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

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept/2017

Postby CRguy » Fri Sep 29, 2017 11:05 pm

peanut_8 wrote:you can avoid them altogether, just google up 'happy dancing squirrel gif'

I may do that for the one-offs ... BUTT ...
I also hosted hundreds of images for other folks here, so I need the time to move all the originals and link to imgur or such :(

peanut_8 wrote:CRguy personified. :mrgreen: :mrgreen:
at least in IMO

:shock:

:mrgreen: :mrgreen: :mrgreen:
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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peanut_8
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Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept/2017

Postby peanut_8 » Sat Sep 30, 2017 12:09 am

super cool. :mrgreen: :mrgreen: :mrgreen:
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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peanut_8
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Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept/2017

Postby peanut_8 » Sat Sep 30, 2017 12:14 am

peanut_8 wrote:super cool. :mrgreen: :mrgreen: :mrgreen:


quiet sophistication and enhanced intellectual capacity.
that is a dancing squirrel in a nut shell

and don't get me started on photo bucket... I forgot about all my game camera pics of mountain lions and bears. grrrr. :twisted:
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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CRguy
Posts: 9567
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept/2017

Postby CRguy » Sat Sep 30, 2017 12:22 am

:oops: awww shucks
me does me best :oops: :oops: :oops:
thanx sista' nut

me and fbook has NUTTIN' on how I feel about phoneybucket
and y'all KNOW how I feel about in yo' face book

cheers
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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peanut_8
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Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept/2017

Postby peanut_8 » Sat Sep 30, 2017 12:35 am

last, butt not least, the respectability of highly trained martial arts.

Image

jk
you're the best CRguy
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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bitchslapped
Posts: 1429
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept/2017

Postby bitchslapped » Sat Sep 30, 2017 1:24 am

What the squirrel is going on around here anyways?? Bunch of mutts...I mean nuts on this website! :P

Good to hear you got sprung from the big house. Actually it's Grrrreat (like Tony the Tiger)!

Any plan is better than no plan, but wondering why the CEA if not a good marker for you, & secondly, can you encourage, insist, convince to establish a protocol for followup CT w/your primary care doc, say on a semi-annual, annual, biennial basis?

After all, someone in your position is very special...correct? :wink:
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept/2017

Postby CRguy » Sat Sep 30, 2017 10:51 am

squirrely stuff is GOOD for you
Rocky the flying squirrel and all ... now who wants to be Bullwinkle :?: :shock:

CTs : actually not too concerned until we get some other indication for it, then I can get a direct referral back to the big house
OR there are private CT / PET / MRI clinics for pay as you go imaging, as a last resort.

Cheers to the peanut gallery
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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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept/2017

Postby Maia » Sat Sep 30, 2017 6:13 pm

CRguy wrote:chest and abdominal xrays ( multiple views ) and abdominal / liver ultrasound, all this fall
continued general blood tests including CEA ( not a marker for me ) CA19-9, LDH, liver enzymes
probably on a 6 month basis with HgbA1c every three months ( I'm on a statin which keeps me borderline in the high FBS zone )
...and whatever she thinks needs checking OR I ask her for... !


Neat plan.
So happy for you, old friend. So happy :)

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CRguy
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ⓊⓟⒹⒶⓉⒺ November /2017

Postby CRguy » Wed Nov 22, 2017 4:15 pm

Ok as promised in another topic, here are some details of my homegrown :
Follow Up For Those with no Follow Up Protocols

abdominal U/sound : liver, pancreas, gallbladder, biliary tree, vessels, spleen, kidneys all normal

chest Xrays (not CT) : cardiopericardium, mediastinum, lungs, pleural spaces all clear and within normal limits

abdomen / pelvis Xrays (not CT) : within normal limits and expectations

mild degenerative changes in thoracic spine and hips ( = Thank you to all my karate training partners ! :mrgreen: )

This imaging was done now, being 16 months after last CAP CT scan. We are planning another set next year, with a tentative date for next CAP CT in 2 years, making it a full CT every 3 years since leaving the BCAA. The Xrays U/sound will continue to be yearly unless otherwise indicated and as mentioned a CT, MRI or PET can be added at anytime if needed.

