Help Finding Clinical Trials

@bethf
I've heard the term before, and even seen an advertisement for one, but don't recall what, who, or where. Sorry about that. 🙁

You could ask your insurance company if they have a specific resource for that. I have my insurance through a huge employer, and they have a "Cancer Care Concierge" program that at least got me an unbiased second opinion quickly from one of their "Centers of Excellence" (a very reputable hospital) as well as reimbursing some of my travel to a different center of excellence.

You're absolutely right about the difficulty of finding appropriate trials, as well as the need to move fast.

My experience in talking to oncologists at 4 prominent institutions was that they pretty much only tell you about trials at their own institution, not the best one you could get FOR YOU at another institution. With the "unbiased" second opinion I was able to get, the doctor was able to at least tell me the pros and cons of the trials available at the other centers I had talked to. (Disclaimer: His own hospital was also preparing a very relevant trial, and he made sure I knew about that too.)

My experience also is that every delay is a bad delay. PC will spread while you blink. Being Stage 4 (as I am), you probably need to be on a systemic chemo already, but you don't want to be on a therapy that will disqualify you from appropriate trials. What I learned is that Phase 1 trials (and some Phase 2 trials) are not as strict as Phase 3 trials are on who participates, so you have a better chance of getting into those. You also don't risk getting blindly "placeboed" as in a Phase 3, but the effectiveness of the Phase 1/2 treatments are less well studied.

Another frustration I experienced is that some of the institutions that have multiple centers are not supporting every trial at every location. In other words, what you see on their web site might not be available to you close to home. Sometimes it works the other way. Business organizations like "US Oncology" have multiple locations in the USA. They might have a trial listed only at their headquarters location when it's actually available at the local member oncology office in your back yard.

In the interest of moving things along, you should already have as much genetic testing done as possible on your tumor, since so many of the trials now are targeted toward specific mutations. The Invitae "germline" test will identify mutations you inherited from your parents. The Guardant "somatic" tests will identify mutations and properties in your blood from DNA shed by the tumor and changes it has accumulated since it began growing. Mutations are one of the key search criteria now for any trial.

The US government's clinical trials site is a good place to start:
https://clinicaltrials.gov/

They also have a "beta" test version of a new, improved site that I just found yesterday:
htt_ps://beta.clinicaltrial_.gov/

The PANCAN organization also provides assistance with trial searches, and they have some really good, supportive patient advocates and case managers for FREE:
https://pancan.org/
PANCAN will do the search for you instead of giving you free reign with their search engine, which is what I'd rather have. They find some good ones, but you can't just explore all the "what if's" that you might like to consider. On the other hand, if they find one close to you, it may be the perfect fit. Either way, I recommend calling or emailing them and getting connected with one of their case managers.

Finally, since most of the research centers will only tell you about trials at their own site, you might as well check their sites, since the big ones have the most active trials to offer, and since you know where they're located, it filters out the other 99 locations you wouldn't be able to travel to.

The obvious ones to consider are:
MD Anderson (various locations in Texas, and a few partners in other states)
Mayo Clinic (Florida, Arizona, Minnesota)
Cleveland Clinic (Ohio, smaller center in Florida)
Johns Hopkins Medical Center (Baltimore, DC, others?)
Dana Farber
Memorial Sloan Kettering
NY Langone
...

As with the US Government's Clinical Trials site, the websites at these institutions may also be out of date, especially with regard to posting results of closed trials and enrollment status in supposedly-open trials.

Sorry for the rant and ramble; I hope at least some of this has been useful. Hopefully someone can respond with the laser-focused reply/service we all need. Hang in there!

I have been trying to get into a trial for 11 months now.The most help I have recieved is from the National cancer Institute.If they don't have any trials specific to you they will guide you to some.they need all your records though. the trial has to be specific to you.They just notified me yesterday that they may have one for me,waiting to hear more.Make up your mind that you are NOT going to give up,get stubborn.

@markymarkfl, what a thorough and helpful reply. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you shared are not spam. 🙂 I have updated the URLs so that Beth can click the links directly.

@bethf, I concur with the information that Mark shared. Searching for clinical trials suited for your particular cancer, stage and health status is exhausting. I'll add a few pieces of info.

