Thoughts on Stage IV...

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Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Thoughts on Stage IV...

Postby Gravelyguy » Tue Sep 24, 2019 10:03 am

Great topic!

As a math teacher, when I googled it and found that stat I was alarmed to be sure. But like many of you have already stated, stage 4 is such a broad group. I did find a research report somewhere that found in their hospital 5 year survival of above 70% for those that survived the first 2 years. Being a coach, I latched onto that as an intermediate goal. If i can make it two I can make it 5. I made two!

Dave
Last edited by Gravelyguy on Tue Sep 24, 2019 11:54 am, edited 1 time in total.
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Thoughts on Stage IV...

Postby AmyG » Tue Sep 24, 2019 11:12 am

Dave,

You coach XC, right? If you coach high school, do any of your freshman girls run a sub 24?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Thoughts on Stage IV...

Postby Gravelyguy » Tue Sep 24, 2019 11:55 am

AmyG wrote:Dave,

You coach XC, right? If you coach high school, do any of your freshman girls run a sub 24?



Hi AMy,

Yes I do. We have several this year that are under 24 but that is a good time for a freshman girl!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Thoughts on Stage IV...

Postby AmyG » Tue Sep 24, 2019 11:59 am

We're at like a 2 or 3A school so it's really hard to compare her times with what's "average" and what's good. Another race this afternoon. Had lots of rain this morning so the course is going to be hella muddy.

Here's to hoping she gets another PR!!

Edit:

She did! Just over 23 minutes. A full minute and change faster than her last race. She placed in the top 10 out of all the senior high girls. 3rd race, 3rd medal! We're so proud of her effort!
Last edited by AmyG on Wed Sep 25, 2019 10:48 am, edited 1 time in total.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Thoughts on Stage IV...

Postby boxhill » Tue Sep 24, 2019 12:48 pm

As you may know, I am all in favor of research, but you really have to be careful about assessing what you read and putting it in perspective.

For example, lots of older articles confidently state that right-side tumors have a worse prognosis. Newer ones can state the reverse. The reasons for this seem fairly clear: right-side tumors tend to be found at a later stage, probably because they are more likely to be sessile and thus harder to find AND they take longer to make themselves known with blockages and the like. But they are also more likely to be MSI-H, so now things look much brighter because of immunotherapy. Frequently articles focused on survival stats will make the assertion without delving into the reasons.

You can also find articles that confidently assert that "Stage IV CRC is incurable." It can at best be managed to prolong life. Now we know that outright cures might not be in the majority, but they definitely exist because of advances in treatment. Certainly there are plenty of patients who are in the care of doctors in the back of beyond who are not up on the latest treatments, and may well not treat aggressively because conventional wisdom says it's pointless. (As Stu's mom experienced.)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

kiwiinoz
Posts: 1170
Joined: Thu Jan 03, 2013 11:44 pm

Re: Thoughts on Stage IV...

Postby kiwiinoz » Tue Sep 24, 2019 6:29 pm

I took the view early on that it was all or nothing. 100% or 0%, or as CR Guys puts in N=1.
You can do things to make yourself feel better about it, but you can't really do anything to change the outcome. You can only change how you deal with that and I tried to live my life with as much fun as I could.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Thoughts on Stage IV...

Postby juliej » Mon Sep 30, 2019 7:45 pm

CRguy wrote:The "stats" thing has always been the elephant in many rooms here :(

BUTT a long time ago ...
I decided that something was important enough to put into my ongoing signature here :
" my life is an ongoing totally randomized UNcontrolled experiment with N=1 ! "

Don't know if that is a philosphy, an attitude, a musing or just blind naivety :shock:
that is just my story and I am sticking to IT !!!!

Cheers and Harmony to ALL on the Journey
stats be damned :twisted:

WORD!!!!!!!

Stats are data. You are a person, an "N of 1", as CRGuy would say.

No one even quoted stats to me. They just said get your affairs in order because you won't last long. But no one's life story is written in stone. When I kept doing better than they expected my surgeon called me "exceptional".

But, he added, the sad thing is that there are many more "exceptional" stage 4 patients out there who are getting written off by oncologists who don't think they are worth trying to save.

A proactive, assertive, never-give-up attitude is what it takes to convince them that you aren't going down easy.

F*ck cancer!
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Thoughts on Stage IV...

Postby CRguy » Mon Sep 30, 2019 11:01 pm

juliej wrote:A proactive, assertive, never-give-up attitude is what it takes to convince them that you aren't going down easy.

F*ck cancer!


DOUBLE WORD !!!!! sista'

Cheers and MEGA Harmony !!!!!
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

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

Re: Thoughts on Stage IV...

Postby dianetavegia » Tue Oct 01, 2019 2:57 pm

I go in 13 days for my CEA and if that's still nice and 'low norm', I'll be discharged from my onc's care and will have been cancer free for 7 1/2 years and just under 11 years since original Stage III dx.
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

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Thoughts on Stage IV...

Postby Mohrfamily » Wed Oct 02, 2019 10:24 am

Stay away from Dr. Google! What Dr. Goigle showed me aside from your original 14% numbers was this forum of that I'm grateful!

This place showed me every body is different and cancer categorized in CRC also varies case by case. I wrote down all my negativity in the beginning to expel the thoughts and resist the urge to look for more online. This place provides me with the safe haven I needed for real time question, answer, solutions. In a pinterest quote I found...

Dear Cancer,
Thank you for showing me the value of life. You can go now.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI


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