CEA, CA 19-9, PSA are being done every 6 months
My regular blood tests are also every 6 months for FBS, HgbA1c, liver enzymes etc.

SO my friends ... that seems to be it for now

Moving forward one step at a time in CR land
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

mozart13
Posts: 133
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ NOV/2017

Postby mozart13 » Wed Nov 22, 2017 4:35 pm

That’s great! :D
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

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LPL
Posts: 410
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ NOV/2017

Postby LPL » Wed Nov 22, 2017 6:42 pm

So happy to read your good news CRguy :D
Thank You for your work here & for being you!
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

Nextgen
Posts: 26
Joined: Sun Aug 07, 2016 12:38 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ NOV/2017

Postby Nextgen » Fri Nov 24, 2017 7:22 am

CRguy wrote:OK so I know I have been here for a few years...
AND I have spewed and waxed poetic ...
AND I have a few relevant topics in which I have some experience....
BUTT I am after all just another ColoRectal Guy. Right ?

I've written, rewritten and pruned my signature info probably 20 times since I first registered.
Everything I thought was important I included when I thought it was important to do so, and a lotta times I just honoured fellow members...past and present.

I recently had a request to share some more info about "my Journey" from a newer member.
Knowing all my homies here and all the stories we are all following, I didn't think my own info was really all that earth shattering.

BUTT upon reflection ... we all have something to share and it would not be in keeping with the very spirit of this forum for me not to do so as well.

HERE, only because a new friend ‪jalusa‬ asked ...... is the exec summary CR Journey :

August 2006 - lower GIT / "backdoor" issues, doc appt, tests all OK, age 55
February 2007 - definite fecal blood, scheduled colonoscopy, blood tests
May 2007 - colonoscopy / biopsy confirms rectosigmoid adenocarcinoma, CT, MRI, many blood tests follow
June 2007 - 6 weeks neo-adjuvant chemoradiation with Xeloda ( 3600 mg/day ), blood tests, CTs
August 2007 - TME via LAR of primary tumour, originally Stage IIIC, temp ileostomy, pCR ( pathological complete response to chemo-rad )
September 2007 - pelvic abscess, more blood tests, cultures, mega antibiotics, IVR drain placed
October - abscess resolved, started adjuvant chemo with Xeloda ( 4000 - 5000 mg/day ) declined FOLFOX at that time
February 2008 - JOINED THE COLON TALK FORUM !!!!!!! ... oh yeah, and had ileostomy takedown

Until October 2009 - many bloods, ultrasounds, Xrays, many CTs, many recheck appts
... WHEN an eagle eyed Radiologist spotted a "WTF is that" in upper left lung on a survey xray .... NOT a CT !
Back into diagnostic mode : PET scan, repeat CT scan, MRI, referral to thoracic specialist, more blood tests etc.etc.etc.

April 2010 - VATS wedge resection of a "clean margin" confirmed mCRC tumour, diagnosis of a benign bronchogenic cyst, power port implanted
( removed 3 years later )

June - November 2010 - FOLFOX 12 cycles, many bloods, scans, appts. etc.

