It's dropping!!!

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Claudine
Posts: 559
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

It's dropping!!!

Postby Claudine » Wed Sep 22, 2021 7:07 pm

I can't believe this. DH's CEA is dropping - and he's been off treatment since January 2020 (going on two years!). After a steady rise from 4 to 25, 50, 75, it reached 81 three months ago (a slowing trend) and today it dropped to 66! I know it's still abnormally (very) high, but WTH??
Makes me wonder. His primary tumor was never found - thought to have involuted. Maybe he had something small again, and his immune system is destroying it?
Regardless - I'm thrilled :D
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

Gravelyguy
Posts: 367
Joined: Thu Jul 05, 2018 6:03 pm

Re: It's dropping!!!

Postby Gravelyguy » Wed Sep 22, 2021 8:26 pm

That is terrific news!!!! Praying the trend continues!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!

catstaff
Posts: 163
Joined: Wed Mar 03, 2021 11:37 am

Re: It's dropping!!!

Postby catstaff » Thu Sep 23, 2021 7:22 am

Great to hear! Maybe there was something small, or perhaps your early speculation about the bone met was correct and it hit some limitation to its growth. When will they check it again?
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Claudine
Posts: 559
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's dropping!!!

Postby Claudine » Thu Sep 23, 2021 2:41 pm

In 3 months; I was just on the phone with the onc, who doesn't have an explanation - he's seen it before (albeit rarely), cancer markers can be quite unreliable. He's thinking of ordering a PET scan for next time, in case it shows something that the CT scans are missing. But he's very happy too!
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

Rikimaroo
Posts: 361
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: It's dropping!!!

Postby Rikimaroo » Thu Sep 23, 2021 8:03 pm

What is his diet like? And that is good news!!
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: 538
Joined: Thu Mar 05, 2020 7:14 pm

Re: It's dropping!!!

Postby beach sunrise » Fri Sep 24, 2021 2:01 am

Oh Claudine, I am so happy to read this update!
The immune system is so powerful when kept optimal. 70% of immune health resides in the gut. So, whatever he is doing/eating is working.
I hope to see his CEA go lower and scan stable. Keep us posted.
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"

catstaff
Posts: 163
Joined: Wed Mar 03, 2021 11:37 am

Re: It's dropping!!!

Postby catstaff » Fri Sep 24, 2021 7:31 am

One of the "features" of cancers, _especially_ KRAS mutated, is that they actively recruit parts of the immune system (Tregs, the cells that prevent autoimmune attacks) to protect them from other parts of it. So the role of the immune system is complex and most efforts to "fix" it have so far failed. Small tumors may also disappear by outrunning their blood supply and necrotizing. Cancer cells have the ability to withstand low-oxygen environments but that only goes so far.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

Claudine
Posts: 559
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's dropping!!!

Postby Claudine » Fri Sep 24, 2021 11:21 am

If there's one thing this damn disease has taught me, is just how individual it is, and how little we know about its mechanisms, really... DH had Crohn's, which is an autoimmune disease (and may have been at the start of his cancer, we'll never know). He hasn't had an attack in about 30 years, but had a Crohn's damaged section of small intestine (which was resected 3 years ago).

In terms of diet he's not doing anything special - but he loves to cook, and we love ethnic food, so lots of currys and tagines rich in spices; he makes everything from scratch, nothing pre-processed, lots of fresh vegetables. And since he doesn't care for sweets, he doesn't eat much processed sugar either. He does love wine and drinks a lot of it, which worries me, but at least it's good wine, ha! We asked his onc about diet, and from the very start he made it clear that it wouldn't make a huge difference. I know there's lots of strong opinions on that topic, with people suggesting all kinds of diets (keto, vegetarian, etc), but I'm not sure that any single one has proven effective. As long as the diet is reasonable healthy... Food can be an important source of joy!
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

Vana3
Posts: 53
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: It's dropping!!!

Postby Vana3 » Sat Sep 25, 2021 1:19 am

That’s awesome! Glad to hear the Good news!!!
Dx 36 yr, F, 7/19
T4aN2M1 Cea 5
5 cm tumor in cecum removed, 17 + out of 45 LN
Cea 4.2
MSS, KRAS g12d, Braf WT
MT: 10.9
8/20/19 MRI & PET liver spots
9/19 - 3/20 FOLFOX
1/20 CEA 3.6,4.4, 4.6, 4.6
Liver resect 4/15/20
6/20 Ct scan clear
7/20 Cea 8.6
8/20 Cea 12.4, suspicious ovarian cyst
9/20 Hysterectomy SOB CRC
post surgery cea 2.6
11/20 clear scans
2/21 clear scans
4/21 spleen met
5/21 pet scan picks up subtle concerns in liver as well as confirms spleen
Cea 4.6
5/21 to current folfiri
Cea 10

DarknessEmbraced
Posts: 3641
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: It's dropping!!!

Postby DarknessEmbraced » Sat Sep 25, 2021 8:17 am

That's wonderful 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! :)

Sunnycd
Posts: 68
Joined: Fri Feb 26, 2021 10:36 am

Re: It's dropping!!!

Postby Sunnycd » Sun Sep 26, 2021 9:25 pm

Claudine, what wonderful news to top of my weekend!
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
MSS, RAS/RAF wild, PIK3CA mutant

stu
Posts: 1526
Joined: Sat Aug 17, 2013 5:46 pm

Re: It's dropping!!!

Postby stu » Tue Sep 28, 2021 2:00 pm

Yippee !
A good summer to reset his immune system!
He is a very unique patient your husband . Impressive stuff !
You will be so relieved to see that drop !
My mum’s CEA has always been very low but did move a point or two with progression . However twice it moved without progression and stayed that way for a few months before coming down again !
We live and learn !
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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