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Thread: Peritoneal Carcinomatosis after Whipple-Questions

  1. #1
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    Peritoneal Carcinomatosis after Whipple-Questions

    First post here, because we have so many questions...

    Dad diagnosed with un-resectable LAPC in Sept 2016. Underwent 12 cycles of FOLFIRINOX and one of SBRT, CA 19-9 started at 452 and trended down afterwards, prior to Whipple with a vascular reconstruction here at Stanford Hospital in April 2017 (where we relocated specifically for the surgeon). Complications following surgery included sepsis and intra-abdominal hemorrhage due to "friability" of arteries after radiation, preventing him from returning to home to DC (long plane rides seemed scary), but things were looking up until last week.

    Dad was just admitted back to hospital with sub-acute bowel obstruction of unclear origin, which hasn't resolved. CA 19-9 is elevated (~8000), although liver is clean on CT and cytology of ascites drained during paracentesis came back negative, our surgeon here fears peritoneal carcinomatosis or some other metastasis of recurrent pancreatic cancer is blocking the stomach from emptying. Endoscopy, upper GI series, and PET scan planned for Tuesday to investigate what's going on. We never started chemo after surgery because he was always on the tenterhooks of heading back to the hospital, and had planned to do it back home =[.

    Does anyone have experience with peritoneal carcinomatosis (or other carcinomatosis) from pancreas origin? Assuming he's too fragile abdominally for CRS/HIPEC, so options are chemo probably, but we're afraid they'll say he's too fragile for intervention for the bowel obstruction even, or some such thing. He was doing great up until a week ago, but is incredibly stubborn and insisted he was fine even when he couldn't keep any food down. We had been planning to go back home soon. Any alternative treatments I haven't turned up? Assuming we'd want to start chemo immediately, but with the 3-day weekend and his stomach still blocked...it hasn't happened. Are there questions we should be asking the docs that we aren't? If they're talking palliative care, we want to at least try something before that happens, but are uncertain even where to start here.

    Should we try to relocate to somewhere like JHU or MD Anderson or MSK? Will clinical trials for metastasized pancreatic cancer accept him with carcinomatosis, if indeed that's what it is, and does anyone have recs? How do you even do the hospital-to-hospital transfer, anyways?

    It seems like every day counts at this point, and he's not one to give up, so I'm trying to pull out all the stops. He'll want to be back home on the East Coast anyways if things look grim, that's where his other daughter and his brothers are...we're trapped on the wrong side of the country now.

    Any advice or thoughts?!?

  2. #2
    Moderator Top User BobInBonita's Avatar
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    Quote Originally Posted by utooley View Post
    First post here, because we have so many questions...

    Dad diagnosed with un-resectable LAPC in Sept 2016. Underwent 12 cycles of FOLFIRINOX and one of SBRT, CA 19-9 started at 452 and trended down afterwards, prior to Whipple with a vascular reconstruction here at Stanford Hospital in April 2017 (where we relocated specifically for the surgeon). Complications following surgery included sepsis and intra-abdominal hemorrhage due to "friability" of arteries after radiation, preventing him from returning to home to DC (long plane rides seemed scary), but things were looking up until last week.

    Dad was just admitted back to hospital with sub-acute bowel obstruction of unclear origin, which hasn't resolved. CA 19-9 is elevated (~8000), although liver is clean on CT and cytology of ascites drained during paracentesis came back negative, our surgeon here fears peritoneal carcinomatosis or some other metastasis of recurrent pancreatic cancer is blocking the stomach from emptying. Endoscopy, upper GI series, and PET scan planned for Tuesday to investigate what's going on. We never started chemo after surgery because he was always on the tenterhooks of heading back to the hospital, and had planned to do it back home =[.

    Does anyone have experience with peritoneal carcinomatosis (or other carcinomatosis) from pancreas origin? Assuming he's too fragile abdominally for CRS/HIPEC, so options are chemo probably, but we're afraid they'll say he's too fragile for intervention for the bowel obstruction even, or some such thing. He was doing great up until a week ago, but is incredibly stubborn and insisted he was fine even when he couldn't keep any food down. We had been planning to go back home soon. Any alternative treatments I haven't turned up? Assuming we'd want to start chemo immediately, but with the 3-day weekend and his stomach still blocked...it hasn't happened. Are there questions we should be asking the docs that we aren't? If they're talking palliative care, we want to at least try something before that happens, but are uncertain even where to start here.

    Should we try to relocate to somewhere like JHU or MD Anderson or MSK? Will clinical trials for metastasized pancreatic cancer accept him with carcinomatosis, if indeed that's what it is, and does anyone have recs? How do you even do the hospital-to-hospital transfer, anyways?

    It seems like every day counts at this point, and he's not one to give up, so I'm trying to pull out all the stops. He'll want to be back home on the East Coast anyways if things look grim, that's where his other daughter and his brothers are...we're trapped on the wrong side of the country now.

    Any advice or thoughts?!?

    utooley.

    I'm really sorry you have had to find us. Hopefully either a current member or a "lurker" will have some direct and good advice for you. (We love our lurkers because many have been here quite a while, gathering experience, before they start posting.) You've been dealing with PC since Whipple in Sept '16.

