Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Nov/2018

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CRguy
Posts: 9645
Joined: Sun Feb 10, 2008 6:00 pm

Re: ⓊⓟⒹⒶⓉⒺ November /2017

Postby CRguy » Mon Nov 27, 2017 11:21 pm

juliej wrote:Maybe we can start a new group -- the "No Follow Up Protocols" (NFUP) group? :wink: :wink:

We're in new territory here, dude. Let's boldly go forth and monitor the shit out of this thing. Roll our own rules and get the docs to smoke 'em! :D

Seriously, though, I love seeing all the "normal" and "within normal limits" in your report! The "mild degenerative changes" to your spine and hips are only to be expected from the karate. Assume last blood tests were fine and dandy?

Let's live like we have many years ahead of us, like our friend Eric would say. Because we just might.

xo,
JJ


YES NFUP it IS .... BUTT it is YOUR idea 'cos y'all recall some of the "heat" I took wayback when I ...
" invented a new stage .... 3.5 "
when I was a liitle less Zen and more Shaka Zulu :shock: :twisted: :mrgreen:

yeah bloods were good and still livin' Eric's motto as best I can ....
BUTT hey .... this IS me after all ... so doing my best approximation of best I can !

lovin' the
Let's boldly go forth and monitor the shit out of this thing. Roll our own rules and get the docs to smoke 'em! :D
Eric would approve my friend !

Cheers and Harmony y'all
thanks for the posivibes

I shall endeavor judiciously to stay off the doctor's shitlist

CR
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

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CRguy
Posts: 9645
Joined: Sun Feb 10, 2008 6:00 pm

Re: Ten years on forum ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby CRguy » Mon Feb 12, 2018 12:17 am

Sometime during this week ..... OR last week, or maybe next week :shock: ?????
Isn't that just about how a CRC patient's schedule works ?
I registered, joined and logged into this very forum in February 2008.

I even posted my first post :!: :mrgreen:

I was less than a week away from temp ileo takedown ... BUTT a veteran of surgery / chemo / radiation ... SO I just wanted to hang out here,
being a CRC veteran, and an old guy ... just wanted to see how folks were doing on forum.

MOLLY and Sergei founded and ran the forum and we had a CRC survivor as Moderator, and a whole buncha' folks who were linked in and sometimes online. The forum was pretty casual, homey, laid back, interesting, topical ... butt .... BUTT FIRST AND FOREMOST

THIS FORUM WAS AND IS ... the BEST SUPPORT forum on the internet.
I was into and out of a lot of them. Many had good vibes and good folks, BUTT none had the level of discussion this one had.

Now you might say : "Yeah sure CRguy you are a Mod so you gotta say good things about the forum " :twisted:

In FACT : I was the enfant terrible pain in the ass jerk we would all wish to avoid ..... UNLESS
you were dealing with a life threatening illness, which we were.

Some how
Some way

I survived both CRC and my early days HERE, and eventually was invited to become a Mod :shock: :shock: :shock: :evil: :oops: :mrgreen:

I still think there was kind of a vibe " nobody could be worse than CR, so if we bring him on board ... he will protect us from everyone else LIKE HIM !!! :mrgreen: "

great thinking, 'cos since then I have spent more hours nuking hackers and spammers and just plain A-HOLES, than I have just being a CRC guy with all the rest of you / us / me.

No matter, 'cos we all have a role to play here and in essence ...
We are ALL just real folks trying to survive the tsunami we have / are / will face .... CRC
We are all just real folks

THAT is what keeps me coming back, day after week, after year, after decade ...

Being here in my capacity as Mod gave ME a new purpose in my Journey and I hope to share that with all folks here, with whom I have the honor and privilege of interacting

past

present

future

We all have our future and CRC, with all our efforts ... WILL NOT have a future.

That is my dream
that is my WORD !

Love Peace and Harmony to ALL
On the Journey
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

Ron50
Posts: 670
Joined: Fri Feb 10, 2006 7:04 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby Ron50 » Mon Feb 12, 2018 3:33 am

Congrats CRguy, ten years is cool. Good date you started on 10th feb 2008 , I started 10th feb 2006 8yrs after my cancer op. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Ten years on forum ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby Robino1 » Mon Feb 12, 2018 8:49 am

CRguy wrote:Sometime during this week ..... OR last week, or maybe next week :shock: ?????
Isn't that just about how a CRC patient's schedule works ?
I registered, joined and logged into this very forum in February 2008.

