Diet & survival - where are we at?

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Rock_Robster
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Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Diet & survival - where are we at?

Postby Rock_Robster » Sat Nov 13, 2021 1:31 am

Alright peeps, I feel like a bit of a neophyte on this one - but real talk: hit me up about diet. I’m talking survival diet - not prevention, weight gain, etc. I know this has been asked before, but I’d love a précis of the latest hive mind view on this - particularly to some of my specific musings below.

My medical team has all been very balanced but allopathic - “everything in moderation”, no processed meats, minimise red meat, alcohol, etc. But basically if it isn’t RCT/peer-reviewed, they won’t recommend it. To his credit my oncologist is a supporter of intermittent fasting (eg 8:16, and more extended water fasts).

After I finished treatment, with the advice of an integrative doctor I went to plant based + seafood, with the aim of getting as close to fully plant-based/vegan while retaining muscle mass and getting the benefits of oily fish, etc. Also lots of Japanese style things - raw fish, seaweed, soy/tofu, etc. I’ve avoided protein supplements (concerned about amino acid / BCAA intake), and tried to stay with whole foods.

I wont say I’ve been perfect. During chemo I ate like a 6 year old, and before/after surgeries I sacrificed nutrients over gaining weight and muscle. I still believe in a good BMI as a survival factor - I’m currently at 25-26 and wouldn’t want to drop much below that now (as I no doubt will from surgery/treatments). After my ULAR reversal, raw vegetables became rough and tied me to the toilet - as do beans/legumes.

So - what do you consider the most important dietary factors in survival? Micronutrients? Avoiding carcinogenic/pro-metastatic factors? Calorie timing and immune modulation? Weight gain/retention? Some combination of all of the above??

TIA,
Rob
Last edited by Rock_Robster on Sat Nov 13, 2021 11:17 pm, edited 1 time in total.
39M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then 2.0 - 3.1. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation
07/19 ULAR w ileo, 1/27 LN+
08/19 Liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (since Dec-19)
11/21 New liver lesion (celiac node?), 4 v. small (<2mm) indeterminate lung things

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beach sunrise
Posts: 557
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Re: Diet & survival - where are we at?

Postby beach sunrise » Sat Nov 13, 2021 1:18 pm

One important factor I think is short chain fatty acids as in butyrate.
I am concentrating on butyrate production for endothelial cells/lining among other things.
I do not eat after 6-7pm as to let my body go into purge mode and not have to keep digesting, putting more work/stress on the gut at night.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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horizon
Posts: 1642
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Re: Diet & survival - where are we at?

Postby horizon » Sat Nov 13, 2021 5:10 pm

I pretty much got the same generic advice. I already had given up 95% of red meat years before my diagnosis and I've never drank alcohol. I try to eat relatively well with the naughty bits in moderation.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

JJH
Posts: 325
Joined: Mon Apr 24, 2017 7:26 am

Re: Diet & survival - where are we at?

Postby JJH » Sun Nov 14, 2021 2:39 am

Hi Rob,

I think you're right to focus on diet issues if you are going to be scheduled for another liver resection.  If you were to do an Internet search for LIVER SURGERY DIET you would see quite a number of articles outlining important things to consider, both before and after liver surgery.

Since the liver is heavily involved in food and medication metabolism, it is natural to expect that a keen focus on diet will need to take place in order to insure that you get "out of the woods" eventually in good health and with sufficient nutrition to rebuild your liver and reach a stable dietary regimen.

How are your liver enzymes doing? Is your liver panel relatively normal? Do you have anything like benign fatty liver syndrome?

On Tuesday, the liver surgeon might have some thoughts about the general health of your hepato-biliary system and how long it will take for your body to recover fully from the surgery. I think that your diet, both pre- and post-surgery, would be very important to consider, but I don't know the details. Maybe your surgeon could recommend a referral to a good hepato-biliary specialist to help you get you back on track, diet-wise.

Another point:  For the in-hospital recovery phase be sure that the hospital kitchen gives you the right kind of food when it comes time to have solid foods again. It could be disastrous to be given something like a greasy cheese omelette for your first post-surgery solid meal !
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Diet & survival - where are we at?

Postby catstaff » Sun Nov 14, 2021 7:03 am

Hi Rob,

Speaking as a proponent of evidence-based medicine (with a scientific background) the problem is that a lot of what is known about diet is highly controversial and changes frequently. It is very difficult to do high-quality research with diet, largely because it's nearly always retrospective and, for studies of long-term effects, relies on patient reports, which are notoriously unreliable.

It's not clear what role role diet plays in metastasis, as distinct from the initial development of cancer. For instance, red meat seems to be implicated in causing KRAS mutations, but once that's happened it would have no further effect since the damage is done. And as you can now personally testify, altering your diet, while certainly valuable, did not prevent a recurrence.

