I feel like this is a bit of a loaded question...
I, myself, think that I would do what I could to get as much quality time as possible with my loved ones.
I would, yes. If I had the opportunity to advance science and help others I would personally find meaning in the experience. It is, of course, a highly personal decision and there is no right or wrong answer to the question.
It’s not loaded. It’s just a weird headspace.
I would. That said, it's easy to make that decision not being in that situation, not knowing the possible effects etc. and how it could affect treatment.
So, I was referred for two different studies. The first one, I was screened but, I didn’t qualify. (I can’t remember what it was).
The second one is like a cancer vaccine. They take some of my tumor and make a vaccine that is given every three weeks. I’ve been on keytruda, which is immunotherapy, but not a vaccine.
Cancer tumors hide from our immune system by shielding themselves with “protector” proteins. Keytruda breaks in to that protective protein shield and, in theory, gives your immune system a chance to “see” the cancer and handle it.
So, this vaccine...they take a biopsy of your cancer and they create a personalized vaccine which they give in addition to keytruda. A 1-2 punch, so to speak.
Probably. my friend with the ovarian cancer who died in 2015 probably got more time thanks to the various trials she was part of. I have a former colleague fighting bladder cancer now and she's been down this road for 5 years and is still going. Just started a new trial for a new idea...so yeah, it furthers our understanding
I don’t really have any hesitation in doing this, BUT it is the first time it’s been given in humans and that feels a little weird.
I guess then I'd want to know the downside for effects, and have to weigh them versus whatever time I might have otherwise. I likely would. MY SIL declined treatment, but it was also her third bout w/ cancer.
Marcy did the vaccine therapy at Johns Hopkins and I am certain the reason she got years instead of months when she was in stage 4 when diagnosed was vaccine therapy
Tittertat: it sounds kind of cool, it's the right time for some serious breakthroughs. I'd be hopeful.
I will say this - the drug that put me into a durable, complete remission works in a similar way. It adds a marker to my cancer cells that lets my body identify and kill the cancer. This kind of treatment is cutting edge and in some cases has been curative. I think if I were you I would go for it. I am here to support you whatever you choose friend
that is so futuristic, it is a bit scary but I think it is more exciting, it is so logical.
isle: I am positive that this is the right way to treat cancer. This particular drug and this trial may not be THE ONE, but we making such huge advances in genetics. It’s just amazing.
I am so very glad that you have the opportunity to look at this and participate.
Chestnut: thanks! And, hey, that’s good to know!!! It’s not something I’d really ever considered. My husband was part of a double blind study for some GERD medicine, and of course he didn’t know if he got the drug or not.
I still don’t know if I’m in. I go tomorrow for consent and screening, but the nurse that I talked to today cryptically indicated that I would be participating. So, I’m assuming that this initial screening will be to screen me out instead of screening me in (if that makes sense). Like...I’m in unless something is odd in my lab work or ekg or something. 🤷♀️
If it would be something that would extend my time or possibly help stop the cancer, and didn't have debilitating side effects that would make life even worse, I'd say I'd go for it. Then again, I've not been in that position.
As others have said, it is a very personal decision. I would very likely do it, because I believe if we can have a play a role in advancing palliative and curative treatments, I want to do my part.
This question arose with my mom. She had a choice of a standard treatment or participating in a trial. Her benefit was going to be the same in either case - probable remission for some time before the disease returns - and she wanted to do the trial because it would potentially help other people.
In cancer trials the control is the standard treatment versus being a placebo. For me personally, I would absolutely opt for a trial if it were available and could potentially help others down the road.
All that said - everyone only gets one death. And you have so little control over that process that any decision you make is the right one for you. There are no do-overs, and you get to decide what your single death will look like as much as you can. A drug trial may not be the death you need to have, and you get to make that call.
Your participation or lack of it will not change the outcome, so there should be no pressure or guilt in choosing not to do it. And if participating would prevent you from doing things you really want to do, then absolutely skip it. There are really no shortage of people wanting to participate in cancer studies and trials, unfortunately.