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You don't talk to random doctor. You talk directly/contact docs running the trails. They will tell you what is possible. If isn't possible in the US for brain-d

by sgit 9y ago

You don't talk to random doctor. You talk directly/contact docs running the trails. They will tell you what is possible. If isn't possible in the US for brain-dead/financial/bureaucratic reasons, once you get the details look for reputed cancer centers abroad who are willing to do it. You will be surprised how many docs will respond to you over email.

agumonkey 9y ago
The doctors in charge of my uncle didn't and that is the largest issue. Other researchers did, a good percentage did, some didn't but I can't expect 100% time spending for my email so that's ok. I was surprised but you're right they do answer a few times. Back to the issue: if first medical caretakers don't listen, then your family won't listen, because they trust the hospital religiously, albeit schizophrenically too [1]. Which means someone will die sooner than necessary. [1] scary disease put everything back to primitive human emotions. My family, and even I, were constantly dancing between "they don't do enough" "thank you so much". My aunt even thought nurses would poison her husband if she rubbed them the wrong way. But in the end, hospital gets the vote, and somehow when death wins.. doesn't matter who was right or not.
- dghughes 9y ago
  My dad was lucky to get a drug for his lungs he has an uncommon deadly disease called IPF (and also COPD). It was a combination of doctor, insurance and drug company but in the end he was approved and was given the drug. People networking is as important in health as IT it's who you know. I know I was "researching" (Internet, I'm not a doctor) everything you get desperate when you hear your family member only has a few years. You even consider alternative mumbo jumbo think well maybe it may work. Studies and trials are rare in my small town and region but if you can I'd search, ask, impose, network do whatever it takes have no shame! You didn't mention if your uncle was still living if so I wish you and your uncle good luck and good health.
  - agumonkey 9y ago
    Well, I wasn't clear above, but sadly nature reclaimed my uncle, he's now ashes. I thank you very very much for asking and wish you the best of luck. It's a very weird and sensitive subject. About your comment: 1) indeed networking is massively important. You talk to someone out of the blue, it's hard; you say you've been directed by <acquaintance> and the discussion is now relaxed and open. 2) indeed, you have to forget about shame. Just insist politely. It's hard at first but with time it goes. 3) I feared becoming too emotional and trusting things that would reinforce my belief. So I stuck on the usual venues: pubmed, nih, nci, etc etc. And even then, every topic or paper, I would check citation, publication date, previous or more recent validation/invalidation. Research lacks counter studies and sample so one academic paper is not enough. After this screening, I then pinged various people about these findings and what they thought about it, to again, not pursue my own dreams. The issue is, 10 doctors ~= 10 point of views. 3) clinical studies were barely starting in my uncle case (one doctor told me about israel), he was against this because he thought he would be a guinea pig suffering for their profit. Which isn't false but we could have delayed death a bit. We all felt it was way too quick. ps: all of this just gives hint about the complexity of the real world. So many pieces working at the same time, politics, economy, research, companies, doctors, networks .. nothing fits perfectly, and if you have to turns the gears on your own it takes deep faith to never stop. I wish I did more, but since it's the first time, I couldn't know if I was crazy and foolish or if I should harass doctors a bit more. My opinion is now clear: never stop; be sensitive, but never stop. (that's also the quality of a leader.. which is as old as important in human groups)

by sgit 9y ago

agumonkey 9y ago

The doctors in charge of my uncle didn't and that is the largest issue. Other researchers did, a good percentage did, some didn't but I can't expect 100% time spending for my email so that's ok. I was surprised but you're right they do answer a few times. Back to the issue: if first medical caretakers don't listen, then your family won't listen, because they trust the hospital religiously, albeit schizophrenically too [1]. Which means someone will die sooner than necessary. [1] scary disease put everything back to primitive human emotions. My family, and even I, were constantly dancing between "they don't do enough" "thank you so much". My aunt even thought nurses would poison her husband if she rubbed them the wrong way. But in the end, hospital gets the vote, and somehow when death wins.. doesn't matter who was right or not.

dghughes 9y ago
My dad was lucky to get a drug for his lungs he has an uncommon deadly disease called IPF (and also COPD). It was a combination of doctor, insurance and drug company but in the end he was approved and was given the drug. People networking is as important in health as IT it's who you know. I know I was "researching" (Internet, I'm not a doctor) everything you get desperate when you hear your family member only has a few years. You even consider alternative mumbo jumbo think well maybe it may work. Studies and trials are rare in my small town and region but if you can I'd search, ask, impose, network do whatever it takes have no shame! You didn't mention if your uncle was still living if so I wish you and your uncle good luck and good health.
- agumonkey 9y ago
  Well, I wasn't clear above, but sadly nature reclaimed my uncle, he's now ashes. I thank you very very much for asking and wish you the best of luck. It's a very weird and sensitive subject. About your comment: 1) indeed networking is massively important. You talk to someone out of the blue, it's hard; you say you've been directed by <acquaintance> and the discussion is now relaxed and open. 2) indeed, you have to forget about shame. Just insist politely. It's hard at first but with time it goes. 3) I feared becoming too emotional and trusting things that would reinforce my belief. So I stuck on the usual venues: pubmed, nih, nci, etc etc. And even then, every topic or paper, I would check citation, publication date, previous or more recent validation/invalidation. Research lacks counter studies and sample so one academic paper is not enough. After this screening, I then pinged various people about these findings and what they thought about it, to again, not pursue my own dreams. The issue is, 10 doctors ~= 10 point of views. 3) clinical studies were barely starting in my uncle case (one doctor told me about israel), he was against this because he thought he would be a guinea pig suffering for their profit. Which isn't false but we could have delayed death a bit. We all felt it was way too quick. ps: all of this just gives hint about the complexity of the real world. So many pieces working at the same time, politics, economy, research, companies, doctors, networks .. nothing fits perfectly, and if you have to turns the gears on your own it takes deep faith to never stop. I wish I did more, but since it's the first time, I couldn't know if I was crazy and foolish or if I should harass doctors a bit more. My opinion is now clear: never stop; be sensitive, but never stop. (that's also the quality of a leader.. which is as old as important in human groups)