CEA nearly double!

Please feel free to read, share your thoughts, your stories and connect with others!
skimom
Posts: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

CEA nearly double!

Postby skimom » Wed Nov 08, 2023 4:27 pm

I am doing my best to stay calm.. not sure what to do. Just got my CEA test back from this morning and it is up to 32 from the 18 it was 4 weeks ago. The only other times it has risen there have been reasons to expect it (delay in treatment, surgery) I started supplements from ND and IVC about a month ago and antiparasitic drugs last week. It just doesn’t make sense to me. Are they causing this rise? Not that any of you could know for sure but does anyone have any experience, advice or thoughts of why this is happening? I’m on my 3rd round of Folfox (2nd time on it) I did 6 rounds Folfiri before this and switched back to Folfox due to new lung nodules

Thanks and praying for everyone here on your journey back to healthy

~Sara~
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: 206
Joined: Fri Sep 11, 2020 12:04 pm

Re: CEA nearly double!

Postby utahgal7 » Wed Nov 08, 2023 4:59 pm

Hi Sara,

Oh no, I am sorry to hear about the CEA rise. What does your ND/doctor say about the CEA rise? Reach out to beachsunrise and see what her thoughts are about it. Maybe prayingforccr or rp1954 could provide some advice as well. CEA spikes can be caused by so many things. Chemo causes inflammation and that can cause CEA to spike. I have known several patients that had their CEA spike while on FOLFOX and they were not taking any supplements. So don't panic yet. Obviously, I would follow your ND and doctor's advice. However maybe this is an isolated CEA spike. I know it's hard, but try not to worry.

I will pray for you.

Paige
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; 1.4
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
4/24 left brain craniotomy (RC met)

skimom
Posts: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: CEA nearly double!

Postby skimom » Wed Nov 08, 2023 10:06 pm

Thank you both for the words of wisdom.. Paige - I will not worry as it does no good ever. Will be positive and wait for scans in 2 weeks. Prayingforccr - Thank you for the thought of it being shedding. I like that! Going to plan as though that is what is happening, stick to the plan and see what happens. Of course all of this is with the backdrop that I stay mentally prepared for a setback because that is how I’m built. Remain positive always with a backup plan or at least the starting process of one.

Thanks again guys - gonna rest easy tonight and keep living my best life!

Blessings to you

~Sara~
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

rp1954
Posts: 1863
Joined: Mon Jun 13, 2011 1:13 am

Re: CEA nearly double!

Postby rp1954 » Thu Nov 09, 2023 9:29 am

From my perspective, it is hard to tell where you're at because lack of posted blood work - from chemo effectiveness (e.g. combined CEA, CA199, ALP, LDH) and chemo damage (e.g. CBC, 5-8 liver panels) to parts of basic metastatic biology (e.g. CA199 when not an interference, usually inflammations[e.g. hsCRP, ESR] ).

You appear to be on the usual cyclical chemo path of bottoming out CEA and chemo/body exhaustion, CEA climb, loss or reduction of chemo, growth/spread. Short of a miracle new treatment/chemistry, the only way I know to break the cycles is to stop metastatic behavior, restore chemo sensitivity, and remove the worst cancer sites. Easier said than done in the std oncology world, but necessary.

Our approach was:
1. continuous ever more aggressive (immuno) chemo to stop spread and as much growth as possible, while maintaining good CBC and liver panels.
2. good blood work, which is now easier with xeloda based (vs UFT-LV) with ADAPT+++/++++ vs the usual continued degradation of blood panels by repeated std chemo.
3. removal of at least the worst parts ("std" mostly wants one and done curative surgery, this is not necessary with continuous immunochemo). Removal of the worst cancer sites often restores a lot of chemo sensitivity. Getting good partial surgery(s) over the usual "it's futile" objections is a big deal; ablations are more limited but can be useful.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

skimom
Posts: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: CEA nearly double!

Postby skimom » Thu Nov 09, 2023 10:12 am

Thank you rp1954!
I don’t have the liver labs you reference so will post the ones I do have.And I only have CEA not a combined one. Are these different tests I should be asking for? CA19-9 hasn’t been a marker for me so they haven’t tested it for a while. Below is what I do have, not sure if it helps shed any light on my situation

I also have a HAI pump so get FUDR every 4 weeks. I had it last cycle so most recent labs are with it. I think it makes a difference in my liver labs. Every other of 2 of them are higher. The hope with the HAI is to shrink liver tumors enough to surgically remove. Praying that it is still an option after the new lung nodules. Surgeon believes they are a result of the surgery to implant the pump so didn’t sound too excited about performing another surgery at least not in the near future. We will see what the scans show in 2 weeks

CBC from yesterday is:
White blood cells 3.64
Red blood cells 3.18 low
Hemoglobin 10.6 low
Hematocrit 31.8 low
MCV 100
MCH 33.3
RDW SD 67.7 High
Platelets 90 Low
Neutrophil 1.90
Lymphocyte .74 low
Monocyte 0.90
EOS .07
BASÓ .02
IG .01

Liver last 5 starting with most recent
ALK 181, 164, 154, 186, 198
AST 65, 60, 77, 45, 56
ALT 115, 123, 150, 72, 134

Thank you so much for looking at it, I admire you, your knowledge and willingness to help others with it is amazing!!
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

User avatar
beach sunrise
Posts: 1062
Joined: Thu Mar 05, 2020 7:14 pm

Re: CEA nearly double!

Postby beach sunrise » Thu Nov 09, 2023 8:27 pm

Hi skimom, that is a jump for sure.
What are your targets: VEGF, PGE2, IL-s, CDs, ect?
What are your supplements and doses for them.
Can you list your pathways and supplement list for us?
Another thing is your bloodwork should be expanded and I would def ask for that to get a better oveall picture or underlies targets.
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: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: CEA nearly double!

