Options for Peritoneal Mets

I was in this clinical trial: https://clinicaltrials.gov/study/NCT05922930
last year at MD Anderson.

The trial focus was on peritoneal mets, provided they express the TROP2 protein. The one-time treatment involves adding another port (similar to a traditional chemo port) to access your abdominal / peritoneal space. (My port was placed near the bottom of my righthand rib cage.) Then, after giving approximately three days of chemo to deplete your immune system, they infuse specially engineered Natural Killer cells into your peritoneum, then shake and swish your belly around for a while, let it marinate in there for about 6 weeks, and redo your cancer tests (CA19-9, Signatera, CT). It involves a 3-week inpatient stay to test your blood and peritoneal fluid every day, and also to make sure you don't have a critical immune reaction to the NK cells.

On the bright side, MD Anderson is an amazing facility, and the treatment was painless. My only side effects were a little nausea on the last day of the 3-day chemo, then some sleep interruption from all the midnight wake-ups to draw blood.

On the down side, it didn't work for me at all. The nature of clinical trials; sigh... My cancer progressed and I had to return to some SoC treatments (and after developing resistance to those, a KRAS inhibitor clinical trial). I understand MDACC paused the NK trial later, and resumed with a re-engineered (more potent) NK stem cell and increased the dose. It appears the trial is still open and enrolling a few select patients. I can provide more info if you're interested.

I had the IP (intraperitoneal) port removed about 9 months after exiting the trial. I had kept it in place with hopes that one of my providers would be willing to try a "HIPEC-like" treatment using the port -- basically just infusing some heated chemo there to achieve direct contact with the cancer cells, while foregoing the cytoreductive surgery or surgically "open" application of chemo. One of my PAs told me there were a lot more risks to the HIPEC chemo than I was aware of; apparently it can be rather toxic to various organs it comes into contact with. I didn't get details, but my provider doesn't do much HIPEC and seemed to be distancing themselves from it.

Anyway... I finally gave up and had the port removed to make sleeping on my side more comfortable. Shortly after the removal, I learned that some alternative cancer treatment centers offer intraperitoneal infusions of Ivermectin and/or Mebendazole. Although there is no reliable clinical evidence I'm aware of to support such treatment, as a stage-4 patient, I would have given it a try.

As @val64 mentions, it's important to know what mutations you and your cancer have. I have a germline ATM mutation and a somatic KRAS G12D mutation. I declined an ATR inhibitor trial 2 1/2 years ago because of the timing and travel requirements. It wasn't until later that we learned of my KRAS mutation. Multiple oncologists emphasized how common and strong a driver KRAS is in pancreatic adenocarcinoma, and that targeting it would likely bring more benefit than targeting ATM/ATR. Fortunately, the pharmaceutical industry is working overtime on various RAS inhibitors, and I was able to get into a trial close to home a few weeks ago, taking only oral medications daily (no infusions!). It's too early to know how well it's working (no Signatera or CT yet), but my CA19-9 levels are dropping at an encouraging rate. 🙂 Nausea and diarrhea are the only notable side effects, but well worth the inconvenience if the drug is actually working.

When my endometrial cancer first recurred with peritoneal carcinomatosis, I also tried to bring up HIPEC and was told that they only do that for ovarian cancer. HIPEC is not in the treatment guidelines for other cancer types, and US insurance won't pay for it.

Later, I was Googling, and I discovered that in Germany they do surgery and HIPEC for peritoneal carcinomatosis as long as you don't have mets elsewhere. And there are medical tourism companies that will help you arrange it for ~$60-90K. I might have tried it if I had realized this earlier (I'm not going to need my retirement savings), but I now have liver mets so am ineligible. So it's one clinical trial after the next for me.

You should try looking into clinical trials, particularly if your tumor has a KRAS mutation. If it has an ATM mutation, there are also ATR inhibitor trials. (I was in one of these for 6 months. The initial dose worked great on the cancer. But it also landed me in the hospital within two weeks, and the reduced dose after that didn't work so well.)

@val64 thank you for sharing your experience. I have since got to a few more 2nd opinions about HIPEC and all saying it's very invasive and surgeons wouldn't even attempt it unless CA 19-9 is stabilized which mine is not now.

Would be interested to learn more about the HIPEC in Germany if you still have the info handy.

