why didn't you consider a clinical trial?

[Darryl]

Please help me understand more about the barriers to participating in clinical trials. If you've ever considered joining a clinical trial but decided against it, please share what influenced your decision?

[God_Loves_Me]

I am currently participating in clinical trials, and here are things concerning me.

The clinical trial system is broken. Patients with life expectancies of less than six months are not recruited. All patients should have access to clinical trials.

It is hard to find data and education from clinical trials

So many test results were required to participate in clinical trials, and I went through 7+ different scans.

Sponsored demand is so high many times that I drive one one-hour drive just to draw blood. I requested they provide access to the nearest locations, and the answer was NO.

The doctor and nurse do not educate the patient. It is so frustrating.

[Darryl Partner in reply to God_Loves_Me]

Thank you for your reply

[Docker53 in reply to God_Loves_Me]

My husband's next option is clinic trial or Chemo for 2nd time. Where are you located?

[God_Loves_Me in reply to Docker53]

ATL Georgia

[mrscruffy]

no trials waiting for total failure. if it works dont fix it

[street-air]

I was told of a trial as an alternative to RP. The treatment was a new drug, or presumably a placebo or more well known drug in the other arm, then RP anyway after a year. So, I said, you get RP anyway. Why go on this trial? they said well yeah we have had difficulty recruiting. No kidding!

The other thing on trials is the mental situation with possibility of getting assigned to the placebo arm. Or the trial is phase 1 where they do not even know the dose. It feels like donating your organs to science except you have not vacated the premises yet. Laudable yes but not that advantageous.

[Jack54 in reply to street-air]

Exactly the way I feel

[SpencerBoy11]

I was the caregiver to my dear wife and couldn't afford to give up time for her. Also my urologist did some aggressive care for my PCa at the start and my PSA has been undetectable. Still on ADT.

As an aside, I have MDS-RS and have applied for many trials to no avail. They don't want people whose MDS was caused by radiation (me) or chemo.

[Brad70]

In most trials you won’t know if you are being treated or getting a placebo. Only a 50/50 chance of being treated with something that most likely doesn’t work and may be harmful.

[Jpburns in reply to Brad70]

I don’t think ANY ethical trial would give cancer patients a placebo. What they probably do is compare a new treatment to a previous treatment.

[Brad70 in reply to Jpburns]

Many use a placebo. Its the best way to determine the side effects of the new treatment.

[anonymoose2]

My doctor never suggested one. Maybe at a later date he will. 🤷

[Lewellen]

I was all set to join a trial, but the word came back that I didn't have enough cancer 😳. I was disappointed I couldn't participate, but I couldn't really squawk about the good news 😄

[Ian99]

The main difficulty is finding an appropriate trial. This area is ripe for computerised mechanisation. Trials should be registered in a searchable DB. Ideally a PCa patient would be able to input elements of his medical situation into an app which would search this DB and display suitable trials.

[Darryl Partner in reply to Ian99]

Have you tried "Clinical Trial Navigator," the GPT on ChatGPT? It does exactly what you described. chatgpt.com/g/g-rl6cvjdon-c...

[Ian99 in reply to Darryl]

I was unaware of this. Will take a look. Many thanks.

[NanoMRI]

Twice, I decided against my medical teams STAMPEDE Trial recommendation. The first recommendation came in 2017 after my salvage RT to the prostate bed. The second after my salvage extended pelvic lymph node surgery (ePLND), the following year.

Although my salvage RT was unsuccessful, with a nadir 0.075, I declined STAMPEDE for several reasons. My treatment intent remained curative and there was no reason to believe this treatment protocol had a high likelihood for a cure. Whereas, the likelihood of near- and-long-term side effects were by no means low. I also want to defer the possibility of CR for as long as possible. Perhaps, most importantly to me, I was otherwise very healthy, fit and active and only sixty.

Having declined STAMPEDE, I went for salvage ePLND, which confirmed six metastatic pelvic lymph nodes, including the common iliac and para-aortic. Because of the confirmed cancerous nodes, STAMPEDE was again recommended. I declined for the same reasons, and additionally, I had realized a post ePLND nadir of <0.010, the value I choose to rely on for best indicator.

A disclosure, I was pre-disposed to skepticism regarding US medical politics and trial intentions. After my RP, I wanted imaging before my next treatment decision. My ‘application’ for US PSMA PET trial was declined because my PSA was “too low” - 0.1. I was aware that PSMA PETs were already well-established in Europe and several South American countries and used with usPSAs as low as 0.03.

[swwags]

Most CT's are for castrate resistant PCA, not hormone sensitive. Then the other exclusions apply, such as thyroid disease, MM, etc. Lastly, if I do find one that I may qualify for, they are too far away. Many of the CT's I've looked at are simply rehashing old trials by adding an additional component but do not attempt to improve quality of life. The cynic in me thinks those are just money grabs.

[j-o-h-n]

I guess the 10 year trial (ordeal) with my ex-wife left me in fear of any and all trials.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Linebacker75 in reply to j-o-h-n]

I hear ya there brother. I got married 49 years ago this month but the trial part didn’t kick in until about 10 yrs ago. I guess mine was a delayed trial without the clinical part. ✌️

[addicted2cycling in reply to Linebacker75]

Linebacker75 wrote -- " I hear ya there brother. I got married 49 years ago this month ... "

Congratulations !!!

