PET CT

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beach sunrise
Posts: 539
Joined: Thu Mar 05, 2020 7:14 pm

PET CT

Postby beach sunrise » Tue Sep 28, 2021 1:21 pm

No evidence or reccurrance or spread. Lung nodules still there (5x3mm, other one 2.5mm) but nothing happening in 2yrs with them.
BUT, some weird language on findings makes me cautious that something is brewing in pelvic area (ex: physiologic and SUV 3.9 amenable likely due to inflammtion post surgery/correlation)
Sent results to onc and ND for their opinion.
Appts next week with thoracic and CRC surgeon to go over results in more detail.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Claudine
Posts: 562
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: PET CT

Postby Claudine » Tue Sep 28, 2021 2:21 pm

That all sounds like good news to me! They seem to think that the 3.9 SUV uptake is post surgical in nature. Hopefully you get confirmation of that from onc! My husband also has stable lung nodules, that haven't changed in a couple of years. Good luck with appointment XXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 81.1, low 3.2, now 66.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/17/2021: stable

User avatar
beach sunrise
Posts: 539
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET CT

Postby beach sunrise » Tue Sep 28, 2021 4:25 pm

Hi Claudine, it is good news. But I know I am stradling the fence still.
Appts TH and Monday and one day next week to get opinions on findings. ND going over it now and might readjust protocol based on findings. I'll post more when I know more.
Those lung nodes bother me, I fear they are granades waiting to off so my intension is try to sweet talk lung surgeon into getting them out of there and watch them under microscope.
I am happy that your hubby is still stable!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rikimaroo
Posts: 362
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: PET CT

Postby Rikimaroo » Wed Sep 29, 2021 1:41 pm

Looks good to me Beach. suv of 3.9 is nothing to be concerned about that is super low. I think when it is in the high teens its a concern. Glad to see things are on the up and up for you my friend.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

User avatar
beach sunrise
Posts: 539
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET CT

Postby beach sunrise » Wed Sep 29, 2021 9:20 pm

Good to see you pop up on here, Rikkimaroo!
Thanks for the note. Haven't had appts yet to go over details but hopefully opinions are as good as whats on paper.
How are you doing?
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 539
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET CT

Postby beach sunrise » Mon Oct 04, 2021 11:15 am

We are all stumped as to what is going on with CEA always being high.
So, new test on the market now the galleri test. We will do it and see what it says. Might be a different cancer I am dealing with now and not crc. Whatever is causing the CEA is hididng very well and has been for 2yrs.
I will update more later after results of the new test.
Good grief!!!
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rikimaroo
Posts: 362
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: PET CT

Postby Rikimaroo » Mon Oct 04, 2021 12:58 pm

CEA is frustrating, mine is 53 right now from 23. I think my Abdominal issues are playing a huge factor. As long as scans don't show anything CEA is just part of many test to come up with the right diagnosis. I am doing ok overall, just suffering from the abdominal issues. I have appt with Surgeon on Monday to go over plans. Most likely another surgery.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Claudine
Posts: 562
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: PET CT

Postby Claudine » Mon Oct 04, 2021 1:55 pm

There's another user of this forum (apologies, I keep forgetting his name/pseudonym!) who's had very high CEA values without being able to identify why (PET, CT, MRI all clean).
Interested to hear what this new test shows, beach sunrise - hopefully nothing too worrysome!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 81.1, low 3.2, now 66.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/17/2021: stable

User avatar
beach sunrise
Posts: 539
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET CT

Postby beach sunrise » Mon Oct 04, 2021 6:30 pm

Thanks Riki and Claudine!
Ya, not sold on high CEA just because. It is not normal at all. For almost 2yrs, every test under the sun (scanning and bloodwork) shows zip, nada, nothing.
Change our focus is what we all agree on and hunt somewhere else. Idk. The more I think about it the more worried I become. Just when I get everything smoothed out and routined with crc suveillance, BAM.
We also have to consider that CEA was going up then added ivermectin and CEA went down really fast. So, my thinking is a parasitic component involved as I read parasites were found in 44-50% of crc tumors tested in an independent study. Or, maybe it is just synergistic to xeloda with no real understanding/studies at this time. Had CEA checked again today, results are in and it has decreased another point. History is it doubled in 3 months time, added IVM and now it cut CEA level back to where it was for a total of a 9 point reduction. Pretty good results adding IVM to protocol.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

susanCT1
Posts: 8
Joined: Mon Sep 20, 2021 5:54 pm

Re: PET CT

Postby susanCT1 » Sun Oct 10, 2021 10:01 pm

Beach sunrise, you may want to add Signatera test into your mix of arsenals. Its a blood test which is suppose to help with detecting whether there are cancer cell in your body or not. Though this is also not 100%. If the tumor is sheding cell into blood while the blood was drawn then it will detect it, else it wont, a timing issue too. But at least you have another data point. Most people do it every 3 months thru your normal oncologist and I've just request it as well.
Wife to my DH
8/10: Dx 45 M, father of 2 boys(5 and 3), Greater Chicago region
Tumor location: left side, sigmoid colon, CEA 945
Stage 4, Colorectal Poorly differentiated Adenocarcinoma,
Mets: Lymph nodes Cervical, Chest, abdominal, pelvis

Biomarker: Tumor burden 2.1, MSS, KRAS/BRAF/NRAS wild, RAD51B, TP53, APC, ZNF217
Chemo: Folfoxiri+Avastin
9/13: 2nd CEA scan 1008

User avatar
beach sunrise
Posts: 539
Joined: Thu Mar 05, 2020 7:14 pm

Re: PET CT

Postby beach sunrise » Sun Oct 10, 2021 10:28 pm

I have taken 3 of them 4weeks apart showing zero and now going to every 3 months if the Galleri test shows nothing. I really think my thyroid has something to do with it.
And wonder if micro-mets produce cea but hide very well from scans, bloodwork, specialized test. Drives me crazy. It's like we are blindly going at this just bombing everything we can think of since there is no target.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"


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