1. < Cancer

How do you get into clinical trial?

Posted by val64 @val64, Jun 1 6:45am

My current treatment for metastatic endometrial cancer has failed, and the next one that my care team are planning seems very unlikely to me to work either.

I have identified a clinical trial at a different hospital in my city that I would like to enroll in. Two days ago I sent an email to the contact listed on clinicaltrials.gov, and yesterday morning I sent another email to the contact listed on the hospital's website. I realize it's only been a couple days, but I was hoping for a "Thank you for your interest; we'll get back to you in a few days/weeks" or a "Please fill out this form", but so far it's a black hole.

How long does it usually take to get a response? If these people are going to be slow, I would like to apply to other trials.

Is there a trick to getting into a clinical trial? I would not expect my care team to be much help. They're busy and are not able to (or interested in) doing extra work like this. They did suggest a clinical trial at their hospital, but there are several others that I would prefer over that.

Any advice would be welcome.

Interested in more discussions like this? Go to the Cancer Support Group.

Mentor
Laurie, Volunteer Mentor | @roch | Jun 11 8:09am

@val64
I happen to run across this web site today that helps search for clinical trial's by condition, age and location. I do not think it has been mentioned yet, if it has sorry for duplicate.
https://www.cancer.gov/research/participate/clinical-trials-search
Did you have any luck with your previous inquiries?

REPLY
1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jun 11 8:14am
In reply to @roch "@val64 I happen to run across this web site today that helps search for clinical trial's..." + (show)
@roch

@val64
I happen to run across this web site today that helps search for clinical trial's by condition, age and location. I do not think it has been mentioned yet, if it has sorry for duplicate.
https://www.cancer.gov/research/participate/clinical-trials-search
Did you have any luck with your previous inquiries?

Jump to this post

@val64 I've been thinking about and also wondering what your search for clinical trials has produced. Did you find anything in NYC?

REPLY
val64 | @val64 | Jun 11 10:48am

I have made some progress on the trial I was interested in. The contact listed on clinicaltrials.gov, which is a big CRO (so vacations and ASCO aren't issues), never responded to my emails or my voicemails, despite the fact that they claim to respond within 2 hours and by 5 PM if you leave a voice message by 3 PM. False, and false. The contact at the hospital never responded to my email either.

So I sent an email to the drug company and then called them the next day. The woman who answered the phone said neither of their trials were recruiting. 15 min later someone responded to my email and said the trial site near me was recruiting and that I should email the principal investigator. When I emailed him, I got his out-of-office message saying he was at ASCO, but 20 min later he sent me a very enthusiastic email, copied to all the appropriate people. I met with him and his team of very eager associates yesterday. (They were trying to sell me on a CAR-T trial too. No.). Now I need to have some labs and tests to make sure I meet the requirements for the trial. But I probably will, and will probably start July 1.

I think the main problem is out of date contact information. The contact at the hospital seems to have moved to a different position (although she's still there and could have forwarded my email.). The CRO may also no longer be organizing this trial, but, likewise, they could have just told me that. But nobody can be bothered.

I also emailed my current hospital regarding a trial other than the one my team had offered. No response. So this isn't an isolated problem.

I did call the NCI, which has a service to help you select clinical trials. That might be of some use, but they have the same contact information listed on clinical trials.gov, so they're not much use if you can't get in touch.

REPLY
3 replies
Mentor
Laurie, Volunteer Mentor | @roch | Jun 11 12:01pm
In reply to @val64 "I have made some progress on the trial I was interested in. The contact listed on..." + (show)
@val64

I have made some progress on the trial I was interested in. The contact listed on clinicaltrials.gov, which is a big CRO (so vacations and ASCO aren't issues), never responded to my emails or my voicemails, despite the fact that they claim to respond within 2 hours and by 5 PM if you leave a voice message by 3 PM. False, and false. The contact at the hospital never responded to my email either.

So I sent an email to the drug company and then called them the next day. The woman who answered the phone said neither of their trials were recruiting. 15 min later someone responded to my email and said the trial site near me was recruiting and that I should email the principal investigator. When I emailed him, I got his out-of-office message saying he was at ASCO, but 20 min later he sent me a very enthusiastic email, copied to all the appropriate people. I met with him and his team of very eager associates yesterday. (They were trying to sell me on a CAR-T trial too. No.). Now I need to have some labs and tests to make sure I meet the requirements for the trial. But I probably will, and will probably start July 1.

I think the main problem is out of date contact information. The contact at the hospital seems to have moved to a different position (although she's still there and could have forwarded my email.). The CRO may also no longer be organizing this trial, but, likewise, they could have just told me that. But nobody can be bothered.

I also emailed my current hospital regarding a trial other than the one my team had offered. No response. So this isn't an isolated problem.

I did call the NCI, which has a service to help you select clinical trials. That might be of some use, but they have the same contact information listed on clinical trials.gov, so they're not much use if you can't get in touch.

