It's too late for me to be awake again but here I am blogging my heart out. I figured I should post a little more about my trip to Sloan-Kettering and what I'm really thinking about.
The doctor said that this tumor does not eat the bone. I'm annoyed and excited by this. We know that there is a bone problem and that I have a hole in my bone. I know that part of my bone is dying. Those are things I can solidly confirm. What can't really be confirmed by anyone is how the desmoid tumor and the hole/erosion are related. The radiation doctors say there is no way this is caused by any of their treatments. The doctors also don't think the tumor really eats the bone. So at this point we are still treating the desmoid with the chemo since it seems to be working. I have tasked my doctors to come up with a plan for the bone. Initial thoughts with the doctor at MSK is that I could go on bone strengthening drugs. With more drugs come more side effects so it's a risk-reward scenario. Hopefully in the next week or so we'll have a plan of attack.
Second thing that I liked about the trip was that he introduced me to the drug Doxil. Apparently the doctor's at MSK have been using this drug to treat desmoids for some time now with "great" results. He said in 40% of patients that Doxil shrinks the tumor. I questioned that I hadn't seen any research on this drug that was well documented. He said they've had dozens of patients on the drug and that they haven't published any of it. Super annoying that they would hide something that could possibly help so much. He did also say that the drug Gleevac wasn't showing much promise. There's so much that doctor's keep to themselves in silos.
I hope other desmoid patients read this and get some glimmer of hope or new answers that they hadn't had before. I can say that the above was all news to me. So much is kept under wraps and this disease is so frustrating to begin with.
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