5 yr survival rate

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missjv
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Location: FLORIDA

Re: 5 yr survival rate

Postby missjv » Wed Dec 24, 2014 11:12 am

I am at 8 1/2 years from stage 4 diagnosis and doing great. i have learned to stay off of dr google. according to the stats I should not be here but here I am so i just ignore all that stuff.


missjv

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

Re: 5 yr survival rate

Postby KWT » Wed Dec 24, 2014 11:13 am

missjv wrote:I am at 8 1/2 years from stage 4 diagnosis and doing great. i have learned to stay off of dr google. according to the stats I should not be here but here I am so i just ignore all that stuff.


missjv

Awesome!

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

Re: 5 yr survival rate

Postby mstults » Wed Dec 24, 2014 1:51 pm

That is awesome. I have a cousin that's coming up on 10 yrs with stage 4 breast cancer. I guess at 2 1/2 yrs I'm about to expire according to stats. Oncologist still says he has a few tricks left.
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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cptmac
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Joined: Mon Nov 19, 2007 3:15 pm
Facebook Username: Dorothy McGrath

Re: 5 yr survival rate

Postby cptmac » Thu Dec 25, 2014 10:55 pm

When I was dx'd, I was thrilled to hear the stats!!! I had never known a Stage IV to live more than 2 years.... after hearing, from several docs, that I had six months to live, but that I could die at any minute, I knew if I found the right doc's... I had a shot!!! Woo Hoo!!! And here I am, 10 years later.... one of the ten 5% and now I think it's up to 8%. Woo Hoo.

And when they ask how people do on the clinical trial I was on, the doc's just say, the people haven't lived that long to give you any good stats... But I'm one of the however many that are holding that stat up!!! Woo Hoo!!!

All I wanted, during my treatment, was for my life to go back to normal.... I promised the dear lord that I would give up all of my daring activities and I would never complain or worry needlessly about not having enough when I retire... And, the only thing I ever wanted was to buy a house. To be fair, I had already gone skydiving, traveled, etc, etc.... But I just wanted my life to settle. So here I am.... in a house I helped design... It is not a mansion... living with my cat and my Mom moved in in with me... Living the dream. The normal, American dream.... Not wanting to move my cat, who is blocking some of my keys on my keyboard... and has my monitor askew so it's hard to see... but it makes it more creative for me to find different words to use..

Here's wishing everyone's life goes back to being normal.
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: 5 yr survival rate

Postby dianetavegia » Sun Dec 28, 2014 5:56 pm

Six years ago, I was dx'd Stage IIIB Jan. 09 and was all clear until Feb. 2012. Had a tiny liver met removed and am coming up on 3 years NED from that. Stats are an average. They include people who were already in poor health, 75 year old men and 20 year olds with rare forms of colon/ rectal cancer. Stats are useless. You're either 100% or 0%. Choose 100% and enjoy yourself!
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: 5 yr survival rate

Postby Steph20021 » Sun Dec 28, 2014 8:20 pm

I enjoy reading these positive stories so much. It gives me hope. So badly I want things to return to normal.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Bat-Mom
Posts: 101
Joined: Sun Feb 09, 2014 8:01 pm
Location: FL was RI

Re: 5 yr survival rate

Postby Bat-Mom » Sun Dec 28, 2014 10:12 pm

It took me a few weeks after surgery before I got staged. Right up to the last minute I was hoping for a stage 1 or 2. I remember the surgeon saying lymph nodes. It was the oncologist that said 3b. There was a whirlwind of activity and appointments for ports and scans and chemo. I never googled the stats. Until a couple months ago. I was looking around hoping to find that magic thread on how to fix neuropathy. Once I started reading the stats I couldn't stop. It isn't something you can un-read.

I spoke to my oncologist and she said as I expected that you can't really apply the stat to one individual. But what troubles me is not so much the 5 year survival but the recurrence curve. My understanding is that recurrence is most likely to happen 18-24 months after end of chemo. I am now 6 months after end of chemo. So if I have recurrence it is likely to happen a year or so from now. Well I work at a pretty stressful job and frankly by the time I get home from work I am so tired and cranky and spent that I just want food and then bed. If I have a recurrence and then find that I spent all my relatively good-health time working I am going to be so upset. My husband took such great care of me during chemo. My kids were awesome. Now I want to build up good times and good memories. Not stressful tired memories.

I want to take care of my family, cook, exercise, enjoy life more. Being 'successful' has changed so much for me. I am glad I read those stats. Those stats were the kick in the pants I needed to make some life changes. We will miss the money but I think the money comes at too high a price. I will be giving up the fat cat job in a few weeks and will be taking an early early early retirement.
54 y/o
10-2013 colonoscopy
11-2013 colon resect
12-2013 stage 3b results are in 4 of 11 LN
12-2013 - 5-2014 folfox
9-2014 cea 1.7 12-2014 CT clear cea 1.7 3-2015 cea 1.6
6-2015 new doc new lab. Cea now 3.9???

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: 5 yr survival rate

Postby Regan » Sun Dec 28, 2014 10:30 pm

Bat-mom....I SO applaud your work decision.
When my hubby got diagnosed, I was so very fortunate that my employer knew how close we were and since my position required extensive travel...they "let me go"
After he became NED I now get to work from home on this companies website....they were so awesome....(I was good to them as well).
I work in the middle of the night when SCANXIETY refuses to let me close my eyes to sleep... And we golf we he can or weather permits. Major lifestyle change and I feel so fortunate I can be with him all the time
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

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

Re: 5 yr survival rate

Postby Lee » Sun Dec 28, 2014 10:42 pm

lori314 wrote:TYou know the friends you say we need to do lunch and then its a year later and you still haven't done lunch.


