Things Not to Say and the Responses I want to Make (Rant)

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peanut_8
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Re: Things Not to Say and the Responses I want to Make (Rant)

Postby peanut_8 » Sat Jun 24, 2017 9:48 pm

Indeed CRGuy, alkalized water is a controversial topic here on Colon Talk. :shock: :shock: :shock:

viewtopic.php?f=1&t=50333
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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CRguy
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Re: Things Not to Say and the Responses I want to Make (Rant)

Postby CRguy » Sat Jun 24, 2017 11:43 pm

DAMN .... that was a good topic wasn't it !!!! :mrgreen:

AND .... complete with all the usual suspects
some of whom now are dearly missed :( ... BUTT their legacy LIVES

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

inorganic8
Posts: 50
Joined: Mon Feb 27, 2017 6:13 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby inorganic8 » Sun Jun 25, 2017 8:37 am

peanut_8 wrote:Indeed CRGuy, alkalized water is a controversial topic here on Colon Talk. :shock: :shock: :shock:

viewtopic.php?f=1&t=50333


And now we know that BigCarrot is just another facet of the Alkalized Water Industrial Complex. WE ARE THROUGH THE LOOKING GLASS PEOPLE!
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly
June 12, 2019 At Peace

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Maggie Nell
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Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Maggie Nell » Sun Jun 25, 2017 9:00 am

Here be gerbils!
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX

Ordained Dudeist Priest, the Church of the Latter-Day Dude 8)

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Bev G
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Location: Quechee, VT

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Bev G » Sun Jun 25, 2017 4:42 pm

mpbser wrote:"An alternative to chemo? Alot of forum members are undergoing chemo regimes with high hopes of curative intent."

I don't see how the existence of an alternative to chemo threatens or somehow denigrates the hopes of a cure via chemo-only.

That being said, I can understand the underlying and basic tenor of this thread. People fighting cancer, especially those with grave prognoses, including my husband, receive such a range of comments from people who have not been in their shoes. To those who have put a lot of stock in conventional medicine and are, for whatever reason, prejudiced against alternatives, comments such as "you need to eat more broccoli" most certainly can come off as flip and insensitive. If only it was that easy! My point was to say that people who have gone and are going through the natural route have to make incredibly difficult lifestyle changes and have to have tremendous will power and commitment. The regimen consumes your entire life because it takes so much time and effort on a daily basis to gather and prepare your food and to exercise, meditate, etc. Having been there myself, albeit with cardiovascular disease, I know this firsthand. When I "detoxed" with a hardcore diet and exercise program, I spent a good seven or so hours each day preparing and cooking each meal, cleaning up, exercising, and meditating.


Who has cancer? You or your husband? Although I am a "cured" stage IV, I was cured via conventional surgeries and chemo. People can obviously pursue whatever sort of treatment they want, butt I remain personally very offended by non-cancer people who seem to have fully swallowed the kool-aid and feel free to pass on dietary/alternative/carrot advice from those of us who are battling to survive.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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Bev G
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Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Bev G » Sun Jun 25, 2017 4:51 pm

mpbser wrote:We drink water that I collect from a spring on top of a mountain at a national forest that we live in the foothills of. I wonder what its pH is. Also, whenever I can, I buy alkalized water. I have recently been making sure that my husband drinks it also, now that he has been DXed.


Are you kidding?? If you're walking up a mountain to collect spring water, walking 500 miles a day or whatever you're doing, eating only a "clean diet", spending 7 hours a day maintaining your personally prescribed protocol, I'm wondering how on Earth you could have wound up with heart diease. That just doesn't make much sense, And, the pH of your spring water? 7, of course.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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CRguy
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Re: Things Not to Say and the Responses I want to Make (Rant)

Postby CRguy » Sun Jun 25, 2017 10:54 pm

BEV ... homie !!!!

there is fact and fiction
fact and faith
belief and bullshit
science and skeptic
efficacy and expectation
truth and “trust”
stupid and cupid

there IS my dear friend
wait for it .... SHIT and SHINOLA :shock: :mrgreen:

The real challenge we have as sentient beings is …..
knowing HOW to parse the rhetoric and resolve these kind of
“complementary alternatives” dichotomies

My ... JIMO status is : we can’t

Yin is Yin and Yang is Yang, metaphorically speaking
BUTT when folks jump into only ONE
they are missing the essential mandate of Daoist enlightenment :
there is NEVER YIN OR YANG
there is ALWAYS Yin AND Yang

… check out my avatar

ALWAYS Yin and Yang interacting … read the I Ching

the non believers will NEVER be convinced that actual REAL science will win the day
…so do your Peruvian goat milk enemas with Laetrile chasers in the latest holistic cleanse and I’ll see you on the other side

believers will do the best and latest of current science based KNOWLEDGE ….
And I will continue to see you here … on THIS side

I just don’t have the patience anymore to detox the Kool-Aiders Bev

They gots to cleanse their own selves !!! :mrgreen:

Harmony to All
BUTT my energies are directed to HERE and NOW,
in the real world, which is why I am still in it !

