Options for Peritoneal Mets

Posted by rockie66 @rockie66, 2 days ago

Hi I had FFX prior to whipple but cancer came back and I am now a stage 4 PDAC patient with peritoneal mets. I had a moderate response to FFX prior to whipple but never tried G/A so we were hoping it would at least work some. Unfortunately, it barely moved the CA 19-9. Now we are switching to FOLFOX and after just one cycle, it wiped me out and CA 19-9 keep doubling each week at a scary speed. I also feel symptomatic and have to start take painkillers for the first time since surgery.

My local oncologist is saying my mets is becoming chemo-resistant. I brought up HIPEC/PIPAC/IP Chemo but she was dismissive saying those are just fancier ways of delivering same chemo so it wouldn't work. I read systematic chemo doesn't work well with peritoneal mets anyway so am looking to see what other options there are for patients like me? There are HIPEC and PIPAC but I don't think I qualify HIPEC because my CA 19-9 is not controlled yet.

Has anyone tried PIPAC or IP (intro-peritoneum) chemo and would like to share their experience? It seems it's only done in clinical trial setting for PDAC. It's scary to know that I am running out of options. Thank you so much!

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

val64 | @val64 | 2 days ago

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.)

markymarkfl | @markymarkfl | 3 hours ago

@rockie66 ,

I typed in a really long reply, but the site won't post it until it gets reviewed.

Fortunately, I had a copy of all the text and pasted it into a direct private message to you. The site rejected that message as well, saying it violated some terms and conditions of site usage, without giving me any idea what the offending test was.

I think they'll eventually make things right; please stay tuned.