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2018-02-01 12:10 PM

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Champion
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Subject: Right to Try
Just heard Trump talk about a new program they are pushing for that would allow terminally ill patients to use drugs before the drugs have final FDA approval. Makes sense to me! If you have 2 months to live and there is a drug that might help you then you would sign a waiver and be able to get drugs that are still under development.

This to me is simply giving power back to the people. Let me decide what risks I am willing to accept!


2018-02-01 12:24 PM
in reply to: Rogillio

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Subject: RE: Right to Try
They already have this. My dad enrolled in an experimental drug trial for Leukemia. Most cancer centers have a research branch that works with experimental drugs that aren't available on the market yet. How does this differ?
2018-02-01 12:33 PM
in reply to: mdg2003

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Subject: RE: Right to Try
Originally posted by mdg2003

They already have this. My dad enrolled in an experimental drug trial for Leukemia. Most cancer centers have a research branch that works with experimental drugs that aren't available on the market yet. How does this differ?


IDK. I was just listening to Trump's speech to the GOP and he mentioned it. Sounded like a new program.
2018-02-01 12:38 PM
in reply to: Rogillio

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Subject: RE: Right to Try
OIC, looks like this would be a federal law that would keep the feds from interfering with states' right to try laws.
2018-02-01 12:42 PM
in reply to: Rogillio

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Subject: RE: Right to Try
In that case it might be helpful to families that are required to travel to get treatment. I recall meeting a young lady that flew in from Colorado every week to receive her treatment in San Antonio. Maybe this bypasses the red tape and would allow people to receive these drugs at their local hospital, rather than travel to the facility where the trial is being conducted.
2018-02-01 12:56 PM
in reply to: mdg2003

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Subject: RE: Right to Try
Ummm, this is called a Phase I clinical trial.


2018-02-01 1:09 PM
in reply to: Oysterboy

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Subject: RE: Right to Try
Originally posted by Oysterboy

Ummm, this is called a Phase I clinical trial.


Is that like Microsoft's Beta Testing (aka release to public)?
2018-02-01 3:13 PM
in reply to: Rogillio

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Subject: RE: Right to Try
Phase I's are trials that determine tolerable doses of drugs. Generally given to folks that are very sick and have failed other treatments. The thing to remember is most drugs do not work so the chances of an experimental drug doing you any good, well you have a waaay better chance of hitting the lottery on a day you get struck by lightning.
2018-02-01 4:10 PM
in reply to: Oysterboy

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Subject: RE: Right to Try
Originally posted by Oysterboy

Phase I's are trials that determine tolerable doses of drugs. Generally given to folks that are very sick and have failed other treatments. The thing to remember is most drugs do not work so the chances of an experimental drug doing you any good, well you have a waaay better chance of hitting the lottery on a day you get struck by lightning.


If I am dying I would take the long shot.
2018-02-01 6:59 PM
in reply to: Rogillio

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Subject: RE: Right to Try
Sure you would but might just make you sicker.
2018-02-01 7:05 PM
in reply to: Oysterboy

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Subject: RE: Right to Try

Originally posted by Oysterboy Phase I's are trials that determine tolerable doses of drugs. Generally given to folks that are very sick and have failed other treatments. The thing to remember is most drugs do not work so the chances of an experimental drug doing you any good, well you have a waaay better chance of hitting the lottery on a day you get struck by lightning.

Isn't it hard to get in on the trials though?

My wife's family has a lot of cancer and I know several applied for various trials and were never selected. 
Could be something totally different.  Not my field of course.



2018-02-01 7:37 PM
in reply to: tuwood

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Subject: RE: Right to Try
Really depends on the health care institutions around you. Most clinical trials are done at big academic research hospitals as they have the necessary infrastructure to conduct the trials. Largely, stuff that exists on the coasts. With that said, yes, you must have specific disease characteristics to qualify for the trials and likely your wife's relatives just did not have certain boxes checked.

I've been thinking about this and I think I'd pass on a phase I trial. By the time you qualify you have probably been through hell, at least 3 or 4 rounds of chemo with the later rounds being made of some really nasty poisons. Undoubtedly you will have metastatic disease which means whatever they give you, you will be resistant in 2-3 months and you feel like cr@p all the time. Much of this time you will be in and out of hospitals with many, many overnight if not multiple night stays.

Me, I'd just accept my mortality, get into hospice, and go into that good night peacefully. Not put myself or my family through pointless treatments. But that is me, I understand cancer and what can and what honestly cannot be done. This is why doctors use the least amount of health care $ in their last 6 months than any other demographic.

http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/...
2018-02-01 7:45 PM
in reply to: Oysterboy

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Subject: RE: Right to Try

Originally posted by Oysterboy Really depends on the health care institutions around you. Most clinical trials are done at big academic research hospitals as they have the necessary infrastructure to conduct the trials. Largely, stuff that exists on the coasts. With that said, yes, you must have specific disease characteristics to qualify for the trials and likely your wife's relatives just did not have certain boxes checked. I've been thinking about this and I think I'd pass on a phase I trial. By the time you qualify you have probably been through hell, at least 3 or 4 rounds of chemo with the later rounds being made of some really nasty poisons. Undoubtedly you will have metastatic disease which means whatever they give you, you will be resistant in 2-3 months and you feel like cr@p all the time. Much of this time you will be in and out of hospitals with many, many overnight if not multiple night stays. Me, I'd just accept my mortality, get into hospice, and go into that good night peacefully. Not put myself or my family through pointless treatments. But that is me, I understand cancer and what can and what honestly cannot be done. This is why doctors use the least amount of health care $ in their last 6 months than any other demographic. http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/...

