My HIPEC experience and pancreatic cancer

Posted by NeverGiveUp @bobsrdoch, Jun 14, 2023

I had mentioned having the HIPEC procedure in one of the other discussions and there was interest from others in more discussion, so here goes. Pancreatic cancer was detected in my peritoneal fluid in June of 2022. After 14 chemo treatments of folfirinox, I was a candidate for the HIPEC procedure. I had my first HIPEC procedure early January of this year (2023) at Mayo in Rochester. I was out for roughly 4 hours, with the actual HIPEC procedure taking I think around 2 hours. The procedure also involved an overnight in the hospital for observation. Post procedure, I was a bit bloated and had a little initial abdominal discomfort and was on a 10-pound lifting restriction for 4 weeks. I must add the disclaimer though that I've been told I'm not the typical patient ... I've had no ill effects from the chemo, HIPEC, radiation, and major surgery that I've had. After the first HIPEC, I had radiation followed by major surgery to remove my spleen, gallbladder, tumor debulking, internal radiation, and another HIPEC in late March of 2023. Now I'm on a bloodwork and scan monitoring schedule every 3 months.

I am so very grateful to the doctors and support team at Mayo in Rochester for believing in me and not giving up on me. They truly live the Mayo motto, "The needs of the patient come first," and are not afraid to take a chance on someone like me who had been told by other doctors that I had no chance of surviving this cancer. I know that I'm not necessarily cured ... but I do know that with this team behind me ... I've got a chance!

The link to read up some in the HIPEC procedure is:
https://cancerblog.mayoclinic.org/2023/01/18/new-chemotherapy-approach-for-late-stage-cancers/

NEVER GIVE UP!

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

Signatera at .04 positive and tumor marker up at 207. Scans identified a penny-size anterior met on liver. Possible second (tik tac size) close to surgical site. John’s Hopkins and my doctors say GEMZAR now to target systemic attitude of the disease. 2nd round tomorrow and will discuss what is next if shrinkage shows. They are now saying two cycles (2 months) before discussing next steps. I have KRAS which does not seem to have solid trials available once one has had curative surgeries. If anyone knows of something different, pls post. Much interesting research underway at JH for BRCA mutations

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@gamaryanne

Signatera at .04 positive and tumor marker up at 207. Scans identified a penny-size anterior met on liver. Possible second (tik tac size) close to surgical site. John’s Hopkins and my doctors say GEMZAR now to target systemic attitude of the disease. 2nd round tomorrow and will discuss what is next if shrinkage shows. They are now saying two cycles (2 months) before discussing next steps. I have KRAS which does not seem to have solid trials available once one has had curative surgeries. If anyone knows of something different, pls post. Much interesting research underway at JH for BRCA mutations

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@gamaryanne , sorry to hear that. It sounds a lot like my story -- NED for 3.5 months including Signatera negative with similar CA9-9 levels and trends, then a recurrence confirmed at original site plus mets. 🙁

I don't know if you could handle a treatment more aggressive than GEMZAR alone, or would want to. In my case, the immediate chemo recommendation was for biweekly Gemzar (Gemcitabine) plus Abraxane, with Cisplatin on top of that to target my ATM mutation. It has brought my CA19-9 down from about 677 to 55 over 5 months and Signatera down from 0.14 to 0.00 (negative), but still a little iffy on the MRI. I will know more in a week (new scans and new Signatera).

You might qualify for this trial https://classic.clinicaltrials.gov/ct2/show/NCT04605913 which adds Tumor Treatment Fields (TTF) equipment to my regimen above, but appears to only be available at Mayo in Jacksonville.

There's a new and exciting trial underway using CAR T cells called BASECAMP https://classic.clinicaltrials.gov/ct2/show/NCT04981119 which would check your blood to see if you're eligible for treatment in a follow-on study called EVEREST https://classic.clinicaltrials.gov/ct2/show/NCT05736731 .

Of course, you're reading the HIPEC thread, so depending on the location and extent of your mets, and your ability to tolerate the surgery, this might also be an option if you hook up with the right medical team. I appear to be ineligible for EVEREST, but similar cellular trials are said to be in the works. Until something like that comes through, I will continue barking up the other trees (TTF or HIPEC).

If your only other confirmed mets are in the liver, maybe they could be treated concurrently with radiation or Y-90... (?)

Wishing you the best, and hoping you'll keep us posted.

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I see my surgeon this week. He is the “chief cook”on my case.
I will see if another Y90 is being considered or lap surgery. Of course, we would want to clear my system as much as possible before any surgery.

I am going to ask about the biweekly Gemzar with displaying. I think I could handle it!

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