    Don't get too hung up on dates since they can be a major distraction. Right now you need to focus on major the major issue of getting him to someplace where you have complete trust in the care team. I would recommend someone like the NCI's "Cancer Center Finder". If you search for a team specialized in HIS type of cancer and his geographical region, it will guide you to Centers that have specific interest in his type of cancer. You can look specifically for center with clicical trials going on now. Here is there web-page address: https://www.cancer.gov/research/nci-role/cancer-centers/find



    This page is for the PAnCan Clinical rial Finder. You can also search eir site for a way to contact someone to help you with your specific search:
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  3. #3
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    Thanks, BobinBonita....I appreciate the guidance and the support. We're trying to figure out what to do now...not sure how you move a currently-hospitalized patient (for the bowel obstruction) to another hospital, but we'll investigate.

  4. #4
    Moderator Top User ddessert's Avatar
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    I was wondering if adhesions after surgery might also cause an obstruction? Adhesions will not show on scans and could pull the intestines into kinks that block food passage, I'd guess. Adhesions wouldn't show on the endoscopy, either. Most surgeries (>80%) result in some type of adhesions, but most are small in nature and not a problem.

    Is he using Creon? Before I used Creon to help break down the fats, starches, and carbs, food would just sit in my GI tract and not move.

    For weeks after surgery, the new connections in the GI tract are swollen as they heal and will block larger amounts of food. However, he's far enough out now that it shouldn't be a problem.

    I don't know if the doctor has already presented the case to the hospital's board of experts. MD Anderson had a 'tumor board' that meets weekly to discuss difficult cases and generate new ideas. I'd ask if they have such a board and if they came up with any ideas.

    Couldn't they test the drained ascites for tumor cells? I've never asked the question before, but there are circulating tumor cell (CTC) tests for blood, so why not ascites?

    There are quite a few who've had metastases to the peritoneum (if that's what the surgeon means by peritoneal carcinomatosis). Let's hope that's not what it is for now, but there are clinical trials for this. As you've seen, HIPEC is one that is very hard on the body and really not proven to help.

    Hopefully the procedure tomorrow will give some answers, as it's all guessing right now.

    It seems like nutrition is item #1.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  5. #5
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    ddessert,

    They think that's unlikely that it's adhesions, given that his tumor marker is elevated at the moment. Just had the "this is terminal it's time for palliative care" conversation with his surgeon (who's the primary attending on him since April) this morning. He said they could go in and get a definitive biopsy, but that increases risk and he's not sure it confers any benefit, since what they'd like to do is unblock his bowel so he can eat and at least get out of the hospital for a little before the end. Dad's in no condition to travel at the moment, so that would mean here on the West Coast, we're trying to figure out what to take from that conversation.

    The ascites came back negative for cancer, but the nodules in the peritoneum on the CT seem to have grown since last week, so that's his diagnosis. He thinks that after pneumonia and all that my dad's been through, he's too weak for any kind of chemo. He said he could get a medical oncologist to come in and talk to us about it, and "maybe someone would be willing to dribble some gemcitabine into your veins," but the benefit in terms of life extension is probably "a couple of days at most" and he thinks families that come to terms with this end up happier. That's why they haven't involved oncologists at this point.

    Trying to get a second opinion from Johns Hopkins, sending records and scans now, and talking to MD Anderson about whether they can do one--they say now that they don't do remote second opinions, that he'd have to come in and be seen, so that's another can of worms if the bowel obstruction is resolved. Any thoughts or experiences from people who've been through this? I've seen posters on the boards who've gone to MD Anderson and gotten this treated to some extent, but Dad's body has been through a lot. Anything we can do to fight the cancer in the hospital (doc nixed IV vit C, since he's on TPN at the moment)? It hurts to sit here and feel helpless.

  6. #6
    Moderator Top User ddessert's Avatar
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    It sounds like you're all in agreement that the first step is to unblock the bowel, then?

    If the bowel is unblocked and he gets significantly better, it might change some minds.

    One problem may be that these doctors have may have put their opinion of his chances (their conclusions) down in your father's official medical records. These are the records that other doctors may review before seeing him. It can be really hard to overcome all that. I can think of a few New York oncologists that would not necessarily give up, though. Like Dr. Allyson Ocean of Let's Win PC. From what I can tell, she's a patient's doctor until the end. I would even try reaching out to her through Let's Win and I think it's probable you'd get some answer.

    In your case (based on the extensive interactions we've had here ), I might downgrade the visit to MD Anderson on your list. The vibe I get from some of our members (I was treated there, too) is that they're not too interested in what they consider "terminal" cases. If that's the case, you'd likely get the same response as the current surgeon and have wasted time and energy. So if you only have one silver bullet, don't waste it there.

    Out closer to the West Coast is the T-Gen clinic in Arizona. They run lots of clinical trials there and have been known to think out of the box. I'm not sure if they take patients like your father (considered terminal) and trying to get him healthy enough to be in a clinical trial. They're a great treatment clinic, but I'm not sure that's what you dad needs yet.

    So, my 'specialty' is trying to give options to patients. To try and get them in contact with whoever might be able to help them most. However, my co-moderator BobInBonita has reminded me that this is not always the best thing for the patient. Right now, your dad must be beaten down. If you haven't yet, ask him if he's ready and willing to continue. He needs to know that you'll support whatever he decides. If he's done, the planning changes to what is the best way to go out with as much pride and dignity as possible. Don't wait until it's too late. Sometimes the end comes crashing down on people.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

 

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