5 ms·

I have a friend who about 15 years ago was told he was going to die from melanoma in about a year. Within that first year he was put on a trial that added anot

I have a friend who about 15 years ago was told he was going to die from melanoma in about a year. Within that first year he was put on a trial that added another 2 or so years to his life. Then during that time another experimental treatment was created and tested on him and that gave him another couple of years. A decade and a half later here we are, he still has cancer but his family (wife and two kids) has got to keep him around a while longer. He’s been “patient one” on a number of studies, some have helped him extend his life expectancy, others have done nothing. Sometimes he has the mental and physical energy to start a trial and other times he does not. The cancer has never gone away, and there have been so many moments of false hope that I’m never really sure where he sits mentally anymore (he really doesn’t want to talk about cancer when we’re together and I don’t think anyone can blame him) but I know he’s grateful for the chance to add more time onto his life when the experimental treatments are available.

tomComb 5y ago
He is both fortunate and unfortunate. Must have a very difficult fifteen years.
01100011 5y ago
Yeah my friend has been doing that for about half as long. It still sucks. Some of the modern, immune-based therapies don't make your hair fall out, but they still can wreck your digestive tract, thyroid, and adrenals(in my friend's case, permanently). There are surgeries as well, and getting slowly hacked up as they chase tumor after tumor isn't fun. Still though, it's a better time to have cancer than ever I suppose.
- sharkweek 5y ago
  I’m sorry your friend is in a similar position. There was one treatment that they were going to trial my friend on that would give him another expected extension but basically make his digestive tract stop working so he’d be pooping out of a tube into a bag the rest of his life but he declined, said it just wasn’t worth it. There have been a couple times that’s been the call he’s made and I appreciate why.
  - stanrivers 5y ago
    Good luck to your friend - sometimes it is not worth it, but the chances he has been taking and the suffering he has been going through in those trials where it is worth it is hopefully helping others in the future with the same disease. Cancer sucks; why it is so hard for us to beat is so frustrating. need more research focused on this.
agumonkey 5y ago
Vince DeVita said it was the main strategy in the 60s. Extend enough to find a new idea. Today things are standardized but if you fall out of the solution, you're given morphine and a bed. Which I find dreadful. Your friend life is a, pardon my french, interesting story.. because he managed to jump above deadlines but I can understand how spiritually damaging it is to always take your fate in your own hand every few years. Good luck to him
gus_massa 5y ago
Is that study a randomized controlled study? Was your friend in the control group or in the experimental group? What was the difference of the outcome in both groups? It's very rare that everyone in the control group dies and everyone in the experimental group survives. Usually the result is mixed. The problem is that medical doctors sometime make bad guess about how many years the person will survive. That's one of the reason to have a control group, so the error in the guess compensate.
- bitcurious 5y ago
  For anyone reading, the control group for cancer trials is the best current treatment, there’s no placebo control.
  - dev_throw 5y ago
    Yep, standard of care is used in control groups. Also, there are trials in which people are moved from the control arm to the experimental treatment upon increase in tumor size, which allows participants to get a chance to actually trial the drug.
ojosilva 5y ago
The thing about trials is that there's a reasonable chance the patient ends up in the control/placebo group, which is something to think about when signing up for miracle. It could help explain some of the "done nothing" studies in your friend's journey. A good friend of mine signed up for a trial as an alternative treatment for her aggressive breast cancer, everyone's hopes went up (trials tend to have that effect on people) but "nothing happened". She passed away 6 months after the trial started without knowing if a placebo was used. It's painful anecdata, but the few people I know that got into cancer studies as an alternative to their regular treatment, none ever had the study knowingly influence their outcome. Yet, in every case, the study was the one-hundred-percent animic lifeboat to grab on to. Participating in a trial is about helping science just as, or more than, it is about helping yourself.
- sharkweek 5y ago
  Yeah he always took some pride in being that early patient in a study. As an aside, I’ll have to be careful here because I think I might be confusing some of the trials he was a part of with actual treatments he received. It’s been a big mix of throwing a lot of different things at the wall.
sjg007 5y ago
The new immunotherapies should be tried if he hasn't done any yet.

tomComb 5y ago

He is both fortunate and unfortunate. Must have a very difficult fifteen years.

01100011 5y ago

Yeah my friend has been doing that for about half as long. It still sucks. Some of the modern, immune-based therapies don't make your hair fall out, but they still can wreck your digestive tract, thyroid, and adrenals(in my friend's case, permanently). There are surgeries as well, and getting slowly hacked up as they chase tumor after tumor isn't fun. Still though, it's a better time to have cancer than ever I suppose.

sharkweek 5y ago
I’m sorry your friend is in a similar position. There was one treatment that they were going to trial my friend on that would give him another expected extension but basically make his digestive tract stop working so he’d be pooping out of a tube into a bag the rest of his life but he declined, said it just wasn’t worth it. There have been a couple times that’s been the call he’s made and I appreciate why.
- stanrivers 5y ago
  Good luck to your friend - sometimes it is not worth it, but the chances he has been taking and the suffering he has been going through in those trials where it is worth it is hopefully helping others in the future with the same disease. Cancer sucks; why it is so hard for us to beat is so frustrating. need more research focused on this.

agumonkey 5y ago

Vince DeVita said it was the main strategy in the 60s. Extend enough to find a new idea. Today things are standardized but if you fall out of the solution, you're given morphine and a bed. Which I find dreadful. Your friend life is a, pardon my french, interesting story.. because he managed to jump above deadlines but I can understand how spiritually damaging it is to always take your fate in your own hand every few years. Good luck to him

gus_massa 5y ago

Is that study a randomized controlled study? Was your friend in the control group or in the experimental group? What was the difference of the outcome in both groups? It's very rare that everyone in the control group dies and everyone in the experimental group survives. Usually the result is mixed. The problem is that medical doctors sometime make bad guess about how many years the person will survive. That's one of the reason to have a control group, so the error in the guess compensate.

bitcurious 5y ago
For anyone reading, the control group for cancer trials is the best current treatment, there’s no placebo control.
- dev_throw 5y ago
  Yep, standard of care is used in control groups. Also, there are trials in which people are moved from the control arm to the experimental treatment upon increase in tumor size, which allows participants to get a chance to actually trial the drug.

ojosilva 5y ago

The thing about trials is that there's a reasonable chance the patient ends up in the control/placebo group, which is something to think about when signing up for miracle. It could help explain some of the "done nothing" studies in your friend's journey. A good friend of mine signed up for a trial as an alternative treatment for her aggressive breast cancer, everyone's hopes went up (trials tend to have that effect on people) but "nothing happened". She passed away 6 months after the trial started without knowing if a placebo was used. It's painful anecdata, but the few people I know that got into cancer studies as an alternative to their regular treatment, none ever had the study knowingly influence their outcome. Yet, in every case, the study was the one-hundred-percent animic lifeboat to grab on to. Participating in a trial is about helping science just as, or more than, it is about helping yourself.

sharkweek 5y ago
Yeah he always took some pride in being that early patient in a study. As an aside, I’ll have to be careful here because I think I might be confusing some of the trials he was a part of with actual treatments he received. It’s been a big mix of throwing a lot of different things at the wall.

sjg007 5y ago

The new immunotherapies should be tried if he hasn't done any yet.