I totally understand that point of view and don't really know what road I'd go down if I were given the choice, but I do want to have the choice.
My wife's grandma was diagnosed with cancer (think she was 80) and her husband passed many years earlier and she had lived a good long life.  She flat out said she didn't want to go through the misery of chemo and wanted to go out with her dignity in tact.  The funny part is that she'd been a lifelong closet alcoholic and always hid alcohol and the family was constantly trying to clear her house of it.  When she made her decision to not fight the cancer the whole family rallied around her and were bringing bottles of booze and had the best times with her.  She lasted almost a year and it was probably the best year of her life with her and her family and her funeral was a true celebration.  It changed my view a lot on terminal care.

2018-02-01 8:11 PM
in reply to: tuwood

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Subject: RE: Right to Try
Great story Tony, that is how I want to go out. She had the insight to know that at 80 you have little ability to heal, and that almost all treatments would be, ultimately, futile. For me, I'd go the first round of chemo and see how it goes. First rounds are generally pretty gentle and a bit more targeted. It is when this fails (and it usually does given enough time) the subsequent rounds get fugly. I've seen it too many times, I've come to peace with my mortality. Pour me a drink.
2018-02-01 11:39 PM
in reply to: Oysterboy

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Subject: RE: Right to Try
Originally posted by Oysterboy

Phase I's are trials that determine tolerable doses of drugs. Generally given to folks that are very sick and have failed other treatments. The thing to remember is most drugs do not work so the chances of an experimental drug doing you any good, well you have a waaay better chance of hitting the lottery on a day you get struck by lightning.


My Dad hit the lottery in his trial. He was dxd with AML at 72, pretty much considered a death sentence at that age. Traditional chemo didn't work and the Doc said he had 2-3 months tops. He got in a trial and they actually cured him of Leukemia. Unfortunately he contracted Legionnaires disease shortly after his bone marrow biopsy came back clean. Getting a bone marrow transplant at that age is generally pretty bad odds too, but the trial did give him another 18 months he wouldn't have seen otherwise.
2018-02-02 5:32 AM
in reply to: #5236847

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Subject: RE: Right to Try
Yeah, we’ve made some huge advances in heme malignancies with bone marrow transplants, drugs to block key oncogenes (like gleevec for AML) and immunotherapy. Cancer does not have to be the death sentence it was 20 years ago. My point is that if you have advanced disease, there is frankly little that can be done.


2018-02-02 5:57 AM
in reply to: Oysterboy

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Subject: RE: Right to Try
Originally posted by Oysterboy

Yeah, we’ve made some huge advances in heme malignancies with bone marrow transplants, drugs to block key oncogenes (like gleevec for AML) and immunotherapy. Cancer does not have to be the death sentence it was 20 years ago. My point is that if you have advanced disease, there is frankly little that can be done.


Completely agree. Both my grandfather and my dad died of cancer and they both refused treatment when it was diagnosed as terminal. They died at home with nothing but morphine but even still, it was a slow and painful way to die.

I would like my obit to read: "Mike Rogillio died today on his 75th birthday having been diagnosed with terminal cancer. Rogillio was skydiving with two topless blonds and he evidently forgot to pull his rip cord. He lived a full life."


2018-02-02 11:11 AM
in reply to: Rogillio

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Subject: RE: Right to Try
Originally posted by Rogillio

Originally posted by Oysterboy

Yeah, we’ve made some huge advances in heme malignancies with bone marrow transplants, drugs to block key oncogenes (like gleevec for AML) and immunotherapy. Cancer does not have to be the death sentence it was 20 years ago. My point is that if you have advanced disease, there is frankly little that can be done.


Completely agree. Both my grandfather and my dad died of cancer and they both refused treatment when it was diagnosed as terminal. They died at home with nothing but morphine but even still, it was a slow and painful way to die.

I would like my obit to read: "Mike Rogillio died today on his 75th birthday having been diagnosed with terminal cancer. Rogillio was skydiving with two topless blonds and he evidently forgot to pull his rip cord. He lived a full life."





I'd take a cross country flight out west. Topping off the tanks and getting a cooler of Sierra Nevada Celebration Ale in Flagstaff. Drink that circling the Grand Canyon and augering in around Tuweep from 10,000 feet.
2018-02-02 11:13 AM
in reply to: mdg2003

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Subject: RE: Right to Try
Originally posted by mdg2003

Originally posted by Rogillio

Originally posted by Oysterboy

Yeah, we’ve made some huge advances in heme malignancies with bone marrow transplants, drugs to block key oncogenes (like gleevec for AML) and immunotherapy. Cancer does not have to be the death sentence it was 20 years ago. My point is that if you have advanced disease, there is frankly little that can be done.


Completely agree. Both my grandfather and my dad died of cancer and they both refused treatment when it was diagnosed as terminal. They died at home with nothing but morphine but even still, it was a slow and painful way to die.

I would like my obit to read: "Mike Rogillio died today on his 75th birthday having been diagnosed with terminal cancer. Rogillio was skydiving with two topless blonds and he evidently forgot to pull his rip cord. He lived a full life."





I'd take a cross country flight out west. Topping off the tanks and getting a cooler of Sierra Nevada Celebration Ale in Flagstaff. Drink that circling the Grand Canyon and augering in around Tuweep from 10,000 feet.


Sounds awesome!
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