O/T The 4 Kinds Of Health Chatroom Users (Article)

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bitchslapped
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O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby bitchslapped » Tue Nov 21, 2017 11:02 pm

Really? OK...Why Not! We're being studied folks. Trying to put us in a slot. Obviously this is just one take on the character of health chatroom visitors and users, and another study might see things differently. OK, so WHO on here participated in this survey, as I don't see a category for the clinically insane. Maybe I'm in a category all my own, but somehow I don't think so. :roll: :shock: :mrgreen: :lol:

Excerpts:

“We expected to find that women in these online rooms would discuss surgical options, including risks and benefits,” said Marmor, an informatics fellow and surgery resident at UC San Diego School of Medicine. “Surprisingly, we found that 95 percent of posters had already undergone surgery. Few who were posting in chat rooms had not already had an operation.”

“We identified four broad categories of visitors to online health communities from an online survey of more than 180 online health community users,” said Huh. “These users included ‘caretakers, opportunists, scientists and adventurers’.”

https://health.ucsd.edu/news/features/P ... s.aspx#top


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
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

KElizabeth
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Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby KElizabeth » Wed Nov 22, 2017 12:03 am

I'm not a participant of the survey but I think our group is unlike any other. I have tried to join a group for Meniers disease and TNA, but both were non funtional.

Also, I despise surveys. I am the jerk who chooses the middle answer for every question just to be difficult. I am always annoyed they don't have a check box for "thinks this is a stupid question" by evey line.
Female age 38- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 -current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA: 16.4 March 2017
CEA: 90.1 October 2017

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CRguy
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Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby CRguy » Wed Nov 22, 2017 2:02 am

Ok OK me me .....!

I AM an adventurer :shock:
my life was NOT interesting enough ... SO I got CRC !!!!
Then wait for it ...... still not enough fun SO >>> I GOT A LUNG MET !!!!!!

there : now some BUTT head metadata harvester can get another grant for more ignorant "studies" !!!!
WHOOPEESHIT !!!

hey .... maybe spend your time and energy as a "researcher" on the actual disease
at one time I actually had respect for UCSD ... WORD :twisted:

JMO
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

NHMike
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Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby NHMike » Wed Nov 22, 2017 7:41 am

KElizabeth wrote:I'm not a participant of the survey but I think our group is unlike any other. I have tried to join a group for Meniers disease and TNA, but both were non funtional.

Also, I despise surveys. I am the jerk who chooses the middle answer for every question just to be difficult. I am always annoyed they don't have a check box for "thinks this is a stupid question" by evey line.


I agree with this. We have a potentially fatal disease that can kill fairly quickly and have to go long and difficult treatments to A) get rid of it, B) live with it, C) the other outcome. A lot of the stuff here is scary and there's a lot of motivation to get information and resources fast. That's a lot different from someone suffering from tennis elbow.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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Robino1
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Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby Robino1 » Wed Nov 22, 2017 9:21 am

I hate surveys. All they do is collect info and twist the data to support whatever agenda they are trying to promote.

Notice I said Twist the data.

It is not in anyway scientific research. It will do absolutely nothing as far as advancing toward a cure.


Haven't read the article and don't plan on it. My blood pressure is high enough
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

lpas
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Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby lpas » Wed Nov 22, 2017 11:19 am

Interesting--thanks for posting. I didn't participate in any surveys but it sounds like they've definitely got me pegged as the Adventurer I am :).
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX, Celebrex & many supplements
3/16 Ovarian mass removed. Benign fibroid
9/16 clean colonoscopy
3/17 clean CT
Ongoing Celebrex, cimetidine & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3
Mom to a 3 & 6yo

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bitchslapped
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Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby bitchslapped » Sat Nov 25, 2017 11:36 pm

I didn't see anything negative in the article; just surprised we are a phenomena worthy of a study! Agree UCSD would have more important subject matter to study in my mind. I've been on a few forums since Bff dx of appendix cancer & her DH w/prostate cancer.
As far as forums, we've got it made in the shade, i.e. layout, ease of use, search functions, bookmark tools, signature, you name it. Plus diversity of subject matter, personalities, humor, & of course the occasional flareups which all add to the "flavor".

We got spunk :P

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
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

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CRguy
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Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby CRguy » Sun Nov 26, 2017 12:54 am

bitchslapped wrote: Plus diversity of subject matter, personalities, humor, & of course the occasional flareups which all add to the "flavor".
BS

WHO us ????? :shock: :evil: :mrgreen: :mrgreen: :mrgreen:

I just figgered since I am always on a Journey
I MUST be an adventurer :?

Cheers homie
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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bitchslapped
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Location: PNW/USA

Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby bitchslapped » Sun Nov 26, 2017 1:15 am

You're all 3 CR w/heavy on the adventurer. What you are NOT is an opportunist. :wink:
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
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

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O Stoma Mia
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Re: O/T The 4 Kinds Of Health Chatroom Users (Article)

Postby O Stoma Mia » Wed Dec 06, 2017 2:52 pm

If you're interested in why people post here, there's an old thread on that topic:

What makes you participate here?
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=34183
.
.
Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages


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