5 yr survival rate

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lori314
Posts: 76
Joined: Sun Oct 20, 2013 10:58 am
Facebook Username: Lori Biddinger

5 yr survival rate

Postby lori314 » Thu Dec 18, 2014 5:57 pm

The published 5 yr survival rate for colon cancer sucks. While I know I might have many more years past that 5 yr mark, I am still keeping that number in my focus as I live out the rest of my life. I don't want to get to that 5 yr mark and realize it was true and regret how I have lived out those years. I'm not infinitely wealthy, so I can't quit my job to travel the world. I'm curious if others are doing anything differently with the direction their lives have taken. I am trying to spend more time with family and friends. You know the friends you say we need to do lunch and then its a year later and you still haven't done lunch. I'm trying to do as many items on my bucket list as my budget will allow me. And if I get past that 5 year mark then everything after that will be the icing on the cake!
7/13 Dx Stage IIIc rectal cancer
8/13 LAR, no ileo
9/13 4 wks of radiation with folfox pump
11/13 12 rounds Folfox, last 2 oxi taken out
6/14 CT Scan-NED
9/14 Colonoscopy-normal
6/15 CT Scan-15+ lung mets, makes me Stage IV
8/15 Irinotecan,Avastin,5FU pump
12/15 chemo break

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: 5 yr survival rate

Postby KWT » Thu Dec 18, 2014 6:34 pm

It sounds like a plan.

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: 5 yr survival rate

Postby justin case » Thu Dec 18, 2014 7:55 pm

lori314 wrote:The published 5 yr survival rate for colon cancer sucks. While I know I might have many more years past that 5 yr mark, I am still keeping that number in my focus as I live out the rest of my life. I don't want to get to that 5 yr mark and realize it was true and regret how I have lived out those years. I'm not infinitely wealthy, so I can't quit my job to travel the world. I'm curious if others are doing anything differently with the direction their lives have taken. I am trying to spend more time with family and friends. You know the friends you say we need to do lunch and then its a year later and you still haven't done lunch. I'm trying to do as many items on my bucket list as my budget will allow me. And if I get past that 5 year mark then everything after that will be the icing on the cake!

And the published survivor rate is how old :roll:
Kenny has a good plan. And the person who said let's do lunch, hasn't taken you to lunch yet :roll: Please YOU as long as you can, (sorry BB) and live life like it is going to be a long one!
Justin
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

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: 5 yr survival rate

Postby rp1954 » Thu Dec 18, 2014 8:32 pm

Most of all the published survival rates pertain to average results and patients, using then typical treatments, frequently with many missed opportunities, standard and not so standard. One of the most important survival elements here is to be able to step off a tired old survival curve, avoid some pitfalls, and onto a different, better one.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: 5 yr survival rate

Postby janderson » Fri Dec 19, 2014 7:49 am

5 year rate is outdated and overrated. I ALWAYS ignore the statistics. I should have been dead and burried years ago according to the statistics. I was diagnosed stage IV over 9 years ago and plan to be here for a long time. My big thing in life is to NOT let cancer limit my life choices. I live life as much as I can the same way I would if I didn't have cancer. The big difference and it is a positive. I have learned to live more in the moment and appreciate what I have a savor the good days.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: 5 yr survival rate

Postby BrownBagger » Fri Dec 19, 2014 10:02 am

I'm going on 6 years as a Stage 4 and I really don't see the end in sight. I've just focused on continuing to live the life I want to live. Normalcy is comforting. Obviously, I'm not oblivious to the reality of my dx and situation, but I guess as long as I can keep on keeping on, I'm happy. And I mean that--I'm a happy guy.

When I first realized that I was Stage 4 and what that meant, I took solace in the fact that I've lived a full life, my kids are grown, and I don't really have any unfinished business--personal or professional. That helped relieve a lot of stress and put my situation into perspective. I really sympathize with those of us unfortunate enough to be facing death with young children and promising careers, etc. In that respect, I consider myself very lucky.

And I must confess, part of me actually believes that I'll live long enough to benefit from improved treatments and procedures. I'd like nothing better than being able to treat this as a chronic, but treatable, condition. So far, that's the way it's worked out for me, and I hope the trend continues.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: 5 yr survival rate

Postby Mastan » Fri Dec 19, 2014 10:36 am

lori314 wrote:The published 5 yr survival rate for colon cancer sucks. While I know I might have many more years past that 5 yr mark, I am still keeping that number in my focus as I live out the rest of my life. I don't want to get to that 5 yr mark and realize it was true and regret how I have lived out those years. I'm not infinitely wealthy, so I can't quit my job to travel the world. I'm curious if others are doing anything differently with the direction their lives have taken. I am trying to spend more time with family and friends. You know the friends you say we need to do lunch and then its a year later and you still haven't done lunch. I'm trying to do as many items on my bucket list as my budget will allow me. And if I get past that 5 year mark then everything after that will be the icing on the cake!