About clinical trial phases https://www.cancer.gov/about-cancer/treatment/clinical-trials/what-are-trials/phases

To find out if you qualify for any clinical trials at Mayo Clinic or multi-institution trials that Mayo Clinic is participating in, you can visit Mayo Clinic Clinic Trials https://www.mayo.edu/research/clinical-trials
You can also call our team who can answer questions, discuss your needs and help locate research studies that match your interests.
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

@stageivsurvivor and others shared good resources in this related discussion too:
- Is anyone participating in a clinical trial for pancreatic cancer? https://connect.mayoclinic.org/discussion/clinical-trials-1/

The Pancreatic Cancer Action Network has two ways in searching for clinical trials. The have all the Pancreatic Cancer and cyst trials consolidated on their site from the clinicaltrials.gov site. One can do a self-search entering parameters on cancer type, distance, etc. the other way is calling PanCan at 877.272.6226, M-F, 7:00am-5:00pm PT and speaking to a case manager. They interact with staff at CancerCommons.org which has a staff with a scientific background that searches for all appropriate trials and will provide a list of the best matches to one’s medical history. If a patient had molecular testing done as Next Generation Sequencing for somatic mutations/actionable biomarkers or a Liquid Biopsy for germline (inherited mutations, it helps those searching find targetable therapies.

A tip I give to those interested in a trial: don’t limit the search to one’s immediate area. There might be a well suited trial that can positively impact your life. When it may make the difference in surviving, don’t cut yourself short on options. Clinical trials reimburse travel costs. Those conducted by the NIH on its campus in Bethesda, MD fly patients in worldwide and airfare is covered. For trials sponsored at academic institutes by a pharmaceutical company, a non-profit medical research organization or the institution itself where airfare may not be provided or subsidized, there are several non-profit organizations that coordinate round-trip flights on private corporate jets with a space available status. Transportation is free for the patient and one caregiver. Organizations such as Corporate Air Angels handles the scheduling. The patient/caregiver needs to get to/from the departure airport which will be relatively close to their home. One the arrival end, the host institution advises on transportation to reach their site.

Extremely helpful. Thank you so much!

Thanks for sharing this top notch information! Your diligence is admirable

@stageivsurvivor is correct -- you can do your own search at PANCAN's website: The search page is a couple levels down from their home page, but you can go directly to it here: https://clinicaltrials.pancan.org/

I had not been to that page in a while. Their patient/caregiver option leads to pretty good self-directed searches, similar to other sites. Their Physician/HealthCareProfessional search option is open to a minor degree, but you need a special-access account to unlock many of the details. One nice thing about their site is that it's already narrowly focused on pancreatic cancers searches rather than every possible descendant from this Emperor of All Maladies (gratuitous reference to an award-winning and highly-recommended book of the same name).

I don't know how universal it is for various centers to pay the travel expenses for trials, but they (almost?) always pay for the meds. They pretty much have to pay for the experimental drugs/treatments, but when they're adding something on top of an existing "standard of care" it might be different.

There are discount options for lodging at or near many of the big centers. There's an on-campus Hope House (American Cancer Society) at some of them and they might be free or significantly cheaper than nearby hotels. There's an on-campus Marriott hotel at MD Anderson (Houston) and at Mayo Clinic (Jacksonville) that both have special deals for cancer patients (contact local hotel management for details). Mayo/Jax also has the wonderful Gabriel House next to the ACS Hope House. Some have requirements that you be accompanied by a caregiver, which is not always practical. If you're in otherwise good health, some of them will accept an exemption letter from your treating oncologist so you can travel alone if necessary.

@bethf -- Your original post had the root word I'd heard before and searched for again "Cancer Care Navigator" and "Clinical Trial Navigator." I did a quick search for those, but didn't find any personalized for-hire type services. Most were aligned with corporate or insurance company interests. PanCan provided me with the most useful/personalized info early in my search. @stageivsurvivor 's reference to CancerCommons looks very promising as well. You might start at their Services page: https://cancercommons.org/our-services/

Minor update: Southwest Airlines donates to a Medical Transportation Funding Grant program at many hospitals in different states. No surprise that MD Anderson is one of them, with both major Houston airports being hubs for SWA.

The hospital list is here: htt ps://www.southwest.com/citizenship/people/community-outreach/medical-transportation-grant-program/

As far as I can tell, you have to apply for the grant with each institution, and I'm not sure what the qualifications and availability are. I haven't yet found if SWA offers discounted travel for cancer patients undergoing treatment. It would be ideal if there were a bulk purchase option directly from any airline that included flexible scheduling and a care giver companion pass. Please post here if anyone finds one of those!

Frontier Airlines sometimes offers an unlimited (season/year?) travel pass at a reasonable price. I know they fly to Baltimore, which can get you to Johns Hopkins. But their travel restrictions, frequent delays, baggage charges, and cramped seats might not be the best for medical travel. 🙁

Thank you so much for all of your responses. I have contacted cancercommons.org and will have my first conversation with with on Monday!
Beth

May your journey go well.