IMO, marriage is a trial until death do us part or we wind up goin' through the BIG D and I DON'T MEAN DALLAS. 😉

youtube.com/watch?v=XXKvy5N...(Not working as expected?)

BTW, our trial will be 51 years next Sunday celebrated on a cruise and I'm banking that the PCa will not kill me, **wild hogs will not kill me** and we will not be goin' through the BIG D 'cause I have another cruise booked for 2025 since that's also our 75th Birthday Year beside 52 years married.

[Linebacker75 in reply to addicted2cycling]

Congratulations to you and your bride A2C!! 51 yrs of marriage is quite the accomplishment. I love a good cruise but my wife isn’t a fan so we haven’t gone on one in about 10 yrs. I think you should book one every year for the next 10 yes. Y’all enjoy✌️

[Gabby643 in reply to j-o-h-n]

Rim shot!

[GAdrummer]

My husband had difficulty getting into the trial he wanted because the researcher was having problems getting that trial approved and switched him to a different trial that did much more damage than good. He had to be dropped because of utterly failing the neurology test. Then he wasn't eligible for another trial. His MO retired and the new MO arrived with "tickets" in his back pocket. Apparently, the MOs trade "tickets" to different trials. My husband had to wait until there were no more treatments appropriate to his case left to try, before his MO could use his Keytruda "ticket."

[Darryl Partner in reply to GAdrummer]

Thanks for your response. Please explain what you mean when you say “ticket.”

[GAdrummer in reply to Darryl]

"ticket" is my word. The way the MO talked, he may have said "'card' in my back pocket", that represented a patient slot in a particular trial that could be traded or saved for a particular patient. This was a new concept for me.

[dmt1121]

I am not quite there yet but have been told about a couple that might apply to me. My concerns center around the side effects versus benefits. I want there to be some level of confidence and data to tell me that the side effects aren't terrible and the projected extension of my OS will be worthwhile.

[Don_1213]

Because the one the urologist wanted me to join would have meant limiting and delaying treatment to a PCa with a Gleason of 9. It didn't seem like a good idea waiting around to see when the trial would accept me and when their treatment would start.

The urologist gave me the distinct impression that he was disappointed to not have in his care someone in the trial. It seems as if having his name with the results was more important than treating me quickly.

[WeatherLook]

Assume I would not qualify due to comorbidities. ESRD on hemodialysis

[Big_Mcc]

I tried to take part in a UK trial and was told I had to be referred by my oncologist. Spoke to my oncologist who told me the trial was not suited for me and I should do docetaxel first. In the end I gave in on the assumption that he knew best based on his experience but now I am not so sure of his motivation. Docetaxel done 2023 so now waiting to see if I relapse or not.

[Maxone73]

they are not that available around the globe (even if now I think there is a platform that intends to involve also pharmacies), too many prerequisites (which sometimes is understandable)....but what gets on my nerves is that you must be referred to them by an oncologist even if you have all your paperwork, you cannot decide what to do with your life

[swwags]

I'll add another. Patient expenses should be covered by the trial, no exception. Those sponsoring the trial profit if successful. We read and hear about how much research costs. Wrap us into the expense.

[Tony666]

it might be advantageous to ask the inverse question as well - if you were on a trial what most influenced you to do it? For me, it was 1) recommended by a doctor I trusted, 2) the trial doctor made themselves available to meet and discuss, 3) the trial doctor was flexible (willing to give me bicalutimide until I qualified), 4) it was clear that it would be SOC+ (no worse off than if I did SOC and possibly better).

[Healer73]

I must be too old at 78 since I get turned down on the ones I applied for when asked to take the survey.

[Linebacker75]

Darryl,

I was offered a trial when 1st diagnosed in 2012 but declined. Back then all I wanted was a surgeon to “cut it out of me” and to never look back. I was very ignorant of the PCa treatment process and MDA obliged me with the surgery. Today, 12 yrs later I’m post surgery, post radiation, on Lupron and wishing I could have a do over. Gary

[Darryl Partner]

thanks for sharing this

[TeleGuy]

I considered one trial that didn’t seem right to me, and I enrolled in one that seemed right but didn’t work, or at least for long.

Two negative things for me: trials like to use bone and CT scans rather than modern PSMA and FDG PET. I don’t like all the radiation from bone scans just so they can compare against old studies. The other thing is that they often don’t consider the needs of those traveling for treatment. Having to be somewhere every week is impossible when the distances are long.

[julianc]

I participated in Master trial (sling vs artificial urinary sphinter), my standard option in UK would have been AUS but i preferred a sling and this was they way to get it.I considered a trial looking at adjuvant RT for T3 stage but decided against it as the possible side effects of RT seemed to much to gamble on.

[MoonRocket]

I'm not ready, as in a candidate, for clinical trials.When a clinical trial that comes forth that I feel is worth while, I will discuss with my MO about participating.

[ellie2211]

The parameters are very strict and limit access. my dad participated on a trial that wouldn't work with his body. It was working against the cancer and should've just been held for a bit. But he was taken off due to limiting reactions