If the disease progresses then it is advisable to get multiple opinions on how to treat. If you dont become proactive in your treatment you might be missing oppotunities that could improve your long term prospects and you may end up on the mortality curve. This forum is invaluable for education about treatments.
Dx 6/2010 rectal CA

hawkowl
Posts: 132
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: 5 yr survival rate

Postby hawkowl » Fri Dec 19, 2014 1:46 pm

i am newly diagnosed (t3/n1/mx so far) and have a hard time thinking more than one day at a time. Want to research to make sure I get the best care possible, but find the information to be terrifying as well. Thought about the whole bucket list thing, but only item on the list now is "keep on breathing"

BUT I am making plans to get together with old friends. Perhaps will end up having more time than just another year or two, but trying to make every day count
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

jjinmd
Posts: 88
Joined: Thu Dec 18, 2014 9:24 am

Re: 5 yr survival rate

Postby jjinmd » Fri Dec 19, 2014 2:35 pm

I'm only 6 months into this, but I have already had my "stats" change significantly at least three times. I like to be realistic in understanding where I am, but find it overwhelming to think too far out. And I'm focused on doing whatever I can to keep myself on the good side of the stats and I will deal with the bad stuff as it comes. I started out thinking I had to have a bucket list and live every day like I was not going to survive long but I found that exhausting. I was hard on myself if I got short fused with the kids, or if I spent an hour watching tv instead of "doing something important." People say to me all the time - gosh, it must really put everything into perspective and make you so appreciative!. You know what? There is always someone who has it worse than you, and there is always someone who has it better. And being annoyed or complaining sometimes is human! Sadly, my cancer diagnosis did not make me Mother Teresa ☺️ This may be extremely selfish, but I needed to give myself permission to live like I'm going to live. Even if it doesn't work out that way.
42 year old Mom of two
7/14 Stage IV rectal cancer; CEA 70
4 rounds FOLFIRI/Avastin; 5 days radiation
11/14 TME, Liver resection, Temp Ileo - cPR
6 rounds FOLFOX
4/15 CT = NED
5/15 Ileo reversal
7/15 CEA = 2.1

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: 5 yr survival rate

Postby elise » Fri Dec 19, 2014 5:18 pm

I'm just filling my days that make me smile. I try to spend less time doing things I don't like. Hired a housecleaner and guys to mow our huge 4 acres of grass. Have a dog walker and guy who plows. And instead I go to the gym, I guilt, I dog train or go on long hikes. I hope to get back to work this Fall. Then I'll focus even more on finding opportunities to fit in JOY!
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: 5 yr survival rate

Postby Ron50 » Sat Dec 20, 2014 6:23 am

I still have to work to make the rent and pay the bills. Sixteen years have made no difference to what I do, I just do it more slowly. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

vancouver eve
Posts: 1507
Joined: Fri Jan 18, 2008 3:04 pm
Location: Vancouver

Re: 5 yr survival rate

Postby vancouver eve » Sat Dec 20, 2014 7:07 am

Everything that has been posted makes sense to me. I do not believe in stats and never have. They are only numbers that are gathered and do not relate to every case that is DX. I am going to be 8 years out in May.

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: 5 yr survival rate

Postby mstults » Sat Dec 20, 2014 3:45 pm

A baseball team could win 162 games then go 0/4. That team that had just done something considered impossible and end up with a mere division title. The moral is past history means nothing when it comes to that last game.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: 5 yr survival rate

Postby Cherie » Mon Dec 22, 2014 4:09 am

When I look around this board I see many stage four people with active cancer who are well over the five year mark. This is a bit on a generalisation but most of these people all seem to be very active people. So get off your butt and exercise and do let yourself get run down.

However, that is easier said than done. After three surgeries and six months of chemo getting out of bed some days is the hardest thing I have to do.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

sjring
Posts: 181
Joined: Mon Jun 30, 2014 3:16 pm
Location: Philadelphia, PA

Re: 5 yr survival rate

Postby sjring » Mon Dec 22, 2014 4:05 pm

The hard part about statistics is, that unless you understand the population behind them, they are, in and of themselves meaningless. When I was first diagnosed, a little over a year ago, I was told by my onc., that the average survival for someone at my stage and liver involvement was 2 years. But when I questioned that number it included data on patients that went back for decades. In reality with the newer treatments, survival rates are going up, so that 2 year number was a meaningless number.

I can say that my philosophy on how I live my life has changed. I'm much less of a workaholic, although I still am the breadwinner for the family (and provider of health insurance). I refuse to create a bucket list, but I do have things I've always wanted to do that I'm now making the time for, making sure I give my kids the experiences I want them to have. I spend more time enjoying the simple beauty of the world around me...the color of the leaves in the fall, a bright blue day in summer and so on (no I will not appreciate all the snow that has to be shoveled in the winter, I have to draw the line somewhere).

In the end, every day is precious, and it's a shame it takes something like this to jolt someone like me into realizing it.
50 YO Husband & father of 2 teenagers.
DX 9/9/13 Stage 4 cc (at age 48)
16 Rounds FOLFOX + Avastin (Oct-13 to May-14)
Maintenance chemo - Avastin & 5-FU infusions (Jun-14 to Jul-15)
Jul-15: Mets to lymph nodes, resuming FOLFOX
Sep-15: MRI showed stability, back to maintenance chemo.


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