Two-Month Postop Update

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StDrogo
Posts: 20
Joined: Thu Jun 08, 2017 7:54 pm

Two-Month Postop Update

Postby StDrogo » Sun Sep 09, 2018 12:13 am

So, wife had surgery on June 29. Other ovary ostensibly had cancer, but nothing else. Having evaluated the CT scans and PET beforehand, that is precisely what I expected; oncologist was certain she had diffuse peritoneal carcinomatosis and insisted that surgery was futile (only was willing to recommend palliative chemo of FOLFIRI and cetuximab; having personally spent hundreds of hours in the last year reading postoperative scans, I politely disagreed—because of the manner of my wife's initial presentation, I was chary enough not to assume that the presence of ascites was a likely indicator of diffuse disease—which he didn't take kindly to, so now he's our former oncologist), and surgeon was pretty adamant that there were metastases in the liver (strangely insisted that he operated on a different part of that liver segment in December—which was a foreign body granuloma—when I suggested that the areas of avid FDG uptake, which didn't correlate with any morphological abnormalities on CT, were most likely suture granulomas [lo and behold, they were suture granulomas]). The hospital now seems to be pretty paranoid that we're going to sue—they even spontaneously called us in to have a two-hour chat in a conference room—but I don't have the energy for that . . . Anyway, cancer hasn't come back, and I'm starting to think it never will. (Having thoroughly reviewed all 29 documented cases of pseudo-Meigs' from colorectal primaries, I'm increasingly convinced that there is a subtype of colorectal cancer that frankly has no realistic metastatic potential except to the ovaries. How else does one account for the roughly 90 percent progression-free survival among a patient subset [i.e., ovarian secondaries] that would ordinarily have a dismal prognosis?) Anyway, nobody is currently recommending chemo, but that's moot since my wife wouldn't consent in any case. She knows full well that, were the cancer to return, she would be a goner (since it would certainly recur in the peritoneum), and what would be the point protracting life by at best a few months? We've already lost nearly everything . . . Come what may, we're planning on leaving this godforsaken country behind us and returning to Italy in the new year, so that's something to look forward to.
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC

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Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: Two-Month Postop Update

Postby Atoq » Sun Sep 09, 2018 3:15 am

Your wife has really gone through a lot in the last year. Congratulation on her NED status and recovery.

I read your story now because I probably missed the first post being myself at the hospital at the end of 2017.

It is especially interesting with the intermittent fasting during chemo and also the fact that you didn’t tell about the fasting to the oncologist.

I have just been to an official meeting about diet and supplements for cancer patient and it was a big «don’t need any» for both chemo and postchemo, not even D vitamin was reccomended unless proven to be low in the blood. Fasting was too dangerous to do on your own, and so on.

I am also researcher, not on human medicine but animal ecology and genetics, I read the papers of Walter Longo and they seemed quite reasonable and worthy to give it a try if I will have to do IV chemo in the future.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

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mobrouser
Posts: 69
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Two-Month Postop Update

Postby mobrouser » Sun Sep 09, 2018 12:12 pm

StDrogo wrote: . . . Come what may, we're planning on leaving this godforsaken country behind us and returning to Italy in the new year, so that's something to look forward to.


All the best for your return home, you have had an 'eventful' journey so far. Out of curiousity which country is the godforsaken one, Australia or Germany?

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

rp1954
Posts: 1363
Joined: Mon Jun 13, 2011 1:13 am

Re: Two-Month Postop Update

Postby rp1954 » Sun Sep 09, 2018 5:02 pm

It's great that she's made such a full recovery. Sorry it was such hard trip on the yellow brick road (Oz?). Thanks for letting us know what's going on and what you're thinking. Your experience is an important lesson for others about getting written off prematurely.

StDrogo wrote: ... She knows full well that, were the cancer to return, she would be a goner (since it would certainly recur in the peritoneum), and what would be the point protracting life by at best a few months?

I disagree with such fatalism if something crops up. For us, that was among the first set of mets to go on DIY immune therapy with the wicked, augmented immune attack by granulocytes, backed up by cutterage and (mild) immunochemo. For historical reference, this DIY neoadjuvant list is missing several items like 1-2 tsp modified citrus pectin per day. It could be customized and improved several ways.

I do think there is a discussion about differentiating granulomas of non cancer origin, or secondary to it, vs true mets attacked by granulocytes, that current surgical and pathology procedures are ill prepared to handle, document and (attempt to) recognize.

I would think over that surveillence program carefully, frequency and which blood panels, along with anti-cancer anti-inflammatories and immune supplements.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

StDrogo
Posts: 20
Joined: Thu Jun 08, 2017 7:54 pm

Re: Two-Month Postop Update

Postby StDrogo » Mon Sep 10, 2018 5:31 am

Australia is the godforsaken country in question, although we feel similarly about Germany. I know I shouldn't be fatalistic; four major surgeries in fifteen months takes its toll. On the upside, my wife was recovered almost completely within nine days of the last one; they were rather surprised that she had been cycling when we went in to the "conference" last month.

In my wife's case, the etiology of the granulomas is fairly explicable—fecal matter from the perforation and retained surgical matter (although it is admittedly unusual for Vicryl not to dissolve and to form granulomas). I suppose it is conceivable that the diffuse foreign bodies and consequent dense neutrophil/macrophage invasion conferred some kind of protective effect (à la Coley's toxins).
Wife Age 33
02/17 dx Ovarian mass, ascites, pleural effusions
03/17 Resection of 16 x 20 cm ovarian mass; CEA = 10, CA125 = 180, CA19-9 = 36
04/17 Emergency surgery, diastatic perforation, purulent peritonitis, extended right hemicolectomy, well-differentiated adenocarcinoma in splenic flexure, 1/16 lymph
11/17 CT = NED, CEA < 1
12/17 CRS (peritoneal nodules of foreign body giant cell reaction, no evidence of malignancy; liver resection—1 cm FBGCR and .5 cm focal nodular hyperplasia), HIPEC


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