I even posted my first post :!: :mrgreen:

I was less than a week away from temp ileo takedown ... BUTT a veteran of surgery / chemo / radiation ... SO I just wanted to hang out here,
being a CRC veteran, and an old guy ... just wanted to see how folks were doing on forum.

MOLLY and Sergei founded and ran the forum and we had a CRC survivor as Moderator, and a whole buncha' folks who were linked in and sometimes online. The forum was pretty casual, homey, laid back, interesting, topical ... butt .... BUTT FIRST AND FOREMOST

THIS FORUM WAS AND IS ... the BEST SUPPORT forum on the internet.
I was into and out of a lot of them. Many had good vibes and good folks, BUTT none had the level of discussion this one had.

Now you might say : "Yeah sure CRguy you are a Mod so you gotta say good things about the forum " :twisted:

In FACT : I was the enfant terrible pain in the ass jerk we would all wish to avoid ..... UNLESS
you were dealing with a life threatening illness, which we were.

Some how
Some way

I survived both CRC and my early days HERE, and eventually was invited to become a Mod :shock: :shock: :shock: :evil: :oops: :mrgreen:

I still think there was kind of a vibe " nobody could be worse than CR, so if we bring him on board ... he will protect us from everyone else LIKE HIM !!! :mrgreen: "

great thinking, 'cos since then I have spent more hours nuking hackers and spammers and just plain A-HOLES, than I have just being a CRC guy with all the rest of you / us / me.

No matter, 'cos we all have a role to play here and in essence ...
We are ALL just real folks trying to survive the tsunami we have / are / will face .... CRC
We are all just real folks

THAT is what keeps me coming back, day after week, after year, after decade ...

Being here in my capacity as Mod gave ME a new purpose in my Journey and I hope to share that with all folks here, with whom I have the honor and privilege of interacting

past

present

future

We all have our future and CRC, with all our efforts ... WILL NOT have a future.

That is my dream
that is my WORD !

Love Peace and Harmony to ALL
On the Journey
CRguy



Thank YOU for keeping the idiots away and thank you for not thinking I was an idiot. :oops:

This forum ROCKS as do the people that reside here, past and present.

Can't wait for the day that this forum is no longer needed. 8)
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

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby mypinkheaven » Mon Feb 12, 2018 10:21 am

One of the best things about this forum, besides CR Guy and all the other great members, is the search function. I don't know of any other groups (including FaceBook groups) that have a search function that works as well. There is a wealth of information and experience here.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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CRguy
Posts: 9645
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby CRguy » Mon Feb 12, 2018 11:02 pm

Robino1 wrote:Can't wait for the day that this forum is no longer needed. 8)
= WORD !
BUTT truth be told I actually LIKE getting one up on the A-holes who try to mess with us .... :shock: :twisted:
Yeah Just me I know :mrgreen:

Ron50 wrote:Congrats CRguy, ten years is cool. Good date you started on 10th feb 2008 , I started 10th feb 2006 8yrs after my cancer op. Ron.

Hey bro' .. YOU have always been an inspiration to all of us .. AND I remember your avatar with the big fish !!! back then. Cheers Ron

mypinkheaven wrote:One of the best things about this forum, besides CR Guy and all the other great members, is the search function don't know of any other groups (including FaceBook groups) that have a search function that works as well. There is a wealth of information and experience here.

The collective wisdom HERE over the years since I first joined is = EFFING AWESOME
we have / have had ... researchers / doctors / nurses / advocates / caregivers / newbies / friends / supporters / patients / politicos / media / business gurus ... who make the difference
the list goes on so if I have forgotten anyone it is just because there are SO MANY great folks, I just kind of take it for granted that WE are the best
AND I do agree ... the SEARCH is actually a very good implementation ... BUTT also because we can search all the great folks who contribute !!!!! (WORD !! :mrgreen: )

lovin' the Harmony
Thank you
to you ALL who have made my own Journey way more meaningful, insightful, supportive and pro-active than I ever thought it would be ...
way back in 2007

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

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby Shana » Mon Feb 12, 2018 11:57 pm

Congrats on your 10th anniversary CRguy!

