My husband was diagnosed with ET in 1991. His platelett count
was over 2 million. He has been treated with Hydrea, Anagralide,
Interferon shots and baby aspirin. The side effects from many of
these drugs are not good. With Hydrea, he gets BIG mouth
sores. The doctors assured him that that was not what was causing
them, but then we did some research on the "net" and found out that is
one of the side effects. Every doctor he sees wants to cure
him. They just want to pump the drugs into him. He has
gotten to the point where he is refusing the drugs. He takes
Hydrea currently, but in low doses. His count is near one
million, but the side effects from more of this drug are worse than the
disease. He actually had no side effects from the disease - only
the drugs. We have been told (and we have read on the net) that
Hydrea taken over an extended period of time can cause Leukemia.
His doctor told him that has not been proven. We need to get more
info on that before his next visit.
I guess what I
have seen over the past 17 years is that the cure is worse than the
disease. I have asked the questions "if the plateletts are not
mature, how do you know a high count is not normal". I guess that
has not been proven. We feel we have to be our own doctor when it
comes to the drugs. That is the only way to do it. He can't
live with big mouth sores and not being able to swallow or eat because
he has taken all this medication.
Good luck to you. I guess
the only advise that I can give you is to monitor your medications
yourself. If the side effects are too much for you to handle, you
will know it.
It's nice to know someone is out there that we can talk to that is in the same boat.
Jean