Long Time Survivor--First visit to this forum

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idaho-luke
Posts: 2
Joined: Sun Nov 12, 2017 3:49 am
Facebook Username: David Reed

Long Time Survivor--First visit to this forum

Postby idaho-luke » Sun Nov 12, 2017 4:29 am

I am in my 14th year of survival following surgery for stage 3 rectal cancer. The surgery removed 12 inches of my colon including half my rectum. Surgery was followed by seven weeks of radiation treatments five days per week, accompanied by continuous infusion chemotherapy also five days per week, 24 hours a day. I had two follow-up 14 day continuous chemo treatments a few months later with a higher dosage of fluorouracil than the earlier chemo. My strength was minimally affected by all of this, and I was able to go to work every day during my treatments. Five years, three colonoscopies, and 11 CT scans after my last chemo treatment I was pronounced cancer free. That was seven years ago. I have been able to lead a normal life with the exception of the problem of frequent bowel movements (6-8 per day, sometimes more) and some diarrhea. I have managed my situation with dietary restrictions and over-the-counter supplements (metamucil capsules, activated charcoal capsules for gas, and dietary enzymes) that I take with every meal. The most comprehensive advice I have found came from an Australian government publication that I found here: https://www.continence.org.au/download. ... urgery.pdf. I have tailored my diet based on information I found in this document, and that has helped me a good deal. I am now 73 years old, but I feel quite strong and lead a very active life. I have played 152 rounds of golf this year and have gone downhill skiing 41 times--but still I have to manage all of my activities around my bowel habits.

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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Long Time Survivor--First visit to this forum

Postby Robino1 » Sun Nov 12, 2017 12:45 pm

Welcome to the forum and thank you for showing many that colon cancer is survivable! :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

mozart13
Posts: 136
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Long Time Survivor--First visit to this forum

Postby mozart13 » Sun Nov 12, 2017 12:50 pm

Thats great Luke, to see that rectal cancer is curable!
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

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CRguy
Posts: 9591
Joined: Sun Feb 10, 2008 6:00 pm

Re: Long Time Survivor--First visit to this forum

Postby CRguy » Sun Nov 12, 2017 1:23 pm

Welcome to the forum and congrats for your good success !

I could not get your link to work but was wondering if either of these links would have the same info you described ?

http://www.bladderbowel.gov.au/assets/d ... rgery.html

https://www.continence.org.au/pages/man ... blems.html

This google search also brings up a lot of info https://encrypted.google.com/search?sou ... -Rj3lbdZ5o

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

idaho-luke
Posts: 2
Joined: Sun Nov 12, 2017 3:49 am
Facebook Username: David Reed

Re: Long Time Survivor--First visit to this forum

Postby idaho-luke » Sun Nov 12, 2017 3:23 pm

Yes, your first link brings up the exact pdf document I was referring to. I found it through google search of the following "australian government practical advice after bowel surgery". The first site that pops up with the google search will download the document.

tater
Posts: 66
Joined: Wed Jul 19, 2017 5:53 pm

Re: Long Time Survivor--First visit to this forum

Postby tater » Sun Nov 12, 2017 11:18 pm

What a great story for me to read today as I sit next to my wife int he hospital as she is recovering from having her rectum removed, iliac nodes on right side removed and hysterectomy. She is a stage four with five tiny stupid liver mets unless pathology tells us different in two days. Fingers crossed.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 LAR, Hysterectomy & External Nodes Removed W/ileostomy
CEA 1.5 12/30/17, 2.1 2/5/18
Clear CT and MRI on 2/5/2018

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susie0915
Posts: 838
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Long Time Survivor--First visit to this forum

Postby susie0915 » Mon Nov 13, 2017 9:11 am

tater wrote:What a great story for me to read today as I sit next to my wife int he hospital as she is recovering from having her rectum removed, iliac nodes on right side removed and hysterectomy. She is a stage four with five tiny stupid liver mets unless pathology tells us different in two days. Fingers crossed.

Good thoughts coming your way for your wife. Hope there is some positive news.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change


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