My HIPEC experience and pancreatic cancer

Awesome, congrats, and thank you for the story and the link!!! Just a few of my million questions:

Summarized (correctly?)
-----------------------------------
Jun 2022: PC in peritoneal fluid
14 rounds of Folfironox
Jan 2023: HIPEC #1 @ Mayo/Rochester
??? 2023: Radiation, followed by...
??? 2023: ...major surgery to remove my spleen, gallbladder, tumor debulking, internal radiation, and
Mar 2023: HIPEC #2 @ Mayo/Rochester

1) Was the original issue PDAC, and had you already had Whipple surgery for that? (or other type of pancreas cancer and removal surgery) i.e.,

2) When they detected PC in your peritoneal fluid:

2a) Did you have any pancreas left at all, and if so, any tumor on it directly?

2b) were they already looking at fluid from a previously-inserted drain, or via percutaneous fluid biopsy for some other reason? Did you have high CA19-9 or Signatera positive steering them to check fluid?

3) Was the first HIPEC a response to recurrence after an initial surgery?

4) Which chemo drugs were used to wash out your abdomen in the first HIPEC procedure, and in the second (if different)?

5) Were the chemo drugs used in the HIPEC wash selected based on your response to prior chemo drugs or mutations you have, or does the procedure (at least Mayo's) use a one-size-fits-all standard chemo cocktail for everyone?

6) Was the "major surgery to remove my spleen, gallbladder, tumor debulking, internal radiation" performed during one of the HIPECs or separately?

7) How many tumors did they remove first in each HIPEC procedure before doing the chemo wash?

8) Were both HIPECs and other major surgery if different performed open or laparoscopically?

Sorry to dig so deep, but this topic was raised during my last consult with a surgeon, and then dismissed by my treating medical oncologist. I remain quite interested, and to repeat, very thankful for your info here!

Best wishes,

mm

I thought it might be the most readable if I post my answers below your questions …

Summarized (corrected)
———————————–
May 2022: Initial Diagnosis
Jun 2022: Exploratory LAP discovering PC in peritoneal fluid
June 2022 – Dec 2022: 14 rounds of Folfironox
Jan 2023: HIPEC #1 @ Mayo/Rochester
Feb 2023: 3 weeks of radiation and oral chemo at Mayo/Rochester
Mar 2023: Major surgery to remove my spleen, gallbladder, tumor debulking, internal radiation, and HIPEC #2 @ Mayo/Rochester

1) Was the original issue PDAC, and had you already had Whipple surgery for that? (or other type of pancreas cancer and removal surgery) i.e.,
a. The initial diagnosis was PDAC. The Appleby procedure was offered elsewhere without knowing whether it was stage 3 or 4. The surgeon that wanted to do the Appleby didn’t want to know if I was stage 3 or 4 and dismissed the need for the exploratory LAP. He said that if I was stage 4 then he wouldn’t do the surgery. Struck me that he just wanted to get another surgery in. As I was told by a very wise doctor at Mayo … “the cemetery is full of successful surgeries”. I turned the Appleby down. Other than the LAP for the staging, no surgery was performed prior to the start of the chemo.
2) When they detected PC in your peritoneal fluid:
a. Did you have any pancreas left at all, and if so, any tumor on it directly?
i. It’s still in me and partially functioning, I do take Creon to help things along. The fact that it is locally advanced and has a lot of arterial involvement threw plan A out the window a year ago. Plan B was to kill the tumor using a combination of chemo, HIPEC, external radiation, and internal radiation. Then remove my spleen, gallbladder, and debulk what they could of the tumor. They were able to drain the cyst and remove it.
b. were they already looking at fluid from a previously-inserted drain, or via percutaneous fluid biopsy for some other reason? Did you have high CA19-9 or Signatera positive steering them to check fluid?
i. The first time the fluid was looked at was the exploratory LAP for staging in early June of 2022.
3) Was the first HIPEC a response to recurrence after an initial surgery?
a. No … no initial surgery, just the next step in my treatment.
4) Which chemo drugs were used to wash out your abdomen in the first HIPEC procedure, and in the second (if different)?
a. Both HIPEC procedures used cisplatin and paclitaxel
5) Were the chemo drugs used in the HIPEC wash selected based on your response to prior chemo drugs or mutations you have, or does the procedure (at least Mayo's) use a one-size-fits-all standard chemo cocktail for everyone?
a. I have no idea how what the selection process was for the chemo drugs. I do know that to be eligible for HIPEC I had to show a positive response to my previous chemo treatments.
6) Was the "major surgery to remove my spleen, gallbladder, tumor debulking, internal radiation" performed during one of the HIPECs or separately?
a. The second HIPEC was the grand finale of the major surgery. Music in the background was ‘Take me in arms and rock me” by the Doobie Brothers (just kidding … no idea what the music was ... I was snoring)
7) How many tumors did they remove first in each HIPEC procedure before doing the chemo wash?
a. No tumors were harmed during the process. The first HIPEC was to cleanse the peritoneal area of cancer as much as possible. This was good for two reasons … the only good cancer cell is a dead cancer cell, and it helped to cleanse the area for the upcoming major surgery.
8) Were both HIPECs and other major surgery if different performed open or laparoscopically?
a. The first HIPEC was LAP, the second HIPEC was done at the end of the open major surgery.
Sorry to dig so deep, but this topic was raised during my last consult with a surgeon, and then dismissed by my treating medical oncologist. I remain quite interested, and to repeat, very thankful for your info here!

