Modifications to prevent/lessen chance of recurrence

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Lotus
Posts: 53
Joined: Thu Mar 29, 2018 10:03 pm

Re: Modifications to prevent/lessen chance of recurrence

Postby Lotus » Mon Jul 02, 2018 10:48 am

I can’t take aspirin because of the caffeine content. Do you know if baby aspirin contains caffeine? Can you share the baby aspirin brand and dose you take?
female age 74
3/21/18Colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan no metastatic disease
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no lymph node spread.
Stage 1 t2n0
4/16/18 Robotic LAR
2019 colonoscopy normal
5/21 CEA 1.1, up from .8, .9, <0.5 liver enzymes elevated
7/21 CEA 1.2

erins
Posts: 44
Joined: Sun May 27, 2018 12:41 pm

Re: Modifications to prevent/lessen chance of recurrence

Postby erins » Mon Jul 02, 2018 12:43 pm

I’m due for a follow up with my oncologist so will ask for info on diet (I’ve never eaten red meat or dairy, so the advice from my original consult wasnt altogether useful)

I had heard about tree nuts, but not specifically walnuts, so Thanks :D

I’m intrigued by curcumin showing up in multiple peoples lists—I know it’s from turmeric, and is under study for kidney disease prevention, but hadn’t heard about it being used for cancer recurrence prevention.
38 yr old female
Rectal bleeding for 1 month—>
5/4/18 colonoscopy found mass in sigmoid colon
5/21/18 LAR
stage 2a, 0/17 lymph, clean margins
T3N0M0 G1
LVI neg, PNI neg, MSS
9/21/18 CEA 0.8
11/16/18 CEA 0.8 & CT clear
12/7/18 iron infusion
2/1/18 iron improved, CEA stable.

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Modifications to prevent/lessen chance of recurrence

Postby Deb m » Mon Jul 02, 2018 2:28 pm

I use the swanson brand of baby aspirin. I order it on line at Swanson health products.co. It's just one 81 mg baby aspirin daily that's recommended. I highly doubt that there is any caffeine in it, or at least not enough worth even mentioning. I to can't have caffeine because of kidney stones, but I take one a day it it hasn't bothered me. I am very sensitive to caffeine.

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Modifications to prevent/lessen chance of recurrence

Postby LPL » Mon Jul 02, 2018 2:38 pm

JudiB wrote:I too have made many of the changes that others have reported but the only advice from my oncologist was to eat walnuts! He said that, whilst all tree nuts are good, evidence suggests that walnuts are the best! I looked into utt and the evidence convinced me so, as I love walnuts. ... it's win/win!!
I now add at least 5 whole walnuts to my breakfat cereal with 5 prunes and cover it in kefir, which is another addition since my CRC and resulting ongoing bowel issues!
Love and hugs to everyone on the CRC journey.
Xxxxx

Can you please share a link to research showing walnuts is superior (compared to other tree nuts!).
Thank You.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Modifications to prevent/lessen chance of recurrence

Postby MissMolly » Mon Jul 02, 2018 5:59 pm

Lotus wrote:I can’t take aspirin because of the caffeine content. Do you know if baby aspirin contains caffeine? Can you share the baby aspirin brand and dose you take?


Lotus:
Aspirin is a chemical and, by itself, does not contain caffeine.

Aspirin and caffeine are both Salicylates.

Some over-the-counter analgesic products have caffeine as an additive.

Caffeine enhances the pain relieving effects of aspirin. Caffeine also has an effect of facilitating vasodilation (the rationale for caffeine alleviating headaches).

Analgesic products that contain aspirin and caffeine are sold as specific brand name products. Example: Anacin and Excedrine Migraine are each marketed for headache relief. Example: Bayer Extra Strength Muscle and Body is marketed for PMS cramping and low back pain. About 65 mg of caffeine is added to these analgesic products.

An 81mg baby aspirin should be free of caffeine.

Of course, you can read the active ingredient and additive listing on the box to be sure that the baby aspirin product you are purchasing is caffeine free.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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mobrouser
Posts: 174
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Modifications to prevent/lessen chance of recurrence

Postby mobrouser » Mon Jul 02, 2018 10:52 pm

Two comments.
From the online ingredients listing for Bayer's 81mg aspirin there is no caffeine listed in the non medicinal ingredients.
I'm surprised no one has mentioned reduced alcohol consumption since I've been led to believe that there is a correlation between alcohol usage and colon cancer risk?

8) mob
CC Dx 102017 age 58
Lap. right 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 start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Modifications to prevent/lessen chance of recurrence

Postby CRguy » Mon Jul 02, 2018 10:53 pm

MissMolly wrote:Aspirin and caffeine are both Salicylates.

Just a clarification here :
Aspirin (acetylsalicylic acid or ASA) is a salicylate
Caffeine is a methylxanthine and not a salicylate

The confusion arises because sometimes they are used together in pain medications, and some foods which contain caffeine
will also have measurable amounts of salicylates failsafediet

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Lotus
Posts: 53
Joined: Thu Mar 29, 2018 10:03 pm

Re: Modifications to prevent/lessen chance of recurrence

Postby Lotus » Tue Jul 03, 2018 2:14 pm

I have definitely cut back on sugar but can not cut it out completely. Also have cut out alcohol, gluten and most junk food...
but have to have the occasional ice cream or dark chocolate candy.
female age 74
3/21/18Colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan no metastatic disease
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no lymph node spread.
Stage 1 t2n0
4/16/18 Robotic LAR
2019 colonoscopy normal
5/21 CEA 1.1, up from .8, .9, <0.5 liver enzymes elevated
7/21 CEA 1.2

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Modifications to prevent/lessen chance of recurrence

