacy where I was told that they did not have the medicine in stock. They sent me to another pharmacy that was located about 15 miles down the road in another town. It was turning dark by now and when I got into my car with the medicine, I downed it with some bottled water I had in the car. I sat there for a while and thought what in the world is going on. This was all just plain crazy! Then I called my husband.

Since then, my husband has accompanied me to every appointment that I have had with the oncologist.

After, starting the medication, I felt nauseous and felt as if I was going to faint all the time. I am a Realtor and sometimes when I would be with a customer, I would have to excuse myself to sit down. It seemed like it was like that much of the time. After the doctor started me on Hydrea, I felt somewhat better. Then when my platelets were not coming down fast enough, he increased my medicine. When he increased my medication, I started feeling nauseous and light headed a lot. The medicine made me anemic and the doctor ordered iron shots for me. That helped some. Then my platelets went down and the doctor decreased my medicine to one pill a day. A few months later my platelets went back up again and so did my medicine. I have also had a body CAT scan to see how my liver and spleen look. When I was leaving my CAT scan appointment and walking to the car my teeth started chattering. This is NOT a symtom of Thrombocythemia. This was simply my nerves. I could not stop my teeth from chattering and I broke a tooth. As soon as I got home I had to call my dentist to make an appointment. I felt so drained. This was such an ordeal. I think my liver and my spleen are okay, but now I have a brand new cap on my tooth as a souvenir. Oh well!

On my last doctor’s visit, 6/24/08 my platelets were down to 546. At this point I am presently taking 5 mg Hydrea one day and 10 mg the next day. I have adjusted very nicely and I have learned to drink as much water as I possibly can each day because that helps a lot with the nausea and the light headiness. I am looking forward to my next doctor’s visit because I am optimistically anticipating that my blood platelets will be down to at least 400. I do just about everything I want to do and I am enjoying my life. My faith in God has helped me get through this and I have a wonderful husband who I love and I know loves me. I also have a beautiful daughter that I adore. She keeps checking in with me all the time and comes over to see her Dad and me at least once a week. Life couldn’t be better.

We need as much publicity on Essential Thrombocythemia as we can get. I believe people are dying everyday from this disease that was never diagnosed properly. The information is simply not out there. I am one of the very lucky ones that was diagnosed in time. A start is needed and I hope this Blog will be the start.

Please write to me and let me know how you are doing with your Thrombocythemia. I would love to hear from you and I am sure others would love to hear from you too.

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