The board knew what they were doing when they invited you to be a moderator ;)

So glad that you have our backs.. and backsides too! :lol:
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

User avatar
CRguy
Posts: 9645
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby CRguy » Tue Feb 13, 2018 12:18 am

dare I retort ...... :shock:
yeah I do this sometimes

Gots yur backs and
cover your ass
CRC is a Master's class
dat's WORD

nobody else knows
wots up with us
keep your compass
TRUE NORTH

friends and family
dats wot we gots
CTalk forum
for ALL IT's WORTH

been here a while
diggin' homies
makes me smile
until I cry

always a Journey
cannot rest
CTalk forum
is da' best

happy, sad
feelin' empty
NEEDIN' glad
.... NEED the glad

full of empty
feelin' sad
connect with friends
who make me glad

I'm here
no fear

make ALL CRC
a vision
in the rear view
mirror



Word and Harmony
CR
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

stu
Posts: 879
Joined: Sat Aug 17, 2013 5:46 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby stu » Tue Feb 13, 2018 5:10 am

Great having you around . You were a great support to me which strengthened me to support my mum . This forum owes you so much and I know all that you do comes from the heart .

Keep up the good work ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Atoq
Posts: 320
Joined: Wed Oct 25, 2017 9:31 am

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby Atoq » Tue Feb 13, 2018 12:49 pm

Congratulations! You are really inspiring us! :D

Best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

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juliej
Posts: 2872
Joined: Thu Aug 05, 2010 12:59 pm

Re: Ten years on forum ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby juliej » Tue Feb 13, 2018 8:48 pm

CRguy wrote:Sometime during this week ..... OR last week, or maybe next week :shock: ?????
Isn't that just about how a CRC patient's schedule works ?
I registered, joined and logged into this very forum in February 2008.

OMG, it's been 10 years!!! :D :D :D

CRguy wrote:Now you might say : "Yeah sure CRguy you are a Mod so you gotta say good things about the forum " :twisted:

In FACT : I was the enfant terrible pain in the ass jerk we would all wish to avoid ..... UNLESS
you were dealing with a life threatening illness, which we were.

Some how
Some way

I survived both CRC and my early days HERE, and eventually was invited to become a Mod :shock: :shock: :shock: :evil: :oops: :mrgreen:

I still think there was kind of a vibe " nobody could be worse than CR, so if we bring him on board ... he will protect us from everyone else LIKE HIM !!! :mrgreen: "

I loved that bad dude! He was (and still is) honest, caring, defensive of people's right to be heard, a peacemaker and a troublemaker in equal measure. There are times you just gotta act up, CRguy! It's in your DNA. (I'm sure there is a mutation for "wicked sense of humor" somewhere in your genetic test results!) Remember when I didn't want Kenny objectifying my Bosch 36 Volt Litheon Hammer Drill and he demanded a photo of me in my bikini. :wink: Ah, those were the good ol' days.

CRguy wrote:We are ALL just real folks trying to survive the tsunami we have / are / will face .... CRC
We are all just real folks

Amen for REAL people. Don't need no goody-good mod. Need a real dude with real emotions who is strong enough to nuke the spammers and a-holes and keep them away from our little spot!

CRguy wrote:THAT is what keeps me coming back, day after week, after year, after decade ...

You are our north star, our warrior with the light saber battling the cyber wars, our zen poet whose heart breaks when he loses any one of us. You are one of a kind. You are my kind of hero. And truth be told, we'd be lost without you.

CRguy wrote:We all have our future and CRC, with all our efforts ... WILL NOT have a future.

That is my dream
that is my WORD !


Well said, my friend. Well said.

xo,
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

Lee
Posts: 5732
Joined: Sun Apr 16, 2006 4:09 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby Lee » Tue Feb 13, 2018 10:08 pm

Congratulations on 10 years. Totally AWESOME!!!

Major milestone,

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 - 10 years and counting!

User avatar
CRguy
Posts: 9645
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby CRguy » Tue Feb 13, 2018 11:19 pm

Thank y'all ... stu, Lee, Atoq
I plan on at least another TEN !!!!!

juliej ....YES I do
I recall the KWT bikini Bosch incident very well :mrgreen: :shock:

truth is I am STILL that bad boy with all my wicked genes intact ..... BUTT

I am more into using that less like a sword now,
and more like a shield

same weapon
different purpose

YOU know what I am talkin' about

Love Peace and Harmony
to ALL on the Journey
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

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LPL
Posts: 411
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby LPL » Wed Feb 14, 2018 6:53 am

mypinkheaven wrote:One of the best things about this forum, besides CR Guy and all the other great members, is the search function. I don't know of any other groups (including FaceBook groups) that have a search function that works as well. There is a wealth of information and experience here.

I agree with mypinkheaven.
Another thing that I think is good here is the signatures, haven’t seen that anywhere else.
Love you CRguy, congratulation on the 10years!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

User avatar
CRguy
Posts: 9645
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Feb/2018

Postby CRguy » Thu Feb 15, 2018 12:47 am

Thank you homie !

Cheers and best wishes to you
CR
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


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