IMHO … don’t let anyone dismiss anything! I heard the same thing from my local oncologist. They wouldn’t even consider the HIPEC procedure because I was stage 4.

NEVER GIVE UP!!

Thanks again for sharing your experience and for all the detail. I'm fortunate to currently be responding well to my cisplatin and paclitaxel (plus gemcitabine), so the cocktail sounds very appropriate to my tumors. Other complications are in play, but your info gives me a lot of insight for my next discussion with the oncologist.

I'll probably have a few more questions down the road, but for now leave you again with sincere thanks, best wishes, and one of my favorite images inspired by your closing remark:

Feel free to ask questions …

I’m curious … where are you getting treatment? How long have you been at it?

Oct 2021 : Diagnosed stage 2, Resectable PDAC in pancreas head, ATM mutation
Nov 2021 - May 2022 : 12 rounds of Folfirinox (partial response)
Jun 2022 : Whipple removed 1/3 of pancreas and 22 lymph nodes, all clean
Jul 2022 - Sep 2022 : Signatera and Grail/Galleri negative, CA19-9 good early on but rising throughout
Oct 2022 : Recurrence seen (suspect) at pancreas surgical site on MRI
Nov 2022 : Biopsy of ^ surgical site is negative, declared to be pancreatitis
Dec 2022 : MRI concludes recurrent tumor; possible met identified; CA19-9 rising faster; Signatera positive
Jan 2023 : CT confirms recurrent tumor and met(s), CA19-9 exploding (near 700)
Jan 2023 : Start chemo (Gemcitabine + Abraxane + Cisplatin)
Mar 2023 : CT confirms recurred tumor stable in size, but a few more possible smaller mets
May 2023 : MRI confirms recurred tumor still stable, possibly 1-2 more small mets
Feb - May : Signatera negative and CA19-9 declining steadily (under last week!)

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May 2023 consult w/ my Whipple surgeon said HIPEC was a possibility as long as one of the "suspicious lesions on MRI outside the peritoneal area" was not a cancerous, because it would not be reached with the HIPEC chemo wash. HIPEC might be a possibility if that's a tumor that's removed separately via surgery, but it would also be a major surgery (long recovery) that included removal of my remaining pancreas, with 2 months (1 before surgery and 1 after) of no systemic chemo other than the HIPEC. Radiation would damage organs where several of the likely mets exist, and was therefore not a viable option.

My main medical oncologist believes the "biochemical" therapies in clinical trials will provide a better outcome after my current chemo loses control of the disease, and there are some promising options available to me. However, my initial gut feel at first diagnosis was that immediate removal was the way to go, rather than 6 months of neoadjuvant chemo before surgery. Me: "Get rid of all the disease you __can__ see with a technique you __know__ works, and then worry about getting rid of what __might__exist elsewhere with a cocktail that __might__ kill it later."

I wish now that I had pushed for that approach at the beginning, and that's why I still have a strong interest in the HIPEC (with the extensive "cytoreductive / debulking" surgery accompanying the chemo wash.

Anyway, I will revisit that discussion and other trial options soon with the med-onc folks. Multiple institutions and providers have been involved. I'll send you those details in a DM soon.

Thank you to all that are taking the time to post this detail. I have been declared NED for 3.5 months. However, my CA 19-9 is not in normal range (rose from 45 to 152 in two months) while Signatera reads negative.
I am not comfortable waiting to react. I am looking for proactive measures. Enroute now to an appt at John’s Hopkins for a second opinion.
Stage IV 11/2021. Also awaiting results from all scans this week to post. Hopefully they will be more illuminating. My gut says not to wait to treat; get this out of my bloodstream now! More later..
thank you again for all of the detail.

Good luck to you !! I've heard really good things about John Hopkins. Please keep us updated.

Can anyone explain what a HIPEC is? When would they do this? Also has anyone experienced elevated ALT/SGPT and AST/SGOT while undergoing chemo? Is this normal. Brothers levels were normal prior to starting chemo...now they are elevated after 1 treatment. He is having his second treatment of folfirinox today. Thank you for any help.

Hello @amchurch, While we wait for members with experience to respond, I thought this Mayo Clinic Q&A podcast might provide some answers for you.

--- Mayo Clinic Q&A podcast: Hot chemotherapy for late-stage cancers: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-qa-podcast-hot-chemotherapy-for-late-stage-cancers/

FWIW, there was some discussion of HIPEC a few weeks ago here:
https://connect.mayoclinic.org/discussion/hipec-1/