On 7/28/2007
NikkiM wrote:
Michael,
Thanks for your response. I stared the Hydrea today with reluctance. It is just hard for me to accept putting toxins IN my body! But I have no other choice (that I know of). I would love to hear of some alternative meds. My plts went from 1.2 mil to 1.5 to now over 1.7 million in about three weeks. Not good! It is only 500 mg a day for now. We will have to monitor my other counts weekly to see how I do on it. I am very scared of this turning into Leukemia, but I am trusting my doctor.
I would love to hear about the study you are involved in, but the board removed your private information.
Thanks again!
Nikki
Nikki- I too have ET-diagnosed when I was 21-so lets just say it was over 25 years ago!!
I was put on Hydrea when my platelets were 1.5 million and the fatigue was unbearable-about 12 years ago. I did not do well on it-my WBC went way down, my platelets were bouncing all over the place, and I had the dreaded mouth sores. As soon as anagrelide came on the market, I switched. That was after 1 1/2 years of Hydrea.
I have done well with aspirin, and anagrelide, but now all the top MPD docs are screeching to get off it. I just came from a conference in NYC , and had a chance to personally speak to some of the best, and was told to get off the anagrelide-yesterday!
So now I am in a tizzy, and have made an appointment with my current MD as to if I should try Hydrea again(which is what the top docs said to do)
There is a lot of info-so search it out and become an expert on yourself! I hope you have found the other MPD websites that are out there also.
You do need treatment-if you are in the so called high risk groups.I was treated with aspirin only for the first 14 years after diagnosis. I had 2 healthy children also-which I was told not to try either.
There is a risk of leukemia, fibrosis...even without treatment-it is a quality of life issue.
I wish you luck and hope you not only feel better, but get all the info you can find, and find a doctor that you trust and that will discuss everything in detail.
Good Luck, Nikki!