Kanetta Update
October 11th, 2008 . by kanettacKanetta at Big Lagoon Park with Tiffy
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!
Hi Kanetta,
I was just diagnosed with ET a couple of weeks ago. I went in for a routine annual exam, mentioned to my doc that I was feeling lousy, she ordered blood tests and the race was on. Multiple doctor appointments, blood tests, bone marrow biopsy, etc. later I was diagnosed with this strange disease called Essential Thrombocythemia.
I am currently on 1000 mg Hydrea daily. The problem is I still feel awful. I’m very frustrated right now.
Any way I’d like to correspond with you. Perhaps we can support each other and provide each other with information since it seems to be relatively hard to come by. By the way my next appointment is also October 28.
Take care and be well.
Linda
Hello,
Nicoe to have found your blog…..I two have ET. I was diagnoised in 2003…I am amazed that you and I hae IDENTICAL SYMPTOMS…..they also told me it wa silent migraines, mine showed up in my blood . I was taking hydrea for 4 years until this past May I made the decision, along with my husband to go off of it. I was tired of feeling tired….so here I am doing ok..my platelets are staying around 863,000. So I guess I must live with it…..thanks for the blog and info
Hi,
I was diagnosed with ET 15 years ago and have been going strong ever since. Sure I’ve had a few TIA’s and ups and downs with the meds over the years, but also in that time I’ve had two healthy babies (that they said I’d never have). I agree with the Hydrea comments, it makes me feel really tired and upsets my stomach. But Interferon is worse! For me anyway. I hate feeling like you’re living with a bomb ready to go off when it comes to the clotting risk. Like Michelle I too went off Hydrea for a year at a time, but the platelets always rise back up to an unacceptably risky number. That being said, the only clots I’ve had were always when my platelets were at a normal count. Go figure!
Hi
Me too, I was diagnosed in last 4 months by routine check up with platelets 1200k. I was put on Hydrea 1000 mg/day. Now, my platelets is staying at around 400k. Before that I often had headache but after treatment started it had gone. I am also tired more often. My last visit to doc, the medication was changed to Anagrelide because doc said it has less side effect than Hydrea for a long term using. I will tell you again about Anagrelide after taking for more than a couple weeks. Bye.
Take care
Diagnosed with ET eighteen years ago, I have been on anagrelide for the past 16 years (started with the Mayo Clinic tests of anagrelide for ET. This controlled my platlet count for years but about 4 years ago I had to add hydrourea to bring down my rising white cell count. Both long term use of anagrelide and hydrourea have cause some intense anemia problems. Drugs to conteract anemia make me really sick. Off those for four years now. I am glad to hear from others with this disease.
I was diagnosed about a month ago and we are still trying to reduce mt count which is aroung 1100. I am finding it hard to deal with this as i am not sure what to expect and how to deal with it. I am gald that i found this site.