and I'm still here too

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Kiter
Posts: 19
Joined: Tue Oct 06, 2020 7:59 pm

and I'm still here too

Postby Kiter » Fri Jun 02, 2023 7:16 pm

... because I didn't post for a few years, I thought I would drop a line (as plastikos recently did) to say "I'm still here" too. I always wonder/worry when people in groups like this just disappear. It's all to easy to think they are gone for good. Well, I'm still here.

When last I posted I had completed 12 rounds and took a 6 month chemo vacation upon which my CEA jumped from 8 to 2550. So, back on the bandwagon I went. Yesterday marks the completion of my 45th round of chemo (Ignoring the failed attempt to use Xeloda). Yep, it's chemo every other week for me, but I continue to tolerate the process well so it's not all bad. Had a liquid biopsy done recently (new'ish procedure for us colon cancer folks) that opened some doors to different treatments. But in the final analysis we decided to stay the course with FolFiri+Avastin and the 5-FU pump until it's efficacy diminishes. This based on the expected side effects given that the benefits are about the same.

In the mean time I keep doing chemo and keep active with Pickleball a few hours each day (and of course all the yard work I have too!). The pattern of Chemo (3 days), Recovery (2 days), and Feeling Good (9 days), repeated over and over is occasional mind numbing, but it works so I'm not really complaining (too much! :roll: )

Stay strong everyone!
D
Diag Aug 2020, age 56, male
Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
FolFox+Avastin 10/5/20 w/CEA 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th rnd 4/6/21: CEA 8; CT Scan 85-90% reduction in tumors
Sept 2021 CEA low 600s
Oct CEA 1700; CT scan shows tumor growth
Started Avastin + Xeloda
2 weeks later CEA at 2550, cancelled Xeloda
11/1/21 started FolFiri+Avastin every 2 weeks
June 2023; round 45; CEA steady at ~1000. Tumors unchanged. Blood tests look good

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

Re: and I'm still here too

Postby nmorgen » Fri Jun 02, 2023 9:57 pm

Hi Kiter,
Thank you for checking in. I’m glad you are tolerating your treatments.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
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

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: and I'm still here too

Postby rp1954 » Fri Jun 02, 2023 10:24 pm

Good that you got something to work, likely the Avastin was a big help.

Your peak CEAs are so high, I'm really wondering whether there is much CA199 and LDH involved, and whether you've been tested for KRAS/BRAF mutant or wild.
You previously indicated some supplements with the Xeloda maintenance, what are you doing with Folofiri+AVastin?
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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

Re: and I'm still here too

Postby DarknessEmbraced » Sat Jun 03, 2023 1:38 pm

I'm glad your chemo is going well. :)
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! :)

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

Re: and I'm still here too

Postby beach sunrise » Sat Jun 03, 2023 1:52 pm

Yes, I wonder how people are when they go silent. Thank you for the update on how things are going. I am happy that you are tolerating the treatment so well.
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

Faith42
Posts: 34
Joined: Mon Sep 01, 2014 4:37 am
Location: New Mexico

Re: and I'm still here too

Postby Faith42 » Sun Jun 04, 2023 10:08 pm

I joined this forum years ago but haven’t been on in awhile. I thought I’d post that I’m still here too. Currently NED! Life is good! Don’t give up you stage IVs. Love to all of you! Diana
Mom 42 at Dx
Child 11 yo
Dx 1/12 Stage IIIT N2b. 11/57 nodes
Chemo 3/12
Dx 8/14 Stage IV to lung
10/14 2 lung mets surgically removed. 2 VATS left and right
Chemo 4/15
Rising CEA and met to right lobe of liver 1 cm. surgery in 6/15
Rising CEA and cryoabeltion 10 mm on left lung in 12/16
Rising CEA and met to liver. Surgery 10/17
Cryoabeltion 12/17
NED 2/14/18
Warrior and Fighter

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

Re: and I'm still here too

Postby DarknessEmbraced » Sun Jun 11, 2023 10:52 am

I'm glad your chemo is going well. L(
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! :)

User avatar
Cowgirl918
Posts: 326
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: and I'm still here too

Postby Cowgirl918 » Thu Aug 17, 2023 5:38 pm

This is Cowgirl918. I have been away for a few years also. Seeing you on here put a big smile on my face today. Thanks for that. I had been showing clear then Neuroendocrine tumor (NET) popped up in small bowel. Two deep lymph nodes lighting up in mesentery. Surgery on Sept. 1 to remove all that can can be removed with possible right hemi-colectomy. So of course here I am . Hope you continue to do well. Keep kicking butt!
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery


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