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The emotional trial of clinical trials: like online dating with death risk

jakeseliger.com

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Re: The emotional trial of clinical trials: like online dating with death risk

#91

Post by sam537 »

I am close to some of these institutions and it pains me to hear the trouble you had just getting an answer a yes or no answer or getting your paperwork checked for eligibility. In large institutions there is not only an institutional culture but a Department-specific culture (as crazy as that sounds!). I am lucky to be part of a Department that has a immediate attention and transfer attitude from leadership and it permeates down to the faculty and next-day appointment slots are kept open and things accommodated.

I wish you the best, and it makes me want to work even harder to hear about the challenges we still face.

Re: The emotional trial of clinical trials: like online dating with death risk

#92

Post by anileated »

data_maan wrote: post #29

The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. If you are an inmate, or a patient you're just happy once you're out, and don't want to spend more of the time to fix. And if you're a free or healthy person, why devote time to something that will likely not concern you? (It might some day, but few people are reflecting enough to realize this.…

Unlike a prison you can be sure you will end up in the hands of the medical system sooner or later. You are very motivated to care about it.

Re: The emotional trial of clinical trials: like online dating with death risk

#93

Post by jseliger »

timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

Tell people that you don't know the answer

I should probably clarify that point; oncologists are often dealing with small numbers and a lot of uncertainty. I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good.

I also have recurrent and metastatic squamous cell carcinoma originating in the tongue. A lot of these 1b and even 2 trials are being tested in multiple cancer types. Something can work pretty well in lung but not head and neck, or vice-versa.

They will say they don't know the answer, but I prefer having some guidance. "Good" and "bad" are also relative, particularly for what I have, which is nearly always fatal. Is SGNTV good, cause it shrinks some people's tumors, or bad, cause of all those side effects? The answer is both.

It's still useful IMO to run sanity checks on what you're told. For example, one onc said that I should try a trial very similar to this one: https://www.oncnursingnews.com/view/lenvatinib-plus-pembroli..., or one like it, that had already failed. When I checked to see what research had been published, I was baffled by the rec. I checked w/ my oncologist at UCSD, and she was also like: "I would probably not rank that trial highly."

Re: The emotional trial of clinical trials: like online dating with death risk

#94

Post by jseliger »

sam537 wrote: post #91

I am close to some of these institutions and it pains me to hear the trouble you had just getting an answer a yes or no answer or getting your paperwork checked for eligibility. In large institutions there is not only an institutional culture but a Department-specific culture (as crazy as that sounds!). I am lucky to be part of a Department that has a immediate attention and transfer attitude from leadership and it p…

Yeah, some of them have been great: "Two are obvious: Memorial-Sloan Kettering (MSK) in New York City and Dana Farber in Boston, and our experiences with both have been fantastic (not because there is less bureaucracy, but because the doctors we dealt with there were not completely beholden to it)." If you have what I have, those are both good. UCSD Health is enormous, but I was also able to get an initial telemedicine consult there, which was fantastic, I think in part because the head and neck oncologists understand the obvious regarding how hard it is to travel. Now, to get that telemedicine appointment, I did have to drive over the California border, and do it from California, but they were willing to make the appointment happen and I solemnly promised that I was in face in California.

Re: The emotional trial of clinical trials: like online dating with death risk

#95

Post by jseliger »

j_m_b wrote: post #84

The author is very technologically sophisticated. Imagine how difficult it would be to enroll if this was not the case, just finding trials alone is an arduous task. Streamlining clinical trials, particularly in recruitment and enrollment, is a hard problem.

Part 2 does note that I better understand why a lot of people take whatever local trials are available and hope. I have a lot of advantages and this has been brutal and crushing.

Re: The emotional trial of clinical trials: like online dating with death risk

#99

Post by timr »

jseliger wrote: post #93
timr wrote: post #50

This was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble…

Tell people that you don't know the answer I should probably clarify that point; oncologists are often dealing with small numbers and a lot of uncertainty. I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good. I also have recurrent and metastatic squamous cell carcinoma or…

> I'm also not sure how much they're supposed to say—I don't see the NDAs or other docs they sign with drug companies. That said, if they see tumors shrink in at least some patients, that's pretty good.

I mean, that's all they have to go on, so it's all they can say. But it's a long way from any sort of proof, and they really should only be saying "we don't know, and you're taking part in an experiment to find out".

What you're saying about oncologists sounds quite plausible to me...there are sadly a lot of doctors who don't understand science, and it's sort of a fundamental feature of medicine that the people involved want very badly to believe in whatever they're doing. This can/does lead to people making bold claims on thin evidence.

That said, I do hope it works out for you, and I wish you the best. It's a selfless thing to take part in a clinical trial, and even more so when the stakes are so high.

Edit: regarding the pembro+lenvatinib trial article you linked (LEAP), it's not the only one that showed similar results (PFS benefit, but no OS). The CLEAR trial was similar: https://www.youtube.com/watch?v=CsN0mskqUyU

Edit 2: also, I want to add that nothing I said above was meant to imply that they should hide data, just that they should make it clear what the odds are in a phase 1 trial situation.

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