Per my signature line, I'm a 10 yr survivor of stage IIIC rectal cancer. Yes my life is different today and YES I've dropped a few friends from my radar. The one you stated above and the one who were totally CLUELESS about what I was going through. I needed people who could help me, NOT drag me down because of there own personal ignorance or problems. Cancer changes the way we see life (at least for me) and at the end of the day, I wanted positive people in my life, not negative people.

Survival rates on google are out dated. YMMV

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!

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: 5 yr survival rate

Postby JDinNC » Sun Dec 28, 2014 11:59 pm

When I was diagnosed....I had my time of crying but soon realized it is what it is. The strange thing was with years of insomnia, those days between DX and my surgery, I slept like a baby. Everything happened do fast I had no time to worry besides none of my doctors told me anything about my Cancer. They just explained what they where going to do during my surgeries. My oncologist told me nothing about my cancer, he only discussed chemo and that he would see where I was in two years. So here I am almost a year and a half out. And I'm still as clueless as day one.

I've decide to continue my life as I did before Cancer. I don't know what will happen to me but it's so stupid to just shut down because you feel somewhere down the road you're going to die. I'm not going to do a bucket list since it's like saying I'm getting ready to check out soon. Though I am going to do what I've always enjoyed..and that's renovating old houses. Deep down I feel I can beat this..I guess because my doctors never told me any negative information regarding my Cancer I don't know what to worry about. So with much disapproval from my husband, I bought an old cabin. This summer I started tearing it apart and you know It felt good. I have something besides cancer to think about. This is a frugal project so I'm hitting thrift stores, yard sales, repurpose and throw always. Everything I love to do..and that's what it's all about. I have no ideal if I'll ever get it done..butt...I look at it this way...if I think I need to finish it maybe my cancer will still dormant. And hopefully I can make it to 5 years.

All the other stage 4 'ers, that have surpass the five years mark is my inspiration. ☺️
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

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Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: 5 yr survival rate

Postby Frenchie's Wife » Mon Dec 29, 2014 12:32 am

I saw the 5% survival rate as a challenge. My odds were very bleak indeed, I was already stage 4 at diagnoses.
The main reason was the multiple mets in my liver already. They draw the line at a certain number and I was past that point.
I had two choices: do nothing and die in about 6 months or give them permission to perform a radical procedure in use less than a year that carried a high risk of complications. I am a risk taker by nature so we went for it. They had to go back in again 6 weeks later to fix something but over all it was a success.
I passed the 5 year mark this September. Over all, the journey has not been all that bad with a few hiccups along the way.
Since I have an aggressive cancer and have been off chemo for almost a year the real challenge will be making it to year 6.
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: 5 yr survival rate

Postby Rob in PA » Mon Dec 29, 2014 1:01 am

1. A life spent worrying is a life half lived
2. Nothing wrong with bucket lists as long as you have a hole in the bottom of it...that way it never gets FULL! :D
3. I got the "get your affairs in order " speech four years ago a d I'm still here
gu


C
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

hoodornament
Posts: 5
Joined: Mon Dec 15, 2014 1:17 am

Re: 5 yr survival rate

Postby hoodornament » Tue Dec 30, 2014 3:03 am

Diagnosed with Stage-4 cc w/met to liver in Sept 2014.
Went to American Cancer Society website (and others).
Read & learned all I could.
The HISTORICAL 5-yr survival rate for what I have is 6%.

As a CPA who had several (not just the required one) statistics related courses in college, let me remark some about this...

First this rates are in fact HISTORICAL, meaning they are past observances and NOT predictions.

Second, they include people who have died of ALL causes - not just died from cancer. This includes, old age, heart attacks, murder, auto accidents, and every other cause of death you can think of. Thus, if it had been possible for those dying of other causes to have been eliminated from the statistical sample a priori, the published rates would have been higher. <shrug>

Third, the historical, published rates are AVERAGE(S) without the standard deviation(s) published next to them. (The standard deviation gives the reader of the average some indication of the range of the distribution - Is it wide & flat, or narrow and sharply peaked?) Thus we don't really know anything about the distribution. In fact there is some anecdotal evidence that the nature of the distribution is bi-modal, meaning for instance that we observe in this group that some people live a relatively long time after diagnosis and treatment, and others die off rather quickly. And likely as not most people don't die at the time of the historically published rate. I know of one case where a woman diagnosed with colon cancer lived an additional 18 years, and died, not of cancer, but of a heart attack. <go figure>

Fourth, there is also anecdotal evidence that ATTITUDE (and several other "intangibles") play a part in survival, and that those with good attitudes, good "karma," etc., tend to live longer. (Now while I'm not a big personal subscriber to this view, it does have a lot of anecdotal evidence in its favor.)

I hope this puts the "5-yr survival rate" thing into perspective - they are somewhat helpful, but in no way gospel nor predictive. My oncologist won't even give predictions. Although (humorously to me - I have a strange sense of humor) my surgeon was much less sanguine when he put in my chemo port. He said, "If you are lucky enough to need that removed, come and see me," meaning if I live... :D
==================
The Path of the Just
Is as a Shining Light
Which Shines Brighter and Brighter
Until the Full Light of Day.
- Proverbs 4:17


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