Help Finding Clinical Trials

This announcement brings up memories of two other drugs that were in the PanCan.org Precision Promise Trial Platform as phase III candidates a few years ago. The first one was CPI-613 (Devimistat) by Raphael Pharmaceutical. It was looking very promising in the phase II portion of its trial. It received fast-track status and the Biopharmaceutical company began making plans to bring it to market by hiring executives, support staff for ramping up production and distribution. But when the data was evaluated, it showed no better performance than existing standard of care to which it was compared. What was different between the phase II and phase III portions of the trials? In a phase II trial, the inclusion/exclusion criteria is skewed to accepting healthier patients. Phase III trials are more “real world” accepting patients that are more I’ll with the disease. When the data of the phase III cohort was compared to the control group receiving standard of care, there was no significant difference and in some patients, a slightly worse outcome resulted.

In another Precision Promise trial testing the small molecule drug SM-88 (Racemytyrosine) from Tyme Pharmaceutical, it too looked very promising. The same scenario of no statistical difference was demonstrated in the phase III trial after phase II results looked so promising.

This is all overwhelming. My brother in law was just diagnosed after going to E.R. for something completely unrelated. So far it has looked like this:
1. Go to E.R. for something unrelated and they do a CT Scan which shows something unusual.
2. They go in to do a biopsy but when they get in there, they don't see it so they just pull back out and schedule an MRI to double check.
3. MRI indicates there is something there. They reschedule the biopsy and go back in to take the biopsy.
4. They think there is something going on with the biopsy but it wasn't clear so they send the results to the UW Wisconsin team to look.
5. The night of the biopsy, he develops painful pancreatitis and ends up in the hospital.
6. A day later they tell him while he's still in the hospital that he has pancreatic cancer. When asked about the stage, they say it's 2B.... but telling us it's very early on.

.It feels like he's been put into a cattle prodding line now. A port is going in on Thursday and he'll start Chemo. I don't feel like they have been thorough enough. So much uncertainty and now he's getting a port put in? Looking to get a second opinion. Spoke with insurance company today. The spot in him is about an inch and a half by an inch big. It's not near the blood vessels. Why don't they just take that out? Why waste the next 5 months shrinking it? I know this may sound ignorant but I'm trying to understand. Does everyone who receives this diagnosis go directly into chemo?
Please help.

I'm no expert on the possibility of surgery, as I don't qualify. However, if the CT and the MRI show a tumor and the biopsy confirms cancer, then yes, chemo is likely the next step. People on this board have said that typically, MDs want to shrink the main tumor as much as possible before attempting to remove it. Did they mention the possible procedure? All I've read about is the Whipple. Many people on this board have posted about that procedure, so you can likely do a search and find posts with more info.

@lrymer , I'm sorry to hear about this, but I can share what I know. I was in a similar situation and also felt like a cow getting prodded somewhere with no idea where I was going.

No time to retype my story tonight, but I sent you a Direct Message with my contact info if you want to talk asap this week. Will share what I know.

Current research shows surgery is likely more curative with chemo upfront. The logic seems to be that it is systemic so simply removing an active tumor may not end the disease .
Although, many very long term survivors I have met were “one and done” with a successful whipple. Every case is different.

Went through this with my husband in January. Went to ER for stomach pain and CT showed spot on head of pancreas. He was diagnosed as Stage 1B. They immediately did the Whipple procedure and is currently undergoing 12 treatments of chemotherapy. It is a long, rough road ahead. Please reach out if you have any questions. Praying for you ALL.

Two sides of an interesting debate, between two prominent physicians at a cancer conference:

Dr. Jordan Berlin (Vanderbilt), in favor of neoadjuvant chemo followed by surgery:
https://youtu.be/naQ-HlZbEoI

Dr. Matthew Katz (MD Anderson), in favor of surgery first (when appropriate):
https://youtu.be/nd1l5-GrdVQ

As @gamaryanne states, the logic is that the cancer has already micro-metastasized elsewhere by the time it is diagnosed in the pancreas. Surgery first on the pancreas only would not treat malignant cells that have gone elsewhere, and recovery from the surgery would delay addressing them.

The counterpoint is that maybe it hasn't metastasized anywhere yet, but could progress and metastasize if the chemo is not effective. That point is also addressed in a different conference/debate here:
https://youtu.be/fv4Q6iQF0Og

Having gone the neoadjuvant route myself (6 months of Folfirinox followed by Whipple) and then had a recurrence 3.5 months later, I wish I had done the surgery first, and had total removal of the pancreas rather than just partial (Whipple).

My thoughts are basically:

1) If they had cut out the entire pancreas, cancer could not have come back in my remaining pancreas.

2) If I'm already on insulin and will be on enzymes after Whipple, that part will be no different with total removal, except maybe in quantities.

3) I would rather treat the disease I KNOW is there (pancreas) with a procedure (surgery) I KNOW will remove it than treat disease that MIGHT be there (mets elsewhere) with a regimen (chemo) that MIGHT kill it.

Even though any of the pancreas surgeries have a difficult recovery that delays the start of adjuvant chemo, I would (now) inquire about a combined procedure like HIPEC on the first pass (full internal abdominal wash with chemo during the initial surgery) as a possible way of targeting the micro-mets. It will probably be at least 5-6 weeks after surgery before chemo can start or resume.

But with all that said, I am just a statistically irrelevant sample of one, who did not have any chemo or radiation after my Whipple. The studies cited in the videos still generally favor the neoadjuvant chemo before surgery for larger populations, but you never know who's going to be the exception.

The chemo port will probably come in handy; not a big deal to have it inserted asap.

You will want to find a good surgeon at a center of excellence, and consult him/her asap, because wait times can be long to actually see one. That's one reason to start chemo right away -- it's available.

Even if your BIL starts chemo first, the right surgeon can stop chemo whevever appropriate to do surgery. 3-6 months is a common interval, but less is possible. They generally want 30 days for chemo to clear out of your system before doing surgery, so that would be the only delay to consider if you had a good surgeon willing to go right away.

Sorry to ramble; I'll try to clear it up a little more later. Best wishes for now!

Good news. Thanks for sharing your journey!