Just wondering if there is any interest in putting together a basic package of Welcome information that might he useful to a newcomer to this site.
If so, what should be included in such a package? Any thoughts?
Welcome Wagon?
Re: Welcome Wagon?
Respectfully my friend .....
I believe what we DO ... do here 24/7 is pretty much a welcome wagon intro into the world of CRC ...
IF you have specific recommendations and specific information which you would like to research and develop for this forum,
please do so. We are always receptive to making this forum VERY user friendly !!!
Cheers
CRguy
I believe what we DO ... do here 24/7 is pretty much a welcome wagon intro into the world of CRC ...
IF you have specific recommendations and specific information which you would like to research and develop for this forum,
please do so. We are always receptive to making this forum VERY user friendly !!!
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
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
-
Lovenothate
- Posts: 38
- Joined: Tue Aug 16, 2016 3:13 am
- Facebook Username: Emily.guzman
Re: Welcome Wagon?
I actually really think that's a good idea. I noticed many people will pop in and ask questions about what they SHOULD do. I think it's important to have some key information about what colon cancer is NOW.
For example, I had to sift through posts to understand that MD Anderson and Memorial Sloan were up to date in advanced techniques. Perhaps we should have some kind of key info such as small things we don't realize we already know(others might be able to input as well) that aren't easily "google searchable" to people who are newly diagnosed. It can help ease their minds knowing there are new treatments and procedures available and not just outdated statistics on the internet.
Maybe even include a checklist or give an idea of the process of the beginning of the journey of what is unfortunately colon cancer(ports,chemo,surgery,second opinions,etc).
Em
For example, I had to sift through posts to understand that MD Anderson and Memorial Sloan were up to date in advanced techniques. Perhaps we should have some kind of key info such as small things we don't realize we already know(others might be able to input as well) that aren't easily "google searchable" to people who are newly diagnosed. It can help ease their minds knowing there are new treatments and procedures available and not just outdated statistics on the internet.
Maybe even include a checklist or give an idea of the process of the beginning of the journey of what is unfortunately colon cancer(ports,chemo,surgery,second opinions,etc).
Em
daughter to DM dx Stage IV CRC @47 July 2016
total hysterectomy b/c ovarian mets abscites 6/16
Colostomy
Folfox 7/16
Lung spots 2mm each 9/16
Xeloda & Avastin 1/17
Shrinkage to lungs spots! 4/17
Break from Avastin/ Xeloda continued 7/17
Omentum mets/ lungs mets stable(possibly not malignant)
Folfiri 8/17
1 lung spot all along-clear abdomen scans chemo break until 4/4/17
total hysterectomy b/c ovarian mets abscites 6/16
Colostomy
Folfox 7/16
Lung spots 2mm each 9/16
Xeloda & Avastin 1/17
Shrinkage to lungs spots! 4/17
Break from Avastin/ Xeloda continued 7/17
Omentum mets/ lungs mets stable(possibly not malignant)
Folfiri 8/17
1 lung spot all along-clear abdomen scans chemo break until 4/4/17
Re: Welcome Wagon?
The amount that people have to learn and absorb in a short period of time felt overwhelming to me and this combined with emotional distress can be quite rough. I think that FAQs are great but I preferred reading the accounts of others and talking with people here and there. After a little reassurance on the process and potential outcomes, it's a little easier to go through FAQs, papers and articles. So I think that some combination would work.
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
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
Re: Welcome Wagon?
I believe that sticky topics on the top of this forum and home page http://colonclub.com articles play this role.
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
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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