Help Finding Clinical Trials

Mine is Heriditary and came down through family.apparently my fathers side.My grandfather,father and brother have all died of cancer in their 60's.Mine is also in my bile duct,I understand that is where it usually is.

I know the world of KRAS mutation is moving slow but anyone following the 3 types of kras mutation trials

Welcome, @askretka. Do you have pancreatic cancer? Are you looking into clinical trials?

Not as great results for those who had their spleens removed! 🙁 I fall into that category.

@frygirl777
I also fall into the category of spleen removed plus have had liver Mets removed. I am going to John’s Hopkins this month for a consult. Will let you know what I find via a vis ongoing maintenance drugs with KRAS mutation.

@frygirl777
I also fall into the category of spleen removed plus have had liver Mets removed. I am going to John’s Hopkins this month for a consult. Will let you know what I find via a vis ongoing maintenance drugs with KRAS mutation.

@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!

In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC patients, which is one of the worst cancers, and 3/3 “safety run-in” patients showed about 50% reduction in their tumor sizes in just 4 months!This is great 🙂

Early days by Oncolytics Biotech and Roche.

PanCan will be announcing details of a new Phase 3 trial with Oncolytics for their drug Pelareorep Biotech and a Checkpoint Inhibitor
On around 20th of September.
Oncolytics Biotech was granted FastTrack approval in December of 2022. The Checkpoint Inhibitor hasn't been decided yet.