My personal opinion, for what it's worth since I'm not a cancer researcher, is that you're probably doing about the best you can do from what you describe, so keep it up.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Gravelyguy
Posts: 369
Joined: Thu Jul 05, 2018 6:03 pm

Re: Diet & survival - where are we at?

Postby Gravelyguy » Sun Nov 14, 2021 9:29 am

Hi Rob,

No real help here but wanted to say I am sorry for this latest hurdle you have to go through.

ULAR certainly adds a twist to the equation. I try to eat relatively healthy and balanced but if I do any more than the minimum of vegetables, my colon goes crazy. Protein is what keeps my digestion the most normal. I have gone to more chicken than beef based and am my own source for grass fed, no hormones beef.

I would be interested in knowing more about how you have managed to go vegan. Again, no real help from me but wanted to let you know I am praying for you.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!

Siti
Posts: 236
Joined: Thu Aug 01, 2019 10:58 am

Re: Diet & survival - where are we at?

Postby Siti » Fri Nov 19, 2021 10:07 am

I think we metabolise food differently, so there’s no one size fits all diet.

My husband has been healthy pretty much his whole life — He was vegetarian on most days and would have seafood sometimes. As for meat, he only eats lean fillet steak or beef burger, but that’s once every 2-3 weeks. Unfortunately, he still got cancer anyway!

After his diagnosis, he has stopped alcohol, he used to enjoy wine over the weekends in moderation. Now he would have only 1 glass of wine on special occasions. Oddly, his liver enzymes/ blood reading weren’t good when he ate healthy (salad and fruits) but on the week we have been indulging in seafood and meat, he would have much better blood reading and no diarrhoea. So for him, it’s the opposite, from his fruit and veggies diet, he is now eating a lot more animal protein.

His doctor / nurse have encourage him to maintain a healthy weight (his BMI is currently 24) and not to lose too much weight cause it’s important that he’s strong enough to take another surgery / chemo hit. His medical team believes that everything should be in moderation because in the end, it’s the quality of life that matters. I think they’re absolutely right :)
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

utahgal7
Posts: 63
Joined: Fri Sep 11, 2020 12:04 pm

Re: Diet & survival - where are we at?

Postby utahgal7 » Fri Nov 19, 2021 10:31 am

Rob,

This may be a little off topic...but I thought this article was interesting:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5394516/
02/20 Rectal Cancer dx - 3 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait); 03/21 CT scan; stable lung nodules (2)
07/21 & 10/21 CT scan; stable lung nodules

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Diet & survival - where are we at?

Postby catstaff » Fri Nov 19, 2021 12:01 pm

To me, that paper is an example of why reliable guidance on diet is so muddled. Most of it was consistent with well-known evidence that eating more fruits and vegetables is good. But trying to distinguish effects of different colors seemed problematic to me. Some of it didn't make any biological sense. It was all based on statistics (which must be done carefully) and on respondents' self-reporting. It may well pan out, but it's just one paper so far. It's also not clear that it was published in a particularly high-quality journal (though I've looked at online articles in it myself).
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

utahgal7
Posts: 63
Joined: Fri Sep 11, 2020 12:04 pm

Re: Diet & survival - where are we at?

Postby utahgal7 » Fri Nov 19, 2021 12:32 pm

catstaff,

The article that I mentioned was something that I thought Rob or others might be interested in reading. It wasn't meant to be taken as a stringent diet guide. I was merely sharing information. Instead of harshly critiquing it, maybe practice more kindness in your life and refrain from being rude.

Have a nice day :)
02/20 Rectal Cancer dx - 3 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait); 03/21 CT scan; stable lung nodules (2)
07/21 & 10/21 CT scan; stable lung nodules

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Diet & survival - where are we at?

Postby catstaff » Sun Nov 21, 2021 7:12 am

I didn't intend to be rude, but the conclusion of the article that orange colored fruits and vegetables were somehow bad for males might or might not be good information, and could cause someone to eliminate them without solid evidence. I didn't see much evidence they'd investigated that very thoroughly.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Utwo
Posts: 277
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Diet & survival - where are we at?

Postby Utwo » Tue Nov 30, 2021 11:37 am

When my father had a challenge regaining weight after his stomach surgery and lost his appetite he asked his surgeon about vodka as an appetizer.
Surgeon's answer was "Of cause, whatever you like to make sure you have an adequate weight."
My son's (he as MD) advice also was - whatever you like; at this age after a diagnosis "healthy" diet is not that important.
Personally I adjusted my diet by eliminating such strong laxatives as coffee, tea, nuts and seeds (they were not laxatives prior to my surgery).

If ideology driven diet make you feel good, of cause go for it.
At the same time based on available evidence I suspect that your diet is as beneficial as vodka.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas


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