Postby Deb m » Tue Jul 03, 2018 3:02 pm

As far as sugar, alcohol, gluten, as my oncologist said, no evidence that it enhances the cancer risk if consumed with the thought process everything in moderation. But If you diet is just loaded with sugar alcohol etc, than sure your going to have problems but it may not be a direct link, it would probably cause obesity etc, which indirectly can lead to cancer.

deb m

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Modifications to prevent/lessen chance of recurrence

Postby heiders33 » Tue Jul 03, 2018 3:45 pm

I’m definitely more conscientious about drinking alcohol in moderation, but haven’t given it up completely. I also try to avoid added sugars and refined carbs as much as possible. However, that’s balanced with the fact that starchy foods slow my system up really well. I mainly am avoiding highly processed foods and GMO foods where I can.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Modifications to prevent/lessen chance of recurrence

Postby NHMike » Tue Jul 03, 2018 10:12 pm

lovelife789 wrote:Secondly, when I was sick I came to learn some Jewish don't eat shellfish because shellfish generally eat "dirt" from the sea. Then I thought about it and how the ocean is so polluted nowadays, it kinda make sense. I thought about how eczema is an autoimmune disease and my pattern of eczema outbreak being linked with seafood prompted me to pay attention on how to maintain a stronger immune system. So far... 18 months of avoiding seafood, no eczema outbreak at all.


Observant Jews might just be following Leviticus 11:9-12 too:

9 “‘Of all the creatures living in the water of the seas and the streams you may eat any that have fins and scales. 10 But all creatures in the seas or streams that do not have fins and scales—whether among all the swarming things or among all the other living creatures in the water—you are to regard as unclean. 11 And since you are to regard them as unclean, you must not eat their meat; you must regard their carcasses as unclean. 12 Anything living in the water that does not have fins and scales is to be regarded as unclean by you. (NIV)
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

margiej
Posts: 109
Joined: Sat Apr 14, 2018 8:46 am

Re: Modifications to prevent/lessen chance of recurrence

Postby margiej » Wed Jul 04, 2018 11:09 am

The only suggestions by my oncologist:
- Baby aspirin
- Vitamin D
- Vitamin B-12 (for my neuropathy)
The other things that I do in the hopes of not having a recurrence (I had a pretty healthy lifestyle before all this started, but keep trying to make improvements)
- Vitamin K2 to help with Vitamin D absorption
- Turmeric supplements plus turmeric tea
- Organic everything if possible...so much easier to find organics nowadays and getting more affordable all the time. Fruits, veggies, flours, etc. My sense is that all the pesticides and herbicides like RoundUp in our food are a contributing factor to the uptick in CRC.
- Minimal processed foods
- Lots of fruits and vegetables
- Lots of whole grains - no white flour
- Limited desserts and sugars - a little very dark chocolate with some frequency, though.
- No food coloring - except the occasional M&M ;)
- No artificial preservatives
- Read labels obsessively...so much junk in our food.
- Tree nuts almost daily
- Kombucha several days a week
- Probiotics
- Red meat only occasionally. If I go to a barbecue and they are having burgers, I will have one.
- Limited alcohol - glass of wine about once a week. Used to have 1 or 2 glasses 3-4 nights a week
- Yoga almost every day - home practice
- Walk/run with my St. Berdoodle a minimum of two miles every day - sometimes twice a day adding up to 4-5 miles.
- I drink about 3 cups of coffee a day....recent reports are that it may be helpful., but that's just a bonus...I love coffee!
- I quit highlighting/coloring my hair when I was first diagnosed. This is extreme, I realize!
- Natural cleaning products, laundry products, lotions, sunscreens, etc.
- Have just started taking a CBD gummy every day ... hoping to keep my stress/anxiety at bay
- I avoid plastics--prefer glass bottles, stainless steel, etc. I use glass storage containers instead of plastics.
- I'm sure there's some other little things I do, that I can't think of right now.

I try not to be a nutcase, but I am right on the edge!
Love to all.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

hawkowl
Posts: 132
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Modifications to prevent/lessen chance of recurrence

Postby hawkowl » Wed Jul 04, 2018 11:21 am

I had a healthy diet and lifestyle before diagnosis...active, mostly plant based, never overweight...but I have taken a few steps to hopefully improve my chances if long term survival:

Exercise (I try for 18,000 steps a day plus biking)
Curcumin 2g daily with black pepper
Celebrex 400mg every am
Aspirin 650mg at bedtime
Coffee 3-4 cups a day or more
Cannabis (I use this for neuropathy pain and persistent nausea from dysautonomia)
Chaga tea (made from our own chaga, don't do this regularly anymore)
Dukoral oral cholera vaccine (available in Canada and Europe, one study showed a survival advantage, all things being equal)
Diet: I follow a mostly paleo Diet`. I can't do legumes and have a sweet tooth (plus need to gain weight) so I use maple syrup instead of sugar).

I was taking vitamin D but now live in sunny Florida most of the time and spend a lot of time outside so my levels are good

Has anyone else here tried the Dukoral?
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

margiej
Posts: 109
Joined: Sat Apr 14, 2018 8:46 am

Re: Modifications to prevent/lessen chance of recurrence

Postby margiej » Wed Jul 04, 2018 11:27 am

Forgot to add that we also bought a water purifier for our well water.
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Modifications to prevent/lessen chance of recurrence

Postby Capri » Thu Jul 05, 2018 6:01 pm

henry123 wrote:I am
@ mostly vegan though I slack off while on vacations.
@ curcumin,
@ aspirin 150 mg
@ 8000+ steps + yoga
@ try to avoid emotions like jealousy, conflict and stress
@ veggie juice 2 to 3 glasses - carrot, pomegranate, greens, ginger etc
@ apricot kernels etc



Much appreciated Henry, thank you very much.
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.


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