Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ May /2024

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Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ May /2024

Postby CRguy » Sat May 30, 2015 4:58 pm

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
Sep-Nov 2017 : bloods, ultrasound, xrays (CAP)
Sep-Nov 2018 : bloods, ultrasound, xrays (CAP), chest CT
Dec 2019 : bloods, ultrasound, xrays (CAP)

( 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 May /2024 Update, my tally of the number of times I've had these things done appears to be :

CT = 14 ( CAP = chest/abdomen/pelvis )
CT = 2 chest/abdomen
CT = 3 abdomen/pelvis
CT = 2 head
PET = 1
MRI = 2
colonoscopies = 8
sigmoidoscopies = 2
chest/abdominal xrays = 12
abdominal ultrasounds = 10
cardiac ultrasound = 2
electromyogram = 2
full blood panels = 42
monitoring mini-panels = 20
CEA = 35 tests done( not a marker for me, never over 1.4 )
CA 19-9 = 14 tests done, all normal
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:
and of course my "journey" with FOLFOX Hi I'm do you like me so far ? :twisted: )

Cheers and Harmony to all
CRguy still on the Journey
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

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Re: Review of my Journey so far

Postby ANDRETEXAS » Sat May 30, 2015 5:09 pm

Looks like you've kept the medical field alive by yourself. :D
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy


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Re: Review of my Journey so far

Postby CRguy » Sat May 30, 2015 5:11 pm

I do get a few frequent flyer points from some of the docs :mrgreen:

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Re: Review of my Journey so far

Postby elise » Sat May 30, 2015 7:00 pm

I love it CR guy :) I've been here for a while and had pieces a lot of it together but still nice to get a tidy outline :)

Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
Feb - NED
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
Ap, Oct - NED
Mar - NED

Nik Colon

Re: Review of my Journey so far

Postby Nik Colon » Sat May 30, 2015 7:06 pm

Thx for the details :)

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Re: Review of my Journey so far

Postby rp1954 » Sat May 30, 2015 7:37 pm

It's a great example, CRguy.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

justin case
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Re: Review of my Journey so far

Postby justin case » Sat May 30, 2015 8:05 pm

Oh hell,
I have nothing to do for a year, so please send me your medical history, and I will make sure there are no mental instabilities included in your files :roll: :roll: :roll:
One needs organization,
8) 8) 8) 8) 8)
7/11 diagnosed Stage 2 colon and rectal cancer
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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Facebook Username: teddimcfarland

Re: Review of my Journey so far

Postby Teddi » Sat May 30, 2015 8:34 pm

Thank you. I have been curious.

47 at diagnosis
Colonoscopy, biopsy, CT, PET 6/14
Rectal cancer (tentatively) Stage III-b, MSS
Xeloda and radiation 25x finished 8/14
FOLFOX 5 cycles
Surgery 1/23/14 ~ T1N0MX ~ temp illeostomy
FOLFOX 3 cycles = total of 8
Illeostomy reversal 4/8/15
Clean scans x2, clear colonoscopy 9/15

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Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: Review of my Journey so far

Postby vilca11 » Sun May 31, 2015 10:12 am

Thank you, CR - impressive journey and will give hopes to many others. I was curious about your story too, just did not want to intrude questioning you about it... I can conclude from your story, that you will not need more space in your signature - you will stay NED now until your destined hour somewhere in 80s. Congrats on winning in such a long taught fight - my respects!
Hugs. Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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Re: Review of my Journey so far

Postby CRguy » Sun May 31, 2015 10:43 am

Thank you all for your support. I will be doing my best to keep moving ahead, BUTT truthfully ... there are so many folks here who have gone through way more than I have and they are to be congratulated for moving forward on their own Journey, and for sharing more with us than I have lately.

Harmony and strength to all
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

Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Review of my Journey so far

Postby peanut_8 » Sun May 31, 2015 10:55 am

Thanks CRGuy. Love that Feb 2008 was such a happy month.
female, diagnosed Jan 14, RC stage 2a, age 56
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Location: Ontario, Canada

Re: Review of my Journey so far

Postby Cb75 » Sun May 31, 2015 12:48 pm

39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

Posts: 234
Joined: Fri Dec 06, 2013 4:43 pm

Re: Review of my Journey so far

Postby Girl111 » Sun May 31, 2015 3:13 pm

Very impressive
Dad diagnosed stage 3 cc nov 13
Bowel resection march 14
Started xeloda
1 liver met and 1 node ( small)
Started irinotecan - failed
Poss nano knife now and oxyplatin
Hope the chem works !

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Joined: Thu Apr 02, 2015 9:26 am

Re: Review of my Journey so far

Postby jalusa » Mon Jun 01, 2015 9:53 am

Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

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Re: Review of my Journey so far

Postby RNWife » Mon Jun 01, 2015 10:07 am

Cheers, cheers CHEERS !! You have been such a tremendous help to us :D
DH Rectal CA Nov 2014, age 60
Stage IIIB (T3, N1, Mx)
Lg tumor 9 cm, 10-15 cm from anal verge
XRT + Oral Xeloda x 5.5 wks
LAR w/Ileo 3/6/15
Ileo Reversal 4/1/15
Xelox 5 rounds
First post-tx scan NED 10/2015
CEA 1.4
PAC out 10/2015
Thank you ALL for carrying us through :D

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