Fully INTEGRATIVE MEDICINE with feet in BOTH camps
.... NOT either OR

just saying’

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

mpbser
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Re: Things Not to Say and the Responses I want to Make (Rant)

Postby mpbser » Mon Jun 26, 2017 6:32 am

BevG,

Who said anything about walking up the mountain? Your hostile comments don't exactly comport with the terms of use of this site and with its purpose:

The Colon Club Message Board was designed for those who have been diagnosed with colorectal cancer, their friends, family and caregivers to come together for support, respect, understanding, kindness, hope, and strength.

Regarding who has cancer: First, what does that matter? Second, my husband has cancer, yes, but he is not following an entirely conventional treatment. He is using supplements and diet.

Nasty bullies my husband called the lot of you. I am getting to see for myself what he meant.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

ronnieciao
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Location: Northern Italy and UK

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby ronnieciao » Mon Jun 26, 2017 7:45 am

mpbser wrote:BevG,

Who said anything about walking up the mountain? Your hostile comments don't exactly comport with the terms of use of this site and with its purpose:

The Colon Club Message Board was designed for those who have been diagnosed with colorectal cancer, their friends, family and caregivers to come together for support, respect, understanding, kindness, hope, and strength.

Regarding who has cancer: First, what does that matter? Second, my husband has cancer, yes, but he is not following an entirely conventional treatment. He is using supplements and diet.

Nasty bullies my husband called the lot of you. I am getting to see for myself what he meant.


This board probably isn't for you. And no one has berated you for following "supplements and diet" - that is not what you have been saying. It's the holier than thou attitude you have had since the beginning. Big pharma conspirations? Maybe you should bring that up with the scientists/patients we have on the board, we have one here who has stage 4 cancer and still does everything possible to help the community listing all the clinical trials around the world, and explaining the SCIENCE around it in simple terms. And he is not the only one. How do you think you were going to be received over here when YOU come here practically telling everybody that what everybody here is doing is wrong, we are all suckers and you know best beacause you are eating broccoli and drinking alzalized water? Because this is what transpires in everyone of your posts. Some of us have been here for years, people like Bev G best part of a decade i think, and they have heard it all. I am (was) also a caregiver and I have always found everyone here eager to help and kind. Sorry to say the problem is your attitude. Veronica
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver, peri, ovaries, bones
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Immunotherapy: Tecenriq (Atezolizumab) single agent trial: failed
Left us Feb 2017

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby LeonW » Mon Jun 26, 2017 8:05 am

mpbser wrote:Nasty bullies my husband called the lot of you. I am getting to see for myself what he meant.

Thanks for clarifying. Sorry that not much has changed since April 30.

Anyhow best wishes, over and out
L

Maybe a Thing not to Say, but the Response I want to Make (Rant) :roll:
Let's bring the humor back in again . . .
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby Swirdfish » Mon Jun 26, 2017 8:22 am

mpbser wrote:BevG,

Who said anything about walking up the mountain? Your hostile comments don't exactly comport with the terms of use of this site and with its purpose:

The Colon Club Message Board was designed for those who have been diagnosed with colorectal cancer, their friends, family and caregivers to come together for support, respect, understanding, kindness, hope, and strength.

Regarding who has cancer: First, what does that matter? Second, my husband has cancer, yes, but he is not following an entirely conventional treatment. He is using supplements and diet.

Nasty bullies my husband called the lot of you. I am getting to see for myself what he meant.


Lets all get back on topic. This thread was for fun and we should treat it as such.

Just be careful of your statements as you have alot to contribute as do we all. Love all, serve all.

Where is organic8 and bigcarrot :lol: :lol:
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby mpbser » Mon Jun 26, 2017 9:10 am

Wow. Just wow. I'm the one with a "holier than thou attitude"? Are you kidding me? This entire thread has had an exceedingly hostile "attitude" towards alternatives and those who may be open to them. The mere mention of them by me got jumped upon by people telling me to get lost. Look at the evidence and see who has the attitude towards whom.

Look in the mirror.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby peanut_8 » Mon Jun 26, 2017 10:36 am

Took a while, butt finally a rare gif has surfaced of BIGCARROT.

Image
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

bitchslapped
Posts: 1534
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby bitchslapped » Mon Jun 26, 2017 2:04 pm

WELL...I see you all have been having fun during my short sabbatical :shock: :roll: :mrgreen: (9 yr old grandson w/me for last 3 wks)

This topic has come up before re: the things people say that tend to offend cancer patients. My DH never did express anything to me that he found offensive. How about some things that you may have found useful or comforting/appropriate that people have said...any takers?

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

stu
Posts: 1444
Joined: Sat Aug 17, 2013 5:46 pm

Re: Things Not to Say and the Responses I want to Make (Rant)

Postby stu » Mon Jun 26, 2017 3:43 pm

Hope you had a great time with your grandson BS . Nine year olds are great.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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