Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 15/2021

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CRguy
Posts: 10319
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Fri Dec 27, 2019 7:29 pm

I repurposed your old TV light music show monitor ! :mrgreen:

Actually I designed a "homebrew" plan using ultrasound scans and survey xrays to get multiple imaging modalities
done after I was officially released from the Onco care at the Cancer Agency.

My Doc is on board and we sit down to review things, so if a there are any "WTF is that?" moments
we get into doing CT / MRI / PET ... now only as required and indicated by survey scans.

I figured I'd had enough radiation already with all my CTs so the xrays and U/sounds
don't add to the total very much. Still getting c-scopes as recommended by CRC surgeon
and doing some kind of blood work every 3-6 months as a routine.... again more extensive workups only as required.

Sorry gotta go now
back into the workshop to get the theremin retuned to scream LOUD and Proud
for the World Junior Hockey Championships :mrgreen:

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

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Mon Dec 30, 2019 6:45 pm

CRguy wrote:Sorry gotta go now
back into the workshop to get the theremin retuned to scream LOUD and Proud
for the World Junior Hockey Championships :mrgreen:

And.....

CANADA BEATS GERMANY 4-1 !!!!!!

Bring on the screamin' theremin! :D :D :D :D

Now on to the Czechs!!!

JJ
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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CRguy
Posts: 10319
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Mon Dec 30, 2019 8:05 pm

JJ

Sincere HARMONY and GRATITUDE
for NOT mentioning the Russia game :twisted: :twisted: :twisted:
:mrgreen: BUTT then.... after all ... you are family and Team CR
...SO you knows da' rules !!!
:mrgreen: :mrgreen: :mrgreen:

I think we may need the original Altec Lansing "Voice of the Theaters"
with amps running on "eleven" :shock: for the Czech game

WORD !

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

MetastaticEquilibria
Posts: 74
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

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

Postby MetastaticEquilibria » Thu Jan 02, 2020 1:00 am

Just watched “First Man.” As soon as I heard the Theremin in the soundtrack, I thought of yours.

Reading around, it seems Neil Armstrong was a fan of the Theremin. So you have that in common with him!
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
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
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

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CRguy
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Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Jan 15/2020

Postby CRguy » Wed Jan 15, 2020 11:49 pm

Sorry for being MIA with an update ... :shock:
Had a very hectic ... BUTT ... fun and family filled Christmas season
Dealing with unusual weather around here and just trying to stay safe and warm !!!!!

Recent Imaging and bloods ALL looking good, as in
" no further scans or follow ups required "

My Doc and I have decided to wait on any CT decisions, until at least this summer, and likely not until NEXT year ... 2021.
I have had a shitload of them and we are looking at total radiation doses now that CRC things seem to have been kicked to the curb.

Modified mini-blood tests will continue every 3-6 months for regular monitoring and additions added, as indicated by
any new changes or problems. I see her after each set of tests so I am always in " follow up " which is just fine by me.

CT / MRI / PET ...all available as needed ... AND
Gratefully, thankfully NOT needed at this time :D

Sending MEGA Cheers and POSI Vibes to ALL on the Journey

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

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Jan 15/2020

Postby juliej » Thu Jan 16, 2020 6:46 pm

CRguy wrote:Recent Imaging and bloods ALL looking good, as in
" no further scans or follow ups required "

WOO-HOO!!!!! That's what I want to hear!!! :D :D :D

Here's to a lifetime of health and mind/body/spirit harmony.

xoxo,
JJ
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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CRguy
Posts: 10319
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Jan 15/2020

Postby CRguy » Thu Jan 16, 2020 11:22 pm

WORD ! JJ ... and backatcha' MEGAfold !!!!

Harmony sista'
with you always... on the Journey

CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 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: 10319
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 30/2020

Postby CRguy » Thu Jul 30, 2020 5:26 pm

Just added a few numbers to my topic post because of delayed full blood tests done in June instead of March and June
(thank you Covid-19 ...... NOT !)
All things holding nicely at this time :mrgreen:

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

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Atoq
Posts: 395
Joined: Wed Oct 25, 2017 9:31 am

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 30/2020

Postby Atoq » Fri Jul 31, 2020 3:03 am

Congratulations and cheers to you! :mrgreen:

Best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED

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CRguy
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Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 30/2020

Postby CRguy » Fri Jul 31, 2020 11:40 pm

Harmony sista'
:mrgreen:

CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 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: 10319
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 15/2021

Postby CRguy » Tue Jun 15, 2021 1:32 am

Sooooo ...
for anyone keeping score here :shock: :mrgreen:
I am back in for Xray/ultrasound imaging as part of my "less is more" follow up protocol
As in LESS ionizing radiation
and MORE "eyes" on the imaging modalities !

will update when results are in

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

stu
Posts: 1505
Joined: Sat Aug 17, 2013 5:46 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 15/2021

Postby stu » Tue Jun 15, 2021 2:51 am

Hope it goes well !
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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beach sunrise
Posts: 502
Joined: Thu Mar 05, 2020 7:14 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 15/2021

Postby beach sunrise » Thu Jun 17, 2021 6:23 pm

Hope all goes well! Let us know.
I am always following you :)
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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CRguy
Posts: 10319
Joined: Sun Feb 10, 2008 6:00 pm

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 15/2021

Postby CRguy » Thu Jun 17, 2021 10:42 pm

Thank you both !

I need to book a virtual consult to chat with her and she will have the reports by today BUTT ...
I am, as our friend Eric ( brownbagger ) used to say
" busier than a one armed paper hanger :shock: "

Bloods were pretty good in april .. Sooooooooo

will letcha'll know when I do

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

Utwo
Posts: 276
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 15/2021

Postby Utwo » Sat Jun 19, 2021 8:08 pm

CRguy wrote:I am back in for Xray/ultrasound imaging as part of my "less is more" follow up protocol

CRguy, are you saying that liver ultrasound is as effective as CT scan?
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas


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