← Return to Clinical Trials: they are not designed only to be a “last resort”

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@markymarkfl

Yep, my trial was a single-site trial at MD Anderson in Houston. Amazing place with so much cutting-edge work going on.

The trial was independent of traditional mutations, just requiring tumor tissue to express the TROP2 protein. They have a custom line of stem cells derived from preserved/donated umbilical cord blood. The Natural Killer (NK) cells are engineered to recognize and attack cells that express TROP2 while leaving healthy cells alone.

They used a similar approach with good success a few years ago to target other cancer types, and I think the delivery method was intravenous. My trial was open for 3 diseases (two gyno types: ovarian cancer and mesonephric-like adenocarcinoma) and pancreatic, as long as there was metastasis to the peritoneum (common in all 3 cancer types). These cells were injected into the peritoneal space rather than intravenously, with the idea they would make direct physical contact there, but also be absorbed into the bloodstream and be distributed systemically.

It was a Phase-1, first-in-human (FIH) trial, and I was patient #5 overall, #2 for pancreatic, and at the 2nd of 3 planned dose levels to be tested. There was really good in-vitro data for it, and good results from similar intravenous treatment with other cancer types, but very little else to go on other than faith. I didn't really have a good opportunity to wait for the next dose level or success signals from previous patients.

I don't have any news about how it's going for other participants, but the 4-month chemo holiday without a successful response in the trial may be my eventual undoing. That stomach blockage I mentioned is now way too tight to pass a stent (much less liquids or food) through, so we're adding some radiation to try and reduce it enough for a stent. Low odds, but we might see results in a few weeks. Meanwhile, I'm not allowed to eat or drink anything but ice chips. I've got a new gastric drain/vent tube inserted to relieve stomach pressure, and a new chest port to get central nutrition (TPN) delivered into a vein. I miss coffee!!!

Another downside to this is that I've lost about 20 pounds, a lot of muscle mass, and since I can't even take an oral pill, there are a lot of trials I won't qualify for. 🙁

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Replies to "Yep, my trial was a single-site trial at MD Anderson in Houston. Amazing place with so..."

@markymarkfl
This is so distressing to hear. I wish there was some way to help. Is MD Anderson making a referral to the doctor in New York? You are in the hospital in Houston still (I assume) ?
One of their top radiology oncologists was at the symposium this weekend-surely he is being called in to consult on this!
I will find his name. Has SBRT been considered?

In 2022 I had a TPN line for 3 weeks during Thanksgiving holiday no less! It was a trial of patience to help a bit with the cooking and to sit at table with my IV and watch others enjoy the feast! I lost weight during that time but gained it all back after my pancreatic stent was put in. We have an incredible GI here, Dr. Korc (Newport Beach) that you may want to give a call to as far as options with placing stents. Everyone (drs) that I’ve spoken with in the past can tell you he’s an incredible dr.
Going into clinical trials, given the aggressive nature of our disease in particular, takes a lot of mental strength and hope. We can’t give up on the hope and I want to let you know that I’m praying my rosary right now for your continued strength and for your wife as well. As far as the coffee, I get you Mark! I had to give it up about 13 years because of some dumb electrophysiology cardiac arrhythmia I have which is induced by any caffeine products. I raise my Starbucks to you virtually!