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

Please feel free to read, share your thoughts, your stories and connect with others!
justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Thu Jun 22, 2017 5:46 pm

inorganic8 wrote:This is a conspiracy of the carrot industry. BigCarrot wants us to be dependent on their product to turn orange. They don't want you to know the truth. You can turn orange from just a spray tan. I've been on the run from BigCarrot for a long time. I know their thugs will eventually find and silence me. But until they do, I'm going to spread the truth.

BIGCARROT IS A LIE. EAT CELERY... and ice cream.

That's a good one, Ha! 8) 8) 8) 8) 8)
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Thu Jun 22, 2017 5:57 pm

inorganic8 wrote:This is a conspiracy of the carrot industry. BigCarrot wants us to be dependent on their product to turn orange. They don't want you to know the truth. You can turn orange from just a spray tan. I've been on the run from BigCarrot for a long time. I know their thugs will eventually find and silence me. But until they do, I'm going to spread the truth.

BIGCARROT IS A LIE. EAT CELERY... and ice cream.


I agree, too funny :D

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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 » Fri Jun 23, 2017 12:13 am

Apparently we are all doing this for no reason... Vitamin B17 is the answer.. How could I have been so blind and stupid.
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 » Fri Jun 23, 2017 7:32 am

Dr. Gary Null has had a couple callers to his radio program within the past week or two describing how they reversed their Stage IV cancers naturally by strictly following his protocols. The alternative to chemo does not involve simply adding more carrots to one's diet, so the comments here are very misguided. What I personally would do if I was diagnosed with cancer would most likely include, to start for initial detox:

>5 miles of power walking or jogging daily
absolutely no meat or animal products, no sucrose
whole grains, e.g. millet, quinoa, etc.
juices at least 5x/day... comprised of organic greens, beets, etc... (Chris at chrisbeatcancer.com describes an ideal diet in detail)
mega supplements, e.g. IV vit C, etc. (described in more detail at the "what supplements are you taking?" thread)
meditation daily

My friend who goes to Chipsa Hospital in Mexico, who was given a death sentence of a few months to live about a year ago, is doing great, btw.
Last edited by mpbser on Sat Jun 24, 2017 7:01 am, edited 2 times in total.
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

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 » Fri Jun 23, 2017 8:15 am

mpbser wrote:Dr. Gary Null has had a couple callers to his radio program within the past week or two describing how they reversed their Stage IV cancers naturally by strictly following his protocols. The alternative to chemo does not involve simply adding more carrots to one's diet, so the comments here are very misguided. What I personally would do if I was diagnosed with cancer would most likely include, to start for initial detox:

>5 miles of power walking or jogging daily
absolutely no meat or animal products
whole grains, e.g. millet, quinoa, etc.
juices at least 5x/day... comprised of organic greens, beets, etc... (Chris at chrisbeatcancer.com describes an ideal diet in detail)
mega supplements, e.g. IV vit C, etc. (described in more detail at the "what supplements are you taking?" thread
meditation daily

My friend who goes to Chipsa Hospital in Mexico, who was given a death sentence of a few months to live about a year ago, is doing great, btw.


An alternative to chemo? Alot of forum members are undergoing chemo regimes with high hopes of curative intent. Your rubbish seems to follow you from post to post. Perhaps this forum isnt the medium you require perhaps chris beat cancer is a better alternative. As usual more propaganda from the internet machine. Perhaps ET was real. Was on a movie i seen from a friend of a friend. How about you think before you type before you affect other people with your rubbish.
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

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 » Fri Jun 23, 2017 11:16 am

Hey, everyone needs to make their own choice. DH and I have made ours. We don't get to tell other people how to handle their disease and we'd appreciate the same courtesy in return. It's OK to agree to disagree.

Now, let's please get back to humorous hyperbole.

Also, anyone who disagrees with me has clearly fallen for the propaganda of BigCarrot.
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

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 » Fri Jun 23, 2017 11:20 am

"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.
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

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 » Fri Jun 23, 2017 11:24 am

inorganic8,

I am confused by "We don't get to tell other people how to handle their disease and we'd appreciate the same courtesy in return." To whom is this directed? I saw nothing in this thread indicating a dictation of how people how to handle their disease. I did see discourtesy by swirdfish, but that seems to be a common reaction when alternatives are even mentioned.
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

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 » Fri Jun 23, 2017 11:48 am

The people I was ranting about in the very first post. Fortunately, those folks are rare. Most people are kind and genuinely want to help. A few, are just plain obnoxious. Rather than continue to stew about it, I wrote out some of my in-head responses.

