Hi - I am new to this site and have never posted on a message board elsewhere before, either. I apologize if my post is not done properly.
My dad was diagnosed with ET several months ago. It was being controlled fairly well with anegralide. This past January, he was also diagnosed with bladder cancer and had a very large tumor removed from the bladder wall. The cancer is treatable; however, he has had several recurrent episodes of clots and bleeding since the original surgery and has had to undergo 5 additional surgeries since then to cauterize the area to stop the bleeding. A week ago, his platelet count was up to 2.5 million but is down to 1.3 million today. I'm quite certain that is not helping his healing process at all. They are now treating it aggressively with hydrea and are working toward a balance of the anegralide and hydrea as both used aggressively on their own have other unwanted side effects. The goal is to get the platelet count down to 700-800 area. To complicate matters further, he has an enlarged prostate that may also be contributing to this bleeding and clotting cycle he cannot get out of. At some point, they will need to treat his bladder cancer (recurs frequently) with a localized chemo treatment but really need to get him out of this bleeding cycle first. He's had a catheter put in more times in the past 2 months than any person should have to go through in a lifetime.
I'm just looking for any kind of help anyone might be able to offer. My dad is almost 62. He worked very hard all his life to be able to enjoy an early retirement and just a couple years into it, this is what he is dealing with instead of being on the golf course like he'd planned. His outlook is decent, but I'm fearful that if this continues, he will become depressed.
It helps to find sites like this (and I've found a couple others as well) so I can see that others are dealing with this disorder also. Thanks for taking the time to read this message and best wishes to all of you. ~Kim in Arizona