November 2010 - May 2015 : follow up monitoring with CT, MRI, chest xray, exams, blood panels, CEA / CA19-9
May 2015 - suspicious "new" area of question in liver. Info updated later in this topic but appears to be a fat mass fatty infiltration.
May 2015 - June 2016 : ultrasounds and CT, bloods
Oct 2016 : bloods and routine follow up colonoscopy

( typically my "blood panels" include GGT, AlkP, ALT, AST, Bili, LDH, CBC with differential and 6 month to yearly total cholesterols, LDL, HDL,TG, FBS, HA1c, PSA, CK, CRP, BUN, creatinine and eGFR. )

As of November 2017 Update, my tally of the number of times I've had these things done appears to be :

CT = 18 ( chest/abdomen/pelvis )
PET = 1
MRI = 2
colonoscopies = 5
sigmoidoscopies = 2
chest/abdominal xrays = 6
abdominal ultrasounds = 5
full blood panels = 33
CEA = 28 ( not a marker for me, never over 1.4 )
CA 19-9 = 8
CRC related surgeries = 5
FOLFOX = 12 cycles
Xeloda = 10 cycles

I'll try to keep the above list up to date !

... and NOW finally I don't have to write all this stuff down again....
I am just going to refer everyone HERE ... so thanks to my buddy for making me get it all together in one place now !
If you think there is something I can help with or need to clarify, please post here or PM me.
I have now included a link in my signature which leads to this post.

( Found another mini-review in this topic from 2013
and there is always the Calling ALL Colorectal CANUCKS ! topic for a little more light reading :shock: )

Cheers and Harmony to all
CRguy still on the Journey


Wonderful journey ! Inspiring and encouraging ! U Keep our hope going! I believed many have benefit from positiveness that you have spread! God bless you always !
My mum 55yr on first diagnosis
Dx cc T3N2bM0 on Dec2011 CEA5.0, extended right hemicolectomy Dec2011, 12x Folfox CEA1.9,
Liver mets on Feb2014 CEA6.4, liver resection on May2014, 8x xeloda+cetuximab CEA2.8,
CT scan shows eccentric bowel wall thickening of rectosigmoid region Jul2016 CEA1.8
Colonoscopy on Aug2016 NED
CT on Mar2018 NED
CEA 1.4 Nov2016
CEA 1.5 Mar2017
CEA 2.1 Jun2017
CEA 1.1 Aug2017
CEA 2.7 Nov2017
CEA 1.3 Dec2017
CEA 1.8 Mar2018
CEA 1.8 Jun2018
God have mercy, bless & save mum! Amen!

Lee
Posts: 5621
Joined: Sun Apr 16, 2006 4:09 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ NOV/2017

Postby Lee » Sun Nov 26, 2017 5:20 pm

Thanks for the update.

All the best to you and for all the people you help here.

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!

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juliej
Posts: 2851
Joined: Thu Aug 05, 2010 12:59 pm

Re: ⓊⓟⒹⒶⓉⒺ November /2017

Postby juliej » Mon Nov 27, 2017 7:46 pm

CRguy wrote:Ok as promised in another topic, here are some details of my homegrown :
Follow Up For Those with no Follow Up Protocols

abdominal U/sound : liver, pancreas, gallbladder, biliary tree, vessels, spleen, kidneys all normal

chest Xrays (not CT) : cardiopericardium, mediastinum, lungs, pleural spaces all clear and within normal limits

abdomen / pelvis Xrays (not CT) : within normal limits and expectations

mild degenerative changes in thoracic spine and hips ( = Thank you to all my karate training partners ! :mrgreen: )

This imaging was done now, being 16 months after last CAP CT scan. We are planning another set next year, with a tentative date for next CAP CT in 2 years, making it a full CT every 3 years since leaving the BCAA. The Xrays U/sound will continue to be yearly unless otherwise indicated and as mentioned a CT, MRI or PET can be added at anytime if needed.

CEA, CA 19-9, PSA are being done every 6 months
My regular blood tests are also every 6 months for FBS, HgbA1c, liver enzymes etc.

SO my friends ... that seems to be it for now

Moving forward one step at a time in CR land
Harmony to ALL on the Journey
CRguy

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
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

cmrl
Posts: 172
Joined: Mon Apr 21, 2014 8:39 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ NOV/2017

Postby cmrl » Mon Nov 27, 2017 8:32 pm

Great news!
Resection of splenic flexure 7/24/13
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal


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