Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ December /2023

Please feel free to read, share your thoughts, your stories and connect with others!
JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ June 13/2016

Postby JDMNYC » Sun Sep 04, 2016 5:53 pm

Hey CRguy!

To someone who just had his first "suspicious" bilateral nodules pop on a survellience scan, this is a very enouraging update! :D

Congratuations and best of luck!

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

mtipte
Posts: 80
Joined: Mon Dec 19, 2016 4:35 pm
Facebook Username: mario tipte
Location: Lima, Peru

Re: Review of my Journey so far -> ⓊⓟⒹⒶⓉⒺ Oct. 13/2016

Postby mtipte » Tue Dec 20, 2016 6:56 am

Wow impressive.
Dear Mum 60 y/o
dx 09/16 RC III CEA 9
Chemo/rad 28 from 10/16 till 12/16
Xeloda
multiple lymph nodes
Adenocarcinoma low grade invasive
Now 2000 mg Xeloda for 2 weeks as maint. before surg.
24/01/17 CEA 4,9
APR surgery permanent colostomy :( 24/03/17
3/26 nodes involved -LVI - clean margins
Staged after surgery: T3N1Mx
Infection due to bladder problems. Slow recovery.
CEA 1.7 :)
Adj. Chemo Xelox 6 rounds 29/04/17
After round 3 CT Scans Clear 15/07

God is faithful. Only Jesus.

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ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

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

Postby ocstacy » Sun Jun 25, 2017 12:26 am

Wow,you have a story! I don't have any type of cancer but I am just learning more about this colorectal cancer on behalf of my mom (as I am going to the bathroom) :o
So thank you for sharing your brave story with us. I one class away from getting into my ultra sound program. I shadowed at the hospital last February and saw 10 patients with all types of cancers. I find it neat to learn more about this and working with the Radiologists, you get to help diagnose.

Anyhow, I will def. k.i.t with you and best wishes to you. My 1st colonoscopy is in July 2017, scared but early diagnosis is best!
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

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

Postby LeonW » Sun Jun 25, 2017 7:02 am

Sorry for having missed your update until today . . .

WOW. Great news.
Think of it: your ongoing NONrandomized UNcontrolled experiment with N=1 report 100% success !

Keep it up. Congrats for being the lucky one.
Best wisheds, Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

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CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Mon Jul 24, 2017 12:25 am

July 2017 update

lost my best friend here :
rest in peace BrownBagger

Harmony bro'
CR

Brearmstrong
Posts: 112
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

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

Postby Brearmstrong » Mon Jul 24, 2017 8:32 am

I am so sorry. I am relatively new here but read every post and was so impressed by the people on here who take the time almost daily to respond to posts. You guys are heroes to me. You are among them and I am so so sad to read this. His bike riding inspired me and I just am speechless. I didn't know things could turn so quickly when one is feeling good. So heartbroken for you and his family and friends. Sigh.... this disease...
50 F diag 1/17
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Nov 17 PET p aortic nodes Stage IV
Folfori w/avastin
May 18 surgery on nodes xeloda 2yr
Aug 18-May 20 NED
July 20 hysterectomy
July 21 vats right lung
Clinical trial- failed liver Mets biopsy shows now poorly differentiated carcinoma.
HAI pump at MSK may 2022
Nov met to pancreas- causing pain
Radiation ablation to pancreas Dec 22
New lung Mets watch and wait

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Jul 24, 2017 11:17 am

I'm incredibly impressed that you've gotten through all of that.
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

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Tue Jul 25, 2017 6:08 am

I'm actually feeling quite picked on , for 48 years everything I thought was serious turned out to be nothing. In the last twenty years everything I think is nothing has had a go at killing me and I am really really over it killing my friends. Stay well 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

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CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Fri Sep 29, 2017 12:46 pm

Thanks for all the support folks, much appreciated :D

Just getting into my current follow up protocols now that I am officially outta' da' big house cancer centre

I am not scheduled for any CTs ( I always had Chest-Abdomen-Pelvis numerous times as Stage IV ) because I am back with my family doctor and there are no specific protocols for someone in my position.

Summary of the plan we have concocted :

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... !

I have a VERY good doctor who is always supportive of my plans to be aggressive in follow up !!!!

more updates as they happen

Cheers all
CR
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

ashima2016
Posts: 36
Joined: Thu Dec 01, 2016 10:56 am

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

Postby ashima2016 » Fri Sep 29, 2017 2:47 pm

congratulations!

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

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

Postby peanut_8 » Fri Sep 29, 2017 4:25 pm

Image

Great news!!!
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

User avatar
CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Fri Sep 29, 2017 9:08 pm

thanx for bringing the squirrel out sista' nut

(( I am being lazy and have not moved all my phoneybucket :evil: pictures outta' their greedy little hands ))

:mrgreen:

CR 'nut
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

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Fri Sep 29, 2017 9:37 pm

Congratulations, CRGuy. Sounds like a great plan going forward.




Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

menreeq
Posts: 70
Joined: Fri Jun 30, 2017 10:26 am

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

Postby menreeq » Fri Sep 29, 2017 9:44 pm

What a story and what a thread! Thank you for sharing!
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41ls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17), 0.8 (2/28/18), 1.0 (9/17/18), 1.1 (4/16/19), 1.0 (9/24/19), 1.7 (7/8/20)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics neg for mutations, 4 VUS
Xeloda monotherapy 8/13/17-1/22/18
PET/CT 3/21/18 NED
CT C/A/P 9/17/18 NED, 3/8/19 NED, 9/19/19 NED, 5/13/20 NED

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

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

Postby peanut_8 » Fri Sep 29, 2017 10:30 pm

CRguy wrote:thanx for bringing the squirrel out sista' nut

(( I am being lazy and have not moved all my phoneybucket :evil: pictures outta' their greedy little hands ))

:mrgreen:

CR 'nut


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

CRguy personified. :mrgreen: :mrgreen:

at least in IMO
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED


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