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Posts: 328
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State


Postby benben » Fri Mar 10, 2023 8:57 am

Hello CC group.

Been sometime since I've been about. I've been so busy building a house - it's almost done.
I just wanted to chime in and say hello and give some good stats for those in the midst of the battle.

I can hardly believe it, but 3/29 will be 6 years from my initial diagnosis.

My 5 year scan was NED, CEA levels have been normal for many years. Only thing off is slightly elevated liver enzymes. (just hair above normals)
Possibly result of long term Low Carb diet. Possibly just residuals from previous NAFLD diagnosis.
I was given the boot by my oncologist! No further appointments unless "AS NEEDED". I've been passed off to Primary care.
So I'll be following up with the enzymes with PC.

Life has been next to normal for past couple years. Small improvements in bowel function over long periods of time.
I still have 3-4 movements a day. Usually one in the early morning hours like 3am and another a couple hours following when I get up for the day.
Then I may have 1 or 2 other movements during the day. All said its a vast improvement from the Post OP 12-20 times a day. So for anyone feelling like life is almost always on the toilet. It does tend to improve, at least for most.

Neuropathy seems to be completely gone, with mild exceptions. My arms do tend to fall asleep during sleeping hours easier than previously and sometimes prolonged cold brings a sense of neuropathy to the fingertips. 99% of the time I sense nothing in Neuropathy.

Keep up the fight!
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

Posts: 82
Joined: Sat Nov 05, 2022 10:31 am


Postby nmorgen » Sat Mar 11, 2023 4:40 am

Congratulations! I’m glad you are Ned and have been able to move forward with your life.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, Lynch Syndrome
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6

Posts: 813
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana


Postby claudine » Sat Mar 11, 2023 12:10 pm

Fantastic :D
Also, nice to read that LARS may continue to improve over time. It’s been 6 months since DH’s reversal and his life is still definitely tied to the toilet :(
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada


Postby DarknessEmbraced » Sat Mar 11, 2023 3:29 pm

Congratulations! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Posts: 5
Joined: Thu Dec 08, 2022 10:51 am


Postby GMTX » Fri Mar 17, 2023 12:16 pm

benben, awesome news ... inspiration for all of us. Enjoy your new home. Thanks for sharing!

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