Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Nov 27/2019

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ March 23/2019

Postby CRguy » Sun Apr 21, 2019 12:53 am

Thanks homie !!!

I intend to embody " takes a lickin' and it keeps on tickin'..." Timex style
OR .... Energizer Bunny style ! ... keepin' with the Easter bunny theme here :mrgreen:

Cheers
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

Bob_Weiss
Posts: 742
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ March 23/2019

Postby Bob_Weiss » Sun May 12, 2019 2:10 pm

I joined in April 2010 and for 5+ years I consulted this site almost daily, and occasionally posted. The active members here at that time are mostly gone; either cured or no longer alive. I remember them fondly- Brownbagger, Starbucks, numerous others. I still check this site every few months, and offer suggestions when I have something to contribute.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ March 23/2019

Postby CRguy » Sun May 12, 2019 8:42 pm

...AND my friend, sometimes just "being here" to offer support is enough

Harmony
CR
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

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 26/2019

Postby CRguy » Wed Jun 26, 2019 9:10 pm

Just a brief follow up here :

pretty normal echocardiogram in March... tech said I had a very photogenic heart :shock: :oops:
Saw Cardiac honcho in May and he was happy, so is now playing around with statins etc.
... we'll see.

routine monitoring bloods all pretty normal, so seeing family Doc Friday
to review lab / echo reports and schedule my 3 year colonoscopy for the fall.

so far ... so good
will keep y'all posted

Cheers 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

Ron50
Posts: 695
Joined: Fri Feb 10, 2006 7:04 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 26/2019

Postby Ron50 » Sat Jul 06, 2019 7:48 pm

CR your situation is a good reminder to all cancer sufferers that there is a whole book full of stuff trying to kill us. It is not just cancer we have to worry about. I have just spent two days in hospital, I have been under the control of a senior cardiologist for over four years. I remember an oncologist telling me that the moment you have colorectal chemo you should be considered as stage 1 heart failure. It is that cardio toxic.. I suffer over 11000 premature atrial and ventricular premature ectopics a day. two years ago I was in hospital with acute vertigo. Two ecg"s recorded atrial flutter consistent with atrial fib. On Thursday I went to my normal family medicine clinic for my regular INR test. I have been on warfarin since my atrial flutter dx. I was not feeling well so they carried out some obs. My BP was 179/60. They did blood tests. I went home (at my insistence ) Two hours later I got the call to go to hospital immediately I had troponin (the heart attack enzyme) in my blood. They did 5 more blood tests whilst I was in er. Only one @ 11 was under the <15 limit for safe levels of troponin. The highest was 27. Based on the lack of substantial evidence on the several ecgs they sent me home with no treatment and no suggested follow up. I asked about the troponin and received the usual 'who knows ''reply. Not Happy, Ron. Ps All the best to you CR, Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

NHMike
Posts: 2334
Joined: Fri Jul 21, 2017 3:43 am

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 26/2019

Postby NHMike » Sat Jul 06, 2019 11:28 pm

Ron50 wrote:CR your situation is a good reminder to all cancer sufferers that there is a whole book full of stuff trying to kill us. It is not just cancer we have to worry about. I have just spent two days in hospital, I have been under the control of a senior cardiologist for over four years. I remember an oncologist telling me that the moment you have colorectal chemo you should be considered as stage 1 heart failure. It is that cardio toxic.. I suffer over 11000 premature atrial and ventricular premature ectopics a day. two years ago I was in hospital with acute vertigo. Two ecg"s recorded atrial flutter consistent with atrial fib. On Thursday I went to my normal family medicine clinic for my regular INR test. I have been on warfarin since my atrial flutter dx. I was not feeling well so they carried out some obs. My BP was 179/60. They did blood tests. I went home (at my insistence ) Two hours later I got the call to go to hospital immediately I had troponin (the heart attack enzyme) in my blood. They did 5 more blood tests whilst I was in er. Only one @ 11 was under the <15 limit for safe levels of troponin. The highest was 27. Based on the lack of substantial evidence on the several ecgs they sent me home with no treatment and no suggested follow up. I asked about the troponin and received the usual 'who knows ''reply. Not Happy, Ron. Ps All the best to you CR, Ron.


I was in the ER for dehydration a year ago. I lost the sensation of thirst with the reversal.

I bought an HRM watch afterwards to keep an eye on heart health and have worked on diet an exercise to improve heart health. But yes, challenges continue to pop up.

I'm probably dehydrated right now. Everything runs through me right now. I can't seem to drink anything without a trip to the toilet.

So yes, we're a bit damaged in order to save our lives.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 26/2019

Postby CRguy » Sun Jul 07, 2019 12:17 pm

Ron50 wrote:Based on the lack of substantial evidence on the several ecgs they sent me home with no treatment and no suggested follow up. I asked about the troponin and received the usual 'who knows ''reply. Not Happy, Ron. Ps All the best to you CR, Ron.

You've been through the wringer again Ron.
Keep pushing those Docs to get to the bottom of things

Best wishes buddy
Cheers and Harmony
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

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 26/2019

Postby CRguy » Sun Jul 07, 2019 12:19 pm

NHMike wrote:So yes, we're a bit damaged in order to save our lives.

So true Mike, what you and Ron talk about is just some of our
" keepin' on ... KEEPING ON ! "

Cheers
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

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Sept 23/2019

Postby CRguy » Mon Sep 23, 2019 12:01 pm

Just some blood tests lately = all good so far
Waiting on Doc appt and upcoming scoping in October
SO ....
will give a full update after that and set up my
" DO try this yourself at home kids ... " homemade follow up monitoring, for later in the year !!

Cheers ALL !
The Journey continues
one step ... ahead of the other

Harmony
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

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Oct 22/2019

Postby CRguy » Tue Oct 22, 2019 3:48 pm

So my regular annual check up is now complete.

All things seem in order and the pathology report on the single small polyp removed
from my Oct c-scope is classed as :
tubular adenoma, negative for high grade dysplasia = pathology speak for benign !
CEA, CA19-9, PSA all normal.

I have other routine mini blood panels in December and we have set up the
follow up abdominal ultrasound with chest / abd / pelvic xrays to follow in spring 2020.
Other imaging or testing to be determined as required.

THAT is my surveillance plan so far.

One step at at time
one post at a time

Cheers and Harmony 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

User avatar
ANDRETEXAS
Posts: 625
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Oct 22/2019

Postby ANDRETEXAS » Wed Oct 23, 2019 12:09 am

CONGRATULATIONS !!
2014
2/10 - 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
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Oct 22/2019

Postby CRguy » Wed Oct 23, 2019 11:27 pm

Cheers to that, buddy !!!!

Have a 3 year callback for scopin'
and just keeping on .... KEEPIN' ON until then
keeping it real as best I can :mrgreen:

Harmony
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

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Nov 27/2019

Postby CRguy » Wed Nov 27, 2019 6:27 pm

Just to keep things current here :

had a follow up EMG done with signs of improvement for the ulnar nerve syndrome. Interesting in and of itself because they are also monitoring the prior neuropathy from oxaliplatin AND according to the tests, nerve conduction is near normal even though I still have mild sensory deficit in the 4th and 5th fingers of each hand.

I have booked my "homemade" follow up monitoring imaging and more blood tests for just before Christmas this year
and my follow up monitoring consult with my GP early in the new year once all the reports are back to her.

SO... just keeping on KEEPIN" ON !!!!!

Cheers and best wishes to all on the Journey
and Happy Thanksgiving to all homies south of '49 tomorrow !
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 36 guests