2 years since diagnosis

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Markdale
Posts: 107
Joined: Wed Dec 02, 2020 4:45 pm

2 years since diagnosis

Postby Markdale » Mon Sep 05, 2022 11:20 pm

Hi everyone, I’m now 2 years since diagnosis. When I first found out I didn’t think I would last this long. It’s been more than a year since chemo finished and I’m still in relative good health. Recently a nodule has grown a mm and my cea was 8.6 but I’m hoping it was a result of inflammation post sabr I have a ct/pet scan in 2 weeks to see what’s up.
I think I have logged in to this site nearly everyday, hopefully I can slowly taper off but it’s been a big help. A big problem I have is it feels like cancer is all I’m about now it’s always on my mind hopefully if I remain in good health I hope it slowly drifts to the back of my mind.
I don’t post much here as others have much more knowledge than I do I can just post my experiences.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 2 years since diagnosis

Postby claudine » Tue Sep 06, 2022 2:00 pm

I don’t post much here as others have much more knowledge than I do I can just post my experiences


Which is the case for most on this forum; keep sharing them, it is so beneficial and a crucial complement to the published literature! I hope your scan comes back clear XXXXX
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

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: 2 years since diagnosis

Postby roadrunner » Tue Sep 06, 2022 4:34 pm

Markdale:

An interesting topic. I’m a little over 3 years out from diagnosis and am in an uncertain but hopeful state on the issue you mention. I am by no means certain, or even optimistic, that I’m out of the woods, but am for now NED and feel as good as I ever have. I wouldn’t say that cancer ever leaves my consciousness completely for long, but I think that’s ok. It has sharpened my enjoyment of, and urgency for, life. I have said in the past that if it doesn’t get me, it will have been a great gift (despite a few scars and dings to QOL along the way). That said, I’m grateful when I do forget it for a while, also. I’m never going back to that person I was before, but I try to do everything I can to enjoy the person I am now (some days I succeed better than others). I am beyond grateful that I’m here and healthy enough to make that effort. I do think everyone is different, and so I hope you find your peace with this, whether it’s acceptance or forgetfulness. Not sure if that was helpful, but I hope so.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: 2 years since diagnosis

Postby beach sunrise » Tue Sep 06, 2022 5:27 pm

I hope for you to have a clear scan. Keep us posted.
I have to say even though cancer hangs over us we all should live life the best we can and not let cancer in on everything we do.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -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
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 2 years since diagnosis

Postby DarknessEmbraced » Sat Sep 10, 2022 7:36 am

I hope it was just inflammation. *hugs*
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! :)

Markdale
Posts: 107
Joined: Wed Dec 02, 2020 4:45 pm

Re: 2 years since diagnosis

Postby Markdale » Thu Sep 15, 2022 9:46 pm

I had the ct/pet scan yesterday. The oncologist said there appears to be a recurrence at the site of the wedge resection along the staple line and cea has doubled to 20 in 3 months, there was still some inflammation. All disease is still confined to the right lung, rest of the body is still clear. The oncologist will organise a mdm and I will have an appointment with the radiation oncologist to see if sabr is still an option. She spoke about chemo did not recommend folfoxiri but folfox. My thinking is if folfoxiri didn’t kill the Mets something weaker definitely won’t and it will put me on a chemo for life path, but maybe some systemic treatment will be of benefit. I will have another scan in 2 months to see what’s happening and go from there.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: 2 years since diagnosis

Postby roadrunner » Fri Sep 16, 2022 3:35 pm

Mark: Sorry you got this news. It sounds like you have very limited disease even if it is a recurrence, though, which is good. I couldn’t quite tell from your post, but wouldn’t there still be surgical options as well as SBRT and other ablations (e.g. cryoablation or radio frequency ablation)?
If nothing else has surfaced, I would think you’d want to look at those options for local control, with the onc’s current recommendation more focused on systemic therapy. If all of that’s right, I would ask about surgical/ablative options and why the onc thinks the recurrence merits systemic therapy when the original finding didn’t? Perhaps I’m missing something, but doesn’t this development just imply that the resection margin wasn’t big enough (I’ll admit that recurrence after wedge resection is not something I have read about, so perhaps I’m missing something)?
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Markdale
Posts: 107
Joined: Wed Dec 02, 2020 4:45 pm

Re: 2 years since diagnosis

Postby Markdale » Sat Sep 17, 2022 4:24 am

Thanks roadrunner, I told the onc that I want to go local control. I think whenever something new comes up they almost always send it to a multidisciplinary meeting where the other specialties get to voice their opinion. I think everything that has been in the right lung has been there since my initial diagnosis 2 years ago. I have never had such a high cea before even when I had the primary tumor still in, I’m worried there might be something else going on
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed


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