Question- how do you count years of survival?

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Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Re: Question- how do you count years of survival?

Postby Koreysue » Sat Oct 19, 2019 9:57 pm

kandj wrote:I have always looked at Overall Survival rates being from day diagnosed. So for DH he has passed the 4yr OS mark. For NED I count the day no scans or tests show cancer. So for his current bout, it would be NED since Nov. 2018. He has been NED before twice, with the clock restarting with each new met seen. But he has been battling this bitch for a little over 4 years. :)


Thank you for your reply. I worded my question badly. Wishing us all strength in this fight
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2

Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Re: Question- how do you count years of survival?

Postby Koreysue » Sat Oct 19, 2019 9:58 pm

radnyc wrote:From day of surgery which rendered you cancer free


Thank you for your reply. That’s the way I’m counting it but doc has set me back. I just get hung up on numbers. A weird coping mechanism I guess
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2

User avatar
CRguy
Posts: 10020
Joined: Sun Feb 10, 2008 6:00 pm

Re: Question- how do you count years of survival?

Postby CRguy » Mon Oct 21, 2019 12:24 am

Koreysue wrote:Thanks for your reply CRguy.
I agree with everything stated above, I guess I didn’t word it right, because I know we are all survivors from day 1! I just get hung up on numbers.. fixated... (diagnosed with ocd)
Ksue

NOTHING wrong with your post / question homie :mrgreen:
see how many interpretations we are discussing !!!!!

I believe it is really important for us as patients to be able to evaluate / enunciate / state
WHAT survivorship means to ... US !!!!
WORD !!!

It is also very important to the medicos and stats folks to be able to "define" survivorship as a data point

I get it ... BUTT ... I am just more interested in patients and homies HERE surviving

I leave it to the medicos and stats folks to be more succinct in their interpretations and definitions

ME ?????
I am here
I am surviving

Gloria Gaynor - I Will Survive


Cheers to ALL on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Koreysue
Posts: 130
Joined: Mon Apr 30, 2018 2:36 pm

Re: Question- how do you count years of survival?

Postby Koreysue » Mon Oct 21, 2019 10:37 am

CRguy wrote:
Koreysue wrote:Thanks for your reply CRguy.
I agree with everything stated above, I guess I didn’t word it right, because I know we are all survivors from day 1! I just get hung up on numbers.. fixated... (diagnosed with ocd)
Ksue

NOTHING wrong with your post / question homie :mrgreen:
see how many interpretations we are discussing !!!!!

I believe it is really important for us as patients to be able to evaluate / enunciate / state
WHAT survivorship means to ... US !!!!
WORD !!!

It is also very important to the medicos and stats folks to be able to "define" survivorship as a data point

I get it ... BUTT ... I am just more interested in patients and homies HERE surviving

I leave it to the medicos and stats folks to be more succinct in their interpretations and definitions

ME ?????
I am here
I am surviving

Gloria Gaynor - I Will Survive


Cheers to ALL on the Journey
CRguy


Thanks CRguy
I am a little scared BUTT surviving too!
(Haha see what I did there?)

Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2

User avatar
CRguy
Posts: 10020
Joined: Sun Feb 10, 2008 6:00 pm

Re: Question- how do you count years of survival?

Postby CRguy » Mon Oct 21, 2019 12:43 pm

:shock:
:mrgreen:

Cheers !
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

MetastaticEquilibria
Posts: 59
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Question- how do you count years of survival?

Postby MetastaticEquilibria » Mon Oct 28, 2019 3:32 am

It has been almost 3 years since diagnosis, but I don’t consider myself a survivor, since, barring a miracle, I most likely will not survive this whole thing.

I consider myself still in the trenches and running out of bullets. Which admittedly makes for a much less marketable t-shirt than one that proclaims “Survivor!” :wink:
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 last 2: 130 74
CA19-9 2.8-232 last 2: 232 96
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Claudine
Posts: 173
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Question- how do you count years of survival?

Postby Claudine » Mon Oct 28, 2019 11:45 am

I consider myself still in the trenches and running out of bullets. Which admittedly makes for a much less marketable t-shirt than one that proclaims “Survivor!” :wink:


https://www.districtlines.com/18717-A-S ... e-Trenches

It looks like your CEA levels are down though, to 130? How is the Lonsurf + Avastin treatment going?
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

MetastaticEquilibria
Posts: 59
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Question- how do you count years of survival?

Postby MetastaticEquilibria » Tue Oct 29, 2019 1:17 am

Claudine wrote:
I consider myself still in the trenches and running out of bullets. Which admittedly makes for a much less marketable t-shirt than one that proclaims “Survivor!” :wink:


https://www.districtlines.com/18717-A-S ... e-Trenches

It looks like your CEA levels are down though, to 130? How is the Lonsurf + Avastin treatment going?


Haha, thanks for the pointer to that t-shirt. “Smile from the trenches.” Sounds like a good motto.

CEA is back up, actually. It’s peak was just before proton therapy last year, then it went back down to normal range for a while before starting the climb up again. The trend is not my friend.

I should update my story in my thread at some point. Keep waiting for things to stabilize first, but “things” don’t seem inclined to cooperate.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 last 2: 130 74
CA19-9 2.8-232 last 2: 232 96
RAS wild MSS MET+ TP53-
UGT1A1*28 homo


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