Now, admit it, BigCarrot is funny. Surely we can all agree on that.
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

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 » Fri Jun 23, 2017 12:38 pm

BigCarrot is hilarious, I submit :)
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
Posts: 95
Joined: Sat Nov 08, 2014 1:58 pm
Location: Northern Italy and UK

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

Postby ronnieciao » Fri Jun 23, 2017 1:16 pm

I stopped being polite about stupid suggestions very early on. It was incredible how my mother's diagnosis suddenly made every Tom, Dick and Harry we knew a cancer specialist. No matter how many oncologists, surgeons, and specialists we consulted in our Italy, the UK, Europe, and worldwide, everybody knew better than them. Two idiotic suggestions that really stuck with me were ozone treatment and the bicarbonate of soda treatments. I literally, and with no half measure, had to ban some people from contacting my mother- she was exhausted and scared and would have believed anything and anyone who offered a bit of hope. I still cannot bare to see those people to this day. Not to mention the 'my friend's cousin went to XXXX clinic in XXX/ did this XXX diet and was miraculously cured' hogwash which I see mentioned here as well. You are not going to be jogging anywhere when you are exhausted from treatments and your only concern is to keep your weight up. Those types of comments pop up every so often in this forum. Usually I do not comment, but one thing that this disease did to me in 2 and a half years as a full time caregiver was strip me of all diplomacy (admittedly I did not have much to begin with) . You will probably get there as well, inorganic... if you have a short fuse like me anyway :)
Last edited by ronnieciao on Fri Jun 23, 2017 4:17 pm, edited 2 times in total.
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

User avatar
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 » Fri Jun 23, 2017 2:13 pm

inorganic8 wrote:Now, let's please get back to humorous hyperbole . . .

Yes, please. How about it's the media / one big conspiracy . . .
. . . not surprised at all that it isn't getting more attention in the media. Mammoth-sized, well-established pharmaceutical companies that produce toxic chemo are major advertisers, political campaign donors, etc..

:oops: Leon
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!

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 » Fri Jun 23, 2017 3:01 pm

We all know that BigCarrot owns the media.

Ok, gang, please let's not bring crossover from other threads here. This space belongs to all of us, so you can in fact, write whatever you please. I just want to act silly right now.

mpbser, if you and I compared notes, I expect we would disagree on a lot of things. Butt, we are in this trench together, sister. I've read some of your threads and I see you agonizing over your husbands treatment. DH and I agonized over his treatment as well. We chose a very aggressive conventional western medicine treatment. It was the right choice for us and we're seeing good results. I sincerely hope that whatever treatment you and your husband choose, you also get great results.

At the end of the day, this is a very science oriented, peered reviewed journal kind of place. It's the right place for me.
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

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Fri Jun 23, 2017 3:53 pm

inorganic8 wrote:We all know that BigCarrot owns the media.
We chose a very aggressive conventional western medicine treatment. It was the right choice for us and we're seeing good results.


I too got a very aggressive conventional western medicine treatment and I am very much alive today. I told my Onc I would do WHATEVER she asked of me to the best of my ability (I also told my surgeon the same thing), butt get me thru this. My Onc threw the kitchen sink at me. Results are I'm very much alive today, in fact a few year back, I was told I was "cured". Words I thought I would never hear (13 yrs now).

The best advice I could give anyone starting this journey and who choosing western medicine, have faith/trust in your team of doctors. If you don't, find someone else. Not all Dr.(s) graduated at the top of their class. Some are truly better than others. But find a team that is right for you. And FOLLOW their medical advice to the best of your ability.

Another piece of advice, find an exercise that works for you and stick with it. Me, I power walk 3-5 times a week for an hour each day. Not only does it help emotional, butt exercise has been shown to reduce recurrences by up to 50%.

Lastly, be VERY CAREFUL of supplements that you might want to take while on chemo. I was not allowed to take anything including multivitamins. I was told many of the over the counter supplements can be counter productive to what chemo is trying to do. I had to check with my Onc with anything I was considering. It seems to have worked for me. Today I lead a normal life with a few battle scars. For those starting the journey, check with your Dr first before taking any over the counter supplements, especially while on chemo.

Much success to those on or starting on the journey.

Lee

Yes to the media being a big fat carrot 8) .
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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 » Fri Jun 23, 2017 5:14 pm

If I had a dollar for every time I heard someone tell me that coffee enemas cure cancer, I could treat myself to a fine pair of shoes. GRRRRR :roll: :shock: :roll:

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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 124 guests