December 7, 2010
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What would you do?
You have an incurable disease. The medication you are on is not effective anymore. Your oncologist is recommending a new medicine that is currently in phase 3 clinical trials. It shows a lot of promise. Roughly 2/3 of the patients respond very well to it. The side effects are similar to the medication you are on. Half of the patients in the trial will be given placebo and the other half the medication. Neither you nor your doctor know what you are on. While you're on the trial, your doctor will continue to treat you and may provide other treatment(s) if required. There will be frequent visits to the hospital for tests when you're on the trial. While this is not the last resort, 2 other medication with uncomfortable side effects may work. Chemo and radiation are the next options.
What would you do?
Comments (30)
if it is incurable then why take the meds?
@buddy71 - to keep it under control so it doesn't spread too far.
Take the new medication? And at the same time, check the 'bucket list'.....
@CurryPuffy - if the treatment makes you worse and keeps you from living a productive life until you die, then no. i would rather be able to live until i die.
Try the medicine. If it doesn't work... find out how the side-effects for the other 2 medicines with uncomfortable resorts will effect me...
If im not strong enough, i don't think I would want to go through chemo/radiation...
While doing everything I can on my to-do list...since you did say it's uncurable =(
...*hug*
=(
I'd probably go for the trial. Wouldn't want the ones with bad side-effects.
And I'd also gather all my friends and ask them all to give me a hug.
The decision may depend on the nature of the disease and the detailed risks, such as the quantity and quality of life of each options. On the first pass, I would take the trial and monitor closely both the side-effects and impact of the disease. If there are serious side effects, or the disease got worse, I would quickly move onto other treatment options. I would also starting doing things that I enjoy in life while I am still physically able to. I like Gary's suggestion of Bucket list ideas. It is TIME to draw up the list.
Prepare for the worst. As much as we'd love too, we can't hold on forever. *hugs*
Well, I really have to be honest here and say 'I don't know'. I think it's so easy to 'guess' at what you might do - when your not in that situation - but if you someday find that you are, you may do something different to what you expected you'd do. The only thing I can say for sure is that my focus would be on pain relief and the ability to hold on to my independence for as long as possible, but if a disease is 'incurable', I don't see the point of meds that are just going to make me feel worse by their side effects if there is no chance that they are going to cure me ! I think for me, it would be more about the quality of the life I have left. Rather a shorter but more independent, active life, than a longer life filled with miserable incapacitating side effects of meds making things even worse!
I'd be in the trial.
@buddy71 - If we're all going to die then why live?
Good question my friend. I have indicated I am organ donor and the rest of my body when I am done with it can be used for research or training for medical students. I also have a living will. I think at this point in my life I would do whatever is best for the rest of my family - I consider us all to be related as a family. So if a trial would help the rest of humankind sure I would participate. Not sure I would go through chemo and radiation. For me they are extra-ordinary treatments. I think I have accepted dying as part of living. That being one reason I feel I can live full and free. Ops started to post on your post
.
I'd go for the trial.
...=/... trial
sounds tough. go for the trial. your not just helping yourself i suppose. thats oddly selfless though and i dont know you so i can only assume the worst (sorry!) so ..... go for chemo. i actually know a few people whove used it and been treated effectively...lots of trials tho....... so... trial or chemo... trial or chemo.... yaaaaay placebooo. go with the trial.... oh.. uhm... im new. so. if ive offended. lemme know. if not. comment back? subscribe to me and ill subscribe to you!!! yaaaay networkinggg.
try out the new medication despite the side effects and the uncertain result. most definitely.
we`re born to die; flip a coin
We all have to die. The issue is when and what is the quality of life. If I could be assured I'd get the med and not the placebo, I'd go for it. Chemo is very unpleasant and the side effects really suck. You will more or less have to put everything in your life on hold to deal with that. It works, though. This assumes the patient is strong enough to deal with it. Hit me privately (that really sounds gross): fsnissen@gmail.com Be safe and strong, Matt. You are a good guy and I understand exactly where you are.
@buddy71 - Long as you have reasonable quality of life, take the meds, If the quality of life is an issue when you take the meds, don't deal with the collateral damage from the meds.
Without having given it a lot of thought, my first inclination is to participate in the trial. There are a lot of factors to consider, of course.
Tough choice there, but my initial reaction would be go for the trial. It doesn't add to suffering (same side effects), has a good chance of success but only if you are not the control group. On the other hand, it'd help forward science too? I'm sure they've thought about this, but would the placebo's be medicated to give you the same side effects as the meds? I don't know how medical labs are performed, but if they just give sugar pills, then if you have no side effects you can be reasonably sure you are not on the meds =/
They're a lot smarter than me, so I'm sure they got that covered though.
Just another thought. Depending on how much time you will likely have with the other 2 but more sideeffects drugs, would they be able to hold things at bay while this trial drug gets developed? If it hits market whilst you are using the other 2... couldn't you transition to it then?
Well considering that there is a 50% chance that you wont even BE on the new meds even if you elicit to take them, what would be better? taking something you know works and suffering the uncomfortable side effects? or possibly be taking sugar pills and end up on one of those other meds anyways? Personally I would suffer the side effects if I knew at least I was taking SOMETHING instead of nothing..
If the patient is alert despite the incurable disease, you should ask him for his own wish. No one else should have to make that kind of decision.
Blessings to you Mattie.
@CurryPuffy - @Devilzgaysianboi - @buddy71 - @pika_whoosh - @yang1815 - @Fatcat723 - @Chatamanda - @oxyGENE_08 - @stevew918 - @ZSA_MD - @fraeulein_nein - @AzureRecollections - @christao408 - @stepaside_loser - @Toro69 - @AppsScraps - @rudyhou - @Pauvey - @ThePrince - @TakingxOverxMe -
Thank you all for your feedback and comments; as always - they are very much appreciated. I've given my dad my own opinion and left it up to him to make an informed decision.
@ElusiveWords - wish him the best of luck~
@ElusiveWords - Best of luck to your dad.
@pika_whoosh - I will, thanks Matthew.
@yang1815 - He'll need it - thanks Andy.
One of those tough questions I don't think I would be able to answer until I'm really faced with the decision...
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