How are you doing on clinical trials? The thing about KRAS trials I have found is once you were on one, you become ineligible for others. All the best!

I was in this clinical trial: https://clinicaltrials.gov/study/NCT05922930
last year at MD Anderson.

The trial focus was on peritoneal mets, provided they express the TROP2 protein. The one-time treatment involves adding another port (similar to a traditional chemo port) to access your abdominal / peritoneal space. (My port was placed near the bottom of my righthand rib cage.) Then, after giving approximately three days of chemo to deplete your immune system, they infuse specially engineered Natural Killer cells into your peritoneum, then shake and swish your belly around for a while, let it marinate in there for about 6 weeks, and redo your cancer tests (CA19-9, Signatera, CT). It involves a 3-week inpatient stay to test your blood and peritoneal fluid every day, and also to make sure you don't have a critical immune reaction to the NK cells.

On the bright side, MD Anderson is an amazing facility, and the treatment was painless. My only side effects were a little nausea on the last day of the 3-day chemo, then some sleep interruption from all the midnight wake-ups to draw blood.

On the down side, it didn't work for me at all. The nature of clinical trials; sigh... My cancer progressed and I had to return to some SoC treatments (and after developing resistance to those, a KRAS inhibitor clinical trial). I understand MDACC paused the NK trial later, and resumed with a re-engineered (more potent) NK stem cell and increased the dose. It appears the trial is still open and enrolling a few select patients. I can provide more info if you're interested.

I had the IP (intraperitoneal) port removed about 9 months after exiting the trial. I had kept it in place with hopes that one of my providers would be willing to try a "HIPEC-like" treatment using the port -- basically just infusing some heated chemo there to achieve direct contact with the cancer cells, while foregoing the cytoreductive surgery or surgically "open" application of chemo. One of my PAs told me there were a lot more risks to the HIPEC chemo than I was aware of; apparently it can be rather toxic to various organs it comes into contact with. I didn't get details, but my provider doesn't do much HIPEC and seemed to be distancing themselves from it.

Anyway... I finally gave up and had the port removed to make sleeping on my side more comfortable. Shortly after the removal, I learned that some alternative cancer treatment centers offer intraperitoneal infusions of Ivermectin and/or Mebendazole. Although there is no reliable clinical evidence I'm aware of to support such treatment, as a stage-4 patient, I would have given it a try.

As @val64 mentions, it's important to know what mutations you and your cancer have. I have a germline ATM mutation and a somatic KRAS G12D mutation. I declined an ATR inhibitor trial 2 1/2 years ago because of the timing and travel requirements. It wasn't until later that we learned of my KRAS mutation. Multiple oncologists emphasized how common and strong a driver KRAS is in pancreatic adenocarcinoma, and that targeting it would likely bring more benefit than targeting ATM/ATR. Fortunately, the pharmaceutical industry is working overtime on various RAS inhibitors, and I was able to get into a trial close to home a few weeks ago, taking only oral medications daily (no infusions!). It's too early to know how well it's working (no Signatera or CT yet), but my CA19-9 levels are dropping at an encouraging rate. 🙂 Nausea and diarrhea are the only notable side effects, but well worth the inconvenience if the drug is actually working.

@markymarkfl thank you so much for sharing your experience... I forgot to mention I do have KRAS G12D and came off RMC-9805 trial (which sounds like what you are in now?). It worked wonders for 9 months before losing its steam (I hope it works longer for you!). Now I am back to FOLFOX which wipes me out completely with not even a good day between cycles and not sure if it will work (praying to buy more time).

I am indeed interested in the trial you mentioned and would appreciate if you can provide more info. Like you, as a stage-4, I am willing to try anything. Thank you and sending prayers!

@markymarkfl Thanks, as always, for your detailed and insightful comments. I too would like to know what trial you are in as my wife also has the G12D mutation and we are currently looking for trials. TYIA!

@gsf , I'm in the MOONRAY clinical trial, https://www.clinicaltrials.gov/study/NCT06586515 .

It's a KRAS G12D inhibitor administered by oral tablets from Eli Lilly. I take 6 per day at bedtime, along with a pill to control nausea and diarrhea. Too soon for my first scan, but CA19-9 has gone down quite a bit.

The travel requirements aren't bad. The first month has a couple all-day trips to the center for hourly blood tests, but after that, it's about one trip per month.