Recurring

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beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Recurring

Postby beach sunrise » Sat Jan 06, 2024 11:21 pm

Had signatera draw yesterday. It doesn't work for me as it aways comes up neg but we will see this time.
CEA is up to 8.x as of a few weeks ago, so here we go again. Blood draw scheduled for Tues to see whats happening now. I knew it was highly likely I would recur since blood draw for RGCC testing during surgery in Germany showed 3.1 cancer cells per mililiter or something like that running around. Under 2 and preferably under 1 is best.
Others blood panels are up and down. IL-8 is 98, should be under 60.
Game plan is changed up to prevent growth and spread of course.
PET/CT on the 16th then consult with Germany.
Thats my New Years news.
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

Pagola44
Posts: 340
Joined: Mon Jul 03, 2023 7:57 pm

Re: Recurring

Postby Pagola44 » Sun Jan 07, 2024 12:11 am

:( :( sorry to hear beach,
I know you're a smart and strong person (based on the way you post)..whatever it is (fingers crossed it's nothing) i know you'll be ready for the fight! :!:
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

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

Re: Recurring

Postby DarknessEmbraced » Sun Jan 07, 2024 7:56 am

I'm sorry you're going through this. *hugs* I hope it's not a recurrence.
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! :)

zephyr
Posts: 369
Joined: Thu Aug 18, 2016 7:31 am

Re: Recurring

Postby zephyr » Sun Jan 07, 2024 11:38 am

Please feel free to PM me.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

roadrunner
Posts: 465
Joined: Sun Jan 12, 2020 8:46 pm

Re: Recurring

Postby roadrunner » Sun Jan 07, 2024 7:17 pm

Sorry to hear this, Beach. I know you’re an informed, active participant in your treatment and will get on top of this asap. I hope you get the best possible resolution of this current uncertainty and have good luck from there!
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

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beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: Recurring

Postby beach sunrise » Thu Jan 11, 2024 9:24 pm

Thanks yall!
Signatera neg. It was neg all the way thru when I had lung mets but we do it anyway.
Bloodwork and scan will give a bigger picture.
next week. I am anxious for Germany to review and give their expert opinion. I alreadysent the expanded bloodwork and signatera.
I have told 2 surgeons so far if it comes down to it we will clear off the work table in the garage, get some knock out drugs from dealers down the street and take care of it ourselves lol I was just kidding of course but the look on their faces was priceless!
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

skimom
Posts: 78
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: Recurring

Postby skimom » Fri Jan 12, 2024 12:19 pm

beach sunrise wrote:I have told 2 surgeons so far if it comes down to it we will clear off the work table in the garage, get some knock out drugs from dealers down the street and take care of it ourselves lol I was just kidding of course but the look on their faces was priceless!

I love your humor and positive attitude so so much! Haven’t been on here in a while. Needed to do my best to take a pause from thinking of damn cancer 24/7.. Prayers that your upcoming scan is good and you’re able to keep this nonsense under control! Praying for ya and for everyone on here of course.
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
31
21
18
9/2023 Switch back to FOLFOX due to new lung nodules
11/23 FOLFOX fail CEA up to 62

Pagola44
Posts: 340
Joined: Mon Jul 03, 2023 7:57 pm

Re: Recurring

Postby Pagola44 » Fri Jan 12, 2024 8:46 pm

please keep us updated

sending prayers and love
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: Recurring

Postby beach sunrise » Fri Jan 12, 2024 11:28 pm

Well Thank you, skimom! Or maybe our veterinarian could do the surgery on me ha.
Scan Tues 7:30 am sharp. I hope we can get off the mountain. Snow and ice is suppose to get really bad Monday and Tuesday. Just my luck!
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

I_will_fight
Posts: 148
Joined: Mon Jun 29, 2020 3:38 pm

Re: Recurring

Postby I_will_fight » Sat Jan 13, 2024 4:37 am

beach sunrise wrote:Thanks yall!
Signatera neg. It was neg all the way thru when I had lung mets but we do it anyway.
Bloodwork and scan will give a bigger picture.
next week. I am anxious for Germany to review and give their expert opinion. I alreadysent the expanded bloodwork and signatera.
I have told 2 surgeons so far if it comes down to it we will clear off the work table in the garage, get some knock out drugs from dealers down the street and take care of it ourselves lol I was just kidding of course but the look on their faces was priceless!


Sorry to hear this Beach sunrise.

I hope you can get a plan soon to address this new development.

Signatera just does not work on lung mets unfortunately.
It is meant to work on liver and lymphatic mets (or so have I read)

Good luck with your scan, hope the disease is confined to a small place and surgery is possible.

Best regards

Javi
46 yo male Spain
06/2020 - 6cm T3N0M0 CC splenic flex
3 and 4 mm lung ground glass
lymp 0/37
dMMR MSH6
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, optimistic surgeon.
11/20 - 4 x CAPOX completed.
12/20 - Clear colonoscopy
02/21 - MRI liver lesion unchanged.
11/21 - Clear CT
02/22- Colonoscopy: Sessil polyp 3mm
05/22- Clear CT
06/22- Negative Signatera
12/22- Negative Signatera
01/23- Clear CT
07/23- Clear CT, normal markers.
09/23 - Negative Signatera
01/24 - Clear CT

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: Recurring

Postby beach sunrise » Sat Jan 13, 2024 4:17 pm

Thanks for the info, Javi. At least I know its not travelling to liver and lymphs!
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

Pagola44
Posts: 340
Joined: Mon Jul 03, 2023 7:57 pm

Re: Recurring

Postby Pagola44 » Fri Jan 26, 2024 9:23 pm

Any update beach?
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: Recurring

Postby beach sunrise » Wed Jan 31, 2024 11:49 am

PET/CT scan is all clear. Sending to Germany for their opinion on what they see. Waiting game is on again according to CEA and other markers. The scan does give me more time to beat it down as long as possible.
I have added fenben Pure per pccr' post a while back, pomegranite supplement, Ivermectin every day instead of every 36 hrs, d-limonene. Hopefully I can stay stable longer by adding those. I have also been researching sound vibration therapy and might get the home machine called the PERL. Idk, its so epensive. More thought needed and def more research before I commit.
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

skimom
Posts: 78
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: Recurring

Postby skimom » Wed Jan 31, 2024 12:23 pm

This is the Best news I’ll hear today!!!! I am so so happy to hear clean scans beach sunrise! And I know you know what to do to ensure they stay that way :)
47yo F at DX
DX 12/11/22 Stage IV (liver & lung mets) KRAS PIK3CA
12/15/22 Primary tumor removed from Transverse Colon (4.3x4.0x0.6cm G2 3/15 lymph nodes. Clear margins)
01/06/23 started Folfox (10 cycles)
Initial CEA 5608
CEA after 4 rounds 1319
CEA after 6 rounds 427
CEA after 9 rounds 95
HAI pump installed 06/20/23
Start FOLFIRI and FUDR 07/05/23
CEA down to 37
31
21
18
9/2023 Switch back to FOLFOX due to new lung nodules
11/23 FOLFOX fail CEA up to 62

utahgal7
Posts: 202
Joined: Fri Sep 11, 2020 12:04 pm

Re: Recurring

Postby utahgal7 » Wed Jan 31, 2024 2:41 pm

I am so glad to hear your scans are clear!!! That's amazing and wonderful news!
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles


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