Jump to this post

@val64

Thank you for update.
Glad you have made contact with a clinic for a clinical trial and what a great job advocating for yourself!

Your great example of "If first do not succeed, try, try, again."

Hope your accepted and get positive results.

REPLY
markymarkfl | @markymarkfl | Jun 11 12:55pm
In reply to @val64 "I have made some progress on the trial I was interested in. The contact listed on..." + (show)
@val64

I have made some progress on the trial I was interested in. The contact listed on clinicaltrials.gov, which is a big CRO (so vacations and ASCO aren't issues), never responded to my emails or my voicemails, despite the fact that they claim to respond within 2 hours and by 5 PM if you leave a voice message by 3 PM. False, and false. The contact at the hospital never responded to my email either.

So I sent an email to the drug company and then called them the next day. The woman who answered the phone said neither of their trials were recruiting. 15 min later someone responded to my email and said the trial site near me was recruiting and that I should email the principal investigator. When I emailed him, I got his out-of-office message saying he was at ASCO, but 20 min later he sent me a very enthusiastic email, copied to all the appropriate people. I met with him and his team of very eager associates yesterday. (They were trying to sell me on a CAR-T trial too. No.). Now I need to have some labs and tests to make sure I meet the requirements for the trial. But I probably will, and will probably start July 1.

I think the main problem is out of date contact information. The contact at the hospital seems to have moved to a different position (although she's still there and could have forwarded my email.). The CRO may also no longer be organizing this trial, but, likewise, they could have just told me that. But nobody can be bothered.

I also emailed my current hospital regarding a trial other than the one my team had offered. No response. So this isn't an isolated problem.

I did call the NCI, which has a service to help you select clinical trials. That might be of some use, but they have the same contact information listed on clinical trials.gov, so they're not much use if you can't get in touch.

Jump to this post

Thank you for your persistence and for sharing it here! I'm very fortunate to be in a trial run by my oncologist at her institution. That's probably the only reason I was able to get in.

There's a point in many people's cancer battle when the treating oncologist says, "I'm sorry, but there's nothing else I can do for you."

If you haven't already been in at least one clinical trial, I don't consider the above to be an acceptable answer.

The treating oncologist who's "giving up" on you should be expected to help provide you a list of _appropriate_ (knowing your condition better than anyone else at this point) trials, AND provide the referral and other help you need getting in.

Maybe this is something patients and advocates can lobby for, and actually see it become a standard practice/expectation within 5-10 years. Leaving patients to navigate this practice on their own is just not right. As noted earlier, just _finding_ a trial is the easy part.

REPLY
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jun 11 4:52pm

@markmarkfl. That's an interesting comment about physicians/oncologists recommending clinical trials. My gynecologist who I first saw and referred me to Mayo Clinic said that this was a good choice (Mayo Clinic) on my part. The reason? Depending on the treatment recommendations I could be involved in clinical trials. I wish every doctor at the outset as well as when every other treatment has not worked would say this to their patients. It gives us Hope.

REPLY
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jun 11 4:55pm
In reply to @val64 "I have made some progress on the trial I was interested in. The contact listed on..." + (show)
@val64

I have made some progress on the trial I was interested in. The contact listed on clinicaltrials.gov, which is a big CRO (so vacations and ASCO aren't issues), never responded to my emails or my voicemails, despite the fact that they claim to respond within 2 hours and by 5 PM if you leave a voice message by 3 PM. False, and false. The contact at the hospital never responded to my email either.

So I sent an email to the drug company and then called them the next day. The woman who answered the phone said neither of their trials were recruiting. 15 min later someone responded to my email and said the trial site near me was recruiting and that I should email the principal investigator. When I emailed him, I got his out-of-office message saying he was at ASCO, but 20 min later he sent me a very enthusiastic email, copied to all the appropriate people. I met with him and his team of very eager associates yesterday. (They were trying to sell me on a CAR-T trial too. No.). Now I need to have some labs and tests to make sure I meet the requirements for the trial. But I probably will, and will probably start July 1.

I think the main problem is out of date contact information. The contact at the hospital seems to have moved to a different position (although she's still there and could have forwarded my email.). The CRO may also no longer be organizing this trial, but, likewise, they could have just told me that. But nobody can be bothered.

I also emailed my current hospital regarding a trial other than the one my team had offered. No response. So this isn't an isolated problem.

I did call the NCI, which has a service to help you select clinical trials. That might be of some use, but they have the same contact information listed on clinical trials.gov, so they're not much use if you can't get in touch.

Jump to this post

@val64 Thank you for sharing that you've found a clinical trial that I hope you can participate in. I "knew" that you would be persistent and figure out how to do this. It's unfortunate that you had to go through so much to get there. I think of the many people who do not do this and have no idea how to even go about looking in more options about clinical trials. It's discouraging that your local source had such outdated and poor information.

Fingers and toes crossed that your labs and tests will allow you to be eligible and that you start as planned on July 1.

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