Clinical Trials

jamyers97

Wondering what the experience of others has been with finding clinical trials. My wife was diagnosed with Stage III CRC and has resection and 12 rounds of chemo. She was clear for 2 1/2 years then cancer showed up in some lymph nodes. 12 more rounds of treatment and she again had clear scans, but a positive DTDNA test. Cancer then recurred in her liver and was radiated. She is again "cancer free" but we know with the continued positive CTDNA that it is just a matter of time. In any event she has had it with chemo and obviously it not going to result in a cure.

To get to the point, the doctor and the clinic have been of no help in helping to identify clinical trials which may be promising in her situation. We keep our eyes on clinicaltrials.gov but that can be difficult to navigate as a layman. Shouldn't there be qualified resources out there to help match patients to trials?

NewHere

Hi

I have had four clinical trials in the last 10 years (I just started my 11th year, Stage IV. The fourth drug trial saved my life in 2022.).

1.) The tests you had may include the following, but just in case. Try to get a liquid biopsy/genetic testing. Foundation https://www.foundationmedicine.com/test/foundationone-cdx is one place I had that done. It is about a 40 page report and lists actionable genes. What drugs work, what drugs don’t, what trials may be out there.

Another place is https://guardanthealth.com/ . I have had a liquid biopsy there, though I am waiting for results. I am not quite sure what is provided back. Something else to note - cancer can change mutations over time which opens up other treatments. My cancer is moving closer to MSI from MSS, which may open up more treatments.

2.) If your doctors are not helping, you can try for a second opinion which may list trials. grandrounds.com has a turnkey second opinion. The price on which places give your the second.

3.) I am so sorry that your doctors and clinic is not being helpful. That being said, the American Cancer Society, or other group, may be able to help you with the search on cancer.gov/clinical trials.gov. Also if you want to give it a go, go to this page. https://www.cancer.gov/research/participate/clinical-trials-search/r?loc=1&rl=2&st=C4910&t=C2955&z=10022&zp=500 (not sure why it is showing facebook. It is link to the trials. Open up the modify search criteria by clicking on it. Change the zip code (I put one in New York City) and check miles. I usually go with the general search to start “Colorectal Cancer”, the zip code, 500 miles. That is how that link is set-up. That has about 46 trials within 500 miles. I could add my Stage and other specifics, but I go broad as possible, then narrow it down. Hopefully your doctors can at least give you some assistance if you find something that looks promising to you. It can be a bit daunting at first, but it gets easier.

Check this one for instance https://www.cancer.gov/research/participate/clinical-trials-search/v?id=NCI-2021-08397&loc=1&rl=2&st=C4910&t=C2955&z=10022&zp=500 (again, not sure why facebook) it is “Using Cancer Cells in the Blood (ctDNA) to Determine the Type of Chemotherapy that will Benefit Patients who Have Had Surgery for Colon Cancer, (CIRCULATE-NORTH AMERICA)” Phase II/III (the later the Phase, the further along it is to getting approval. (The trial that save me was late Phase I/Early Phase II.)

I will try to check back in in case you have any questions.

jamyers97

Thank you. I will look into the resources that you cite. I still wonder why the process of matching patients to trials seems to be so "do it yourself" and haphazard. I would think some of Elon Musk's DOGE people could solve it in a couple of months.