UPDATE: Rising CEA

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Jack&KatiesMommy
Posts: 637
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

UPDATE: Rising CEA

Postby Jack&KatiesMommy » Thu Jun 24, 2021 11:35 am

Sorry for the delay in updating. I know I always follow everyone's stories for many reasons...but mostly to be sure that they are okay and to better understand (at least antidotally) what options there are for different cancer situations.

I ended up having a PET/CT scan that showed an enlarged and "hot" lymph node near my trachea and right lung. This was the same lymph node that had lit up on PET scan two years ago and that was scheduled to be surgically removed at MSK when while on Keytruda, the lymph node shrunk and the SUV went back to normal levels. We felt that the Keytruda had obliterated any cancer growing in the lymph node so the surgery was cancelled.

But now two years later the same lymph node was growing and not responding to the Keytruda, my CEA was up to 11 and the SUV of the lymph node was 14.0. My results were sent to Dr. Kemeny at MSK and she felt that resection of this node was the best treatment.

On June 9th, Dr. Bernard Park, thoracic surgeon at MSIK, performed VATS on my right side and removed a large clump of lymph nodes near the metastatic node. I had a lot of scar tissue in the area after multiple radio frequency ablations on various lung mets through the years so the procedure was more complex than expected. Nevertheless, Dr. Park felt good about the results and feels that he got everything potentially cancerous out.

The new malignant lymph node is being tested for mutations and I am feeling pretty goo (other than some shortness of breath and diminished lung capacity (which is part of the normal healing process.)

As of my last Keytruda treatment on June 18th (8 days post resection) my CEA was down to 2.2).

Will the cancer return? I am praying it will not. My local oncologist said that he has seen instances where a localized metastasis remains local and when removed the patient continues to respond to Keytruda and never has a recurrence. I will hope for this outcome. But so far so good. Hopefully, this will help others see options that may potentially be available.

Yours always,
Cynthia (Jack & Katie's Mommy)
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Claudine
Posts: 538
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: UPDATE: Rising CEA

Postby Claudine » Thu Jun 24, 2021 11:41 am

That's great news! I always feel that it's better when things can be physically taken out. I hope you recover swiftly and can enjoy a worry-free summer :)
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: low 3.2, now 81.1
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 06/17/2021: stable

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beach sunrise
Posts: 500
Joined: Thu Mar 05, 2020 7:14 pm

Re: UPDATE: Rising CEA

Postby beach sunrise » Thu Jun 24, 2021 12:35 pm

Great news! I am very happy for you.
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"

Siti
Posts: 224
Joined: Thu Aug 01, 2019 10:58 am

Re: UPDATE: Rising CEA

Postby Siti » Thu Jun 24, 2021 5:14 pm

Thank you for the update Cynthia. Great news and I hope that there will never be any recurrence!
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

debb
Posts: 190
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: UPDATE: Rising CEA

Postby debb » Mon Jun 28, 2021 12:12 pm

Great news!!!
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin
3/20 8 treatments of folfiri & avastin
12/20 folfiri & avastin

Punky44
Posts: 484
Joined: Mon Oct 01, 2018 4:29 pm

Re: UPDATE: Rising CEA

Postby Punky44 » Mon Jun 28, 2021 12:26 pm

Great news!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1
Latest update: 6/28/21: Clear CT with CEA 3.1 (attributed to emphysema)

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

DarknessEmbraced
Posts: 3607
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: UPDATE: Rising CEA

Postby DarknessEmbraced » Sat Jul 03, 2021 9:34 am

Great news!
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! :)

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Jack&KatiesMommy
Posts: 637
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: UPDATE: Rising CEA

Postby Jack&KatiesMommy » Thu Jul 15, 2021 1:48 pm

Most recent blood draw at Keytruda infusion: CEA .9. So far so good.
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

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GrouseMan
Posts: 865
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: UPDATE: Rising CEA

Postby GrouseMan » Fri Jul 16, 2021 12:18 pm

Congratulations on the recovery and continued response to Keytruda. This brings to mind some research I've read in the last month or so concerning turning tumors that are infiltrated with immune cells and resistant to them had high activity of the gene monoamine oxidase A. This is the gene that produces a protein that is the target of MAOI drugs. They found that if they could block this, tumors became more susceptible to the infiltrated Immune system T-cells. So apparently MAO-A is another immune checkpoint. Nice thing about all this is that MAO-A is the target of old Anti-Depressants that have been on the market since the 50's and have been supplanted by newer anti-depressants. But the old ones are still around. They found by treating Mice with MAOI's such as phenelzine, clorgyline, or Mocolobemide the tumors grew more slowly. When mice were treated with prochloroperazine and a PD-L1 checkpoint inhibitor, it outperformed either therapy alone at shrinking tumors! So we might see oncologists prescribing old anti-depressants w PL1 checkpoint inhibitors in the future. These mouse studies where performed on Colon, and Melanoma tumors in Mice. UCLA is doing a clinical trial using phenelzine in prostate cancer patients and have reported that they saw PSA levels drop in 11 out of 20 participants.

YMMV. Good luck

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

User avatar
Jack&KatiesMommy
Posts: 637
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: UPDATE: Rising CEA

Postby Jack&KatiesMommy » Fri Jul 16, 2021 1:18 pm

Congratulations on the recovery and continued response to Keytruda. This brings to mind some research I've read in the last month or so concerning turning tumors that are infiltrated with immune cells and resistant to them had high activity of the gene monoamine oxidase A. This is the gene that produces a protein that is the target of MAOI drugs. They found that if they could block this, tumors became more susceptible to the infiltrated Immune system T-cells. So apparently MAO-A is another immune checkpoint. Nice thing about all this is that MAO-A is the target of old Anti-Depressants that have been on the market since the 50's and have been supplanted by newer anti-depressants. But the old ones are still around. They found by treating Mice with MAOI's such as phenelzine, clorgyline, or Mocolobemide the tumors grew more slowly. When mice were treated with prochloroperazine and a PD-L1 checkpoint inhibitor, it outperformed either therapy alone at shrinking tumors! So we might see oncologists prescribing old anti-depressants w PL1 checkpoint inhibitors in the future. These mouse studies where performed on Colon, and Melanoma tumors in Mice. UCLA is doing a clinical trial using phenelzine in prostate cancer patients and have reported that they saw PSA levels drop in 11 out of 20 participants.


This is really interesting, Grouseman!
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

mymom
Posts: 1293
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: UPDATE: Rising CEA

Postby mymom » Sat Jul 17, 2021 5:22 pm

I’m glad it went well.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED


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