i think this is the most important thing this board and others could do. we are already self diagnosing and left on our own anyway half the time, getting routinely denied coverage that we pay for, and we are expected to simply do as we are told by the robots that have no self governance or creative technique or curiosity what so ever. to say you have not progressed far enough after 5 years to consider an experimental therapy is arrogant and childish. we need to create a community that can bring like minded doctors together with patients like this, with drugs like this. if we sit around and wait our turn, time runs out.
Quote:Is there any way for us to create a list of practitioners that are willing to get patients on LL sooner rather than the last minute
Quote:Hi everyone,
First I would like to say thank you to everyone that messaged me with helpful information and sincere concern for my brother in law and his battle.
I wanted to take the time to update the board from my first post late January.
Here is the update on my BIL.
When he went to Mayo in Minnesota they completed two genetic test. One came back showing no targetable mutations that would assist in treatment decisions. Still waiting to hear back on the second test. When he was at Mayo he asked his onco about getting approved for Leronlimab. She dismissed it saying his cancer has not progressed far enough yet (I think it has been five and a half years since he was diagnosed so not sure what constitutes far enough progression). She basically told him he is not close enough to death to consider an unapproved treatment. He just started proton beam radiation therapy due to mediastinal metastasis. I believe this is another form of chemo that is concentrated at the areas of most concern.
Does anyone know of any doctors out there that are willing to get people on Leronlimab without waiting for them to be at deaths door? Is there any way for us to create a list of practitioners that are willing to get patients on LL sooner rather than the last minute? My thoughts are maybe we should create a list (like Ohms) of the doctors that refused to consider LL because they are SOC robots and another of the doctors that are proactive, receptive, and helpful. My brother in law is, for now, fortunate enough to be able to travel and meet with a Onco if they will help. If anyone knows of an Onco out there willing to work with Cytodyn and use LL to save peoples lives I would be extremely appreciative to know their names and where they practice. Once LL is proven to save lives maybe the doctors that refuse to try LL would be more receptive to listening to their patients in the future if we had an accountability list of names of those willing to help and those that dismissed LL.
In addition to my brother in law, I found out a wonderful lady friend of mine has been diagnosed with stage 3B Leiomyosarcoma. She is only 23 years old and apparently this is a very aggressive form of cancer. Does anyone know if LL would help. I'm sure it will somehow but maybe someone here can explain how. Trying to get the treating oncos to listen is not easy as many on here know.
GLTAL
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