PET/CT tomorrow

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
beach sunrise
Posts: 1041
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET/CT tomorrow

Postby beach sunrise » Mon Dec 12, 2022 1:44 pm

Update: CT scan got pushed back 1 1/2 weeks due to contrast issues so scan is tomorrow. We will find out if hammering lung node with vitamin D3, vitamin C, NAC, Bromalain, ect helps the SUV go down. SUV was 1.3.
Lung surgeon wasn't to happy to hear I contacted Germany about Rolles. Whatever!
I will pick up CD of PET/CT scan tomorrow to send to Germany. I really hope I will be a candidate considering USA options not as good % wise and risk/benefit.
Signatera still showing neg. Will redo on the 15th to make sure. I asked about the test not being good at detecting cancer with lung mets maybe. Answer was they will get back with me. Haven't got a response yet.
Last edited by beach sunrise on Mon Dec 12, 2022 2:40 pm, edited 1 time in total.
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

User avatar
Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: PET/CT tomorrow

Postby Jacques » Mon Dec 12, 2022 2:32 pm

beach sunrise wrote:... Sognatera still showing neg. Will redo on the 15th to make sure. I asked about the test not being good at detecting cancer with lung mets maybe. Answer was they will get back with me. Haven't got a response yet.

Did you mean Signatera™ ?

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

Re: PET/CT tomorrow

Postby beach sunrise » Mon Dec 12, 2022 2:40 pm

Yes, Signatera. Goodness
I wonder if it picks up on CRC lung mets? I am showing SUV of 1.3 on a 5mm lung node, CEA has risen but Signatera shows neg.
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

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: PET/CT tomorrow

Postby MadMed » Mon Dec 12, 2022 6:40 pm

According to my Onc, it is not good for lung Mets. Another crc patient of theirs was negative on Signatera but showed lung Mets on CT. She stopped sending mine after that.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

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

Re: PET/CT tomorrow

Postby beach sunrise » Tue Dec 13, 2022 3:21 pm

Thank you, Madmed!
Do you have the study papers or can you get them from your onc?
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

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: PET/CT tomorrow

Postby MadMed » Tue Dec 13, 2022 3:29 pm

I'll ask her for more details or papers. In this particular case, it was another patient of hers that had a lung recurrence while still negative on Signatera.
There seems to be indication out there:
https://ascopubs.org/doi/abs/10.1200/PO ... nalCode=po
CONCLUSION
Patients with lung-only and peritoneum-only metastatic disease have significantly lower levels of ctDNA, suggesting decreased clinical sensitivity for subclonal variants.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9390824/
From a clinical standpoint, ctDNA detection can vary by stage, metastatic burden, and the site of metastases.2-5 Kagawa et al6 observed that CRC patients with liver metastases were associated with increased ctDNA detection rates compared with the patients with lung and peritoneal metastases.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

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

Re: PET/CT tomorrow

Postby beach sunrise » Fri Dec 16, 2022 7:49 am

Thank you so much, Madmed!
PET/CT scan is off the Germany.
Now we wait to see if I am a candidate!
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: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: PET/CT tomorrow

Postby DarknessEmbraced » Sat Dec 17, 2022 7:56 am

I hope you get good news and that you're a candidate. *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! :)

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: PET/CT tomorrow

Postby Bpaint » Thu Dec 22, 2022 11:58 am

Beachsunrise—did Germany give you any indication how long the evaluation would take them? We are also waiting to here from them about YAG surgery and wondering how long the wait will be.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

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

Re: PET/CT tomorrow

Postby beach sunrise » Thu Dec 22, 2022 2:45 pm

Hi Bpaint, not sure.
Just sent everything last week.
Sent 3 1/2 yrs of medical records, 3 1/2 yrs of bloodwork spreadsheet. 2 scans.
And it is the holidays.
I will let you know when I hear from them and pllease let me know from your side too.
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

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: PET/CT tomorrow

Postby Bpaint » Tue Jan 03, 2023 10:03 am

Well, my husband isn’t a candidate. I got this response from Dr Kern this morning:

“Thanks for sending us the CT scans! Unfortunately, there are too many nodules in both lungs, many very small ones and centrally located; that means that it is very unlikely that we can detect and resect them all completely. Laser metastasectomy is only useful and makes sense if a complete resection of all nodules can be accomplished; otherwise there is no bebefit for survival of the patient.”

I hope you get better news!
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

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

Re: PET/CT tomorrow

Postby beach sunrise » Tue Jan 03, 2023 5:07 pm

I am so so sorry your husband was not a candidate. If he had a centrally located node then I might be in same boat as mine says centrally located.
Signatera is not picking up the lung met. It is neg again.
Lab corp lost my blood draw so having go redo tomorrow. Took them 3 weeks to let anyone know.
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

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

Re: PET/CT tomorrow

Postby beach sunrise » Thu Jan 05, 2023 12:10 pm

One of my labs are in, just the general order.
CEA is down 5 more points to 17.7 from 26.x (Oct result), all else looks pretty good. I started back on chronomodulated xeloda dosing about 2 weeks ago. Hammering hard on lung nodes with supplements for over a month now.
I have no recent labs to compare it to as my last one was lost so hopefully it stays moving in the right direction with chronomodulated and a variety of up dosing dupplements.
Still no word from Germany. I did send them 3 1/2 yrs worth of blood data, scans, reports.
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

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

Re: PET/CT tomorrow

Postby beach sunrise » Wed Jan 11, 2023 11:29 am

Appt with onc. His take on all the lung stuff is he is not convinced its CRC cancer still, it could be a new primary (lung cancer maybe). The ground glass lucincy could be inflammation/infection also instead of cancer. Whew
Lung surgeon wants SBRT asap but onc wants to wait until another scan in March to see if these 5mm nodes have grown.
He mentioned again tapering off xeloda and I said NO NO NO.
He said he's never had a patient so unusual. I tried to explain again about my beat down protocol ADAPT+++.
Still no word from Germany. I sent an email inquiring but haven't gotten repsonse back yet.
Consult with Boyd next week.
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

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

Re: PET/CT tomorrow

Postby beach sunrise » Sun Jan 22, 2023 4:20 pm

Reply from Germany was they have not received packet. It is somewhere in the nets blackhole I guess. So sent hard copies thru DHL on the 13th. They will receive it Monday. So, another wait. Hopefully decision can be made fast.
Consults here have all been pretty much the same so far. If it is in fact a met or two, indeterminate at this time, chemo should be changed and see what happens. One consult offered SBRT and a different chemo plan. I am not about all that right now. Hopefully Germany has what I am looking for. If not a Rolles candidate I will most likely go with SBRT but not an added heavier chemo plan.
It's overwhelming at times with everything.
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 170 guests