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!!