Postby skimom » Thu Nov 09, 2023 9:08 pm

beach sunrise wrote:Hi skimom, that is a jump for sure.
What are your targets: VEGF, PGE2, IL-s, CDs, ect?

I’m sorry I don’t know what this means

I also don’t know what you mean by pathways

Here is supplement list:
All from Natura
Botanical Treasures 2 caps 3xday
ImmuCare 2 caps 2xday
Mushroom Synergy 2 caps 3xday
InflamAway 2 caps 3xday
Cell Guardian 3 caps 1xday
Vitamin D+A+K 10,000 IU a day
PhytoCyto 1/2 teaspoon 3xday every other week
Artemis Plus 2 caps 3xday every other week
Iron Synergy 2 caps a day
I also take 12mg ivermectin every 3 days and Albendazole 200mg 4 days on 3 days off
IV Vitamin C 100G once a week (not within 2 days before or after chemo per Onc)

ND said no supplements day before, day of, day after chemo treatment

I will ask for expanded bloodwork, do you have a recommendation of what to ask for?

Thank you so much for all of your help! Truly amazing
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

CoolHandLuke8723
Posts: 109
Joined: Fri Aug 11, 2023 1:10 am
Facebook Username: CoolHandLukeNone

Re: CEA nearly double!

Postby CoolHandLuke8723 » Fri Nov 10, 2023 1:04 am

You've made incredible progress in getting your CEA score to drop -from over 5000 initially? What you've been doing seems to have been working well. Only suggestion I would make is to add unflavored IP-6 plus inositol to your daily list and mix 8 grams morning and night into a glass of water with a frother - looks like milk when I drink it. Just got my CEA score yesterday - initial CEA was around 15 and after chemo, IVM and daily IP-6 am down to 5.0 - which is normal range if you are a smoker. As I am not a smoker, am hoping that another chemo treatment plus IP-6 will get me down to 2.5 CEA in two weeks. Best of luck - you have improved your CEA score drastically - maybe try IP-6 powder from Amazon and see if that works for you too?

skimom
Posts: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: CEA nearly double!

Postby skimom » Fri Nov 10, 2023 9:49 pm

CoolHandLuke8723 wrote:You've made incredible progress in getting your CEA score to drop -from over 5000 initially? What you've been doing seems to have been working well


Yes this is true! I know it is huge progress but the reason I’m concerned is because when it was heading lower all tumors were shrinking. On my last scan I had 20+ new lung nodules so I’m a bit concerned about them not shrinking since CEA is rising but taking into account what prayingforccr said about shedding cells and hoping for the best when I get scans in 2 weeks.

Thanks for the suggestion on IP-6 I will ask my ND about it on Monday.
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

User avatar
beach sunrise
Posts: 1062
Joined: Thu Mar 05, 2020 7:14 pm

Re: CEA nearly double!

Postby beach sunrise » Sat Nov 11, 2023 1:34 am

MCV: very good
WBC: Astragulus and skull cap
RBCs: b complex, b12 and liverwurst should help
RDW: Could be chemo related
Liver Markers: Siliphos,bladderwrack and hepagenesis might help
Research SIRT6; it is for DNA repair, tumor suppression. Red and black berries (I use all kinds of berry powders without the sugar)
JMO: 12mg IVM every three days is a discussion with ND for more details as to why such a low dose and its half life is only around 12hrs +/-
Inflammation causes cancer and cancer causes inflammation thru vasculation of new vessels. You have some anti-inflammatories in your protocol but maybe have a discussion about adding celebrex as well if it doesn't interfere with the pump as with everything I've mentioned.
There are a few other things I will write later. My foot is asleep and my finger is broken, darn it.
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: CEA nearly double!

Postby DarknessEmbraced » Sat Nov 11, 2023 8:05 am

I'm sorry your CEA is rising. *hugs* It can rise for other reasons such as inflammation. I hope that's the case with you. I would talk to your doctor.
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! :)

skimom
Posts: 80
Joined: Fri Mar 17, 2023 12:24 pm
Location: Oregon USA

Re: CEA nearly double!

Postby skimom » Tue Nov 14, 2023 12:41 pm

beach sunrise wrote:MCV: very good
WBC: Astragulus and skull cap
RBCs: b complex, b12 and liverwurst should help
RDW: Could be chemo related
Liver Markers: Siliphos,bladderwrack and hepagenesis might help
Research SIRT6; it is for DNA repair, tumor suppression. Red and black berries (I use all kinds of berry powders without the sugar)
JMO: 12mg IVM every three days is a discussion with ND for more details as to why such a low dose and its half life is only around 12hrs +/-
Inflammation causes cancer and cancer causes inflammation thru vasculation of new vessels. You have some anti-inflammatories in your protocol but maybe have a discussion about adding celebrex as well if it doesn't interfere with the pump as with everything I've mentioned.
There are a few other things I will write later. My foot is asleep and my finger is broken, darn it.


Thanks for the tips! I do eat berries every day but will add a powder to my protein shake as well.

I’ll talk with ND about the dose of IVM and about adding celebrex. I know on the bloodwork he had me do that my inflammation markers were low and I’m not swollen but I’ll still ask. Thanks again!!

Sorry about your finger! What a bummer :/
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

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

Re: CEA nearly double!

Postby Bpaint » Tue Nov 14, 2023 9:36 pm

I would guess your CEA jump is from the new lung nodules. But it doesn’t necessarily mean the folfox won’t work to knock them down again. My husband’s cancer also makes a lot of CEA and his has always shot up with any progression, but also each time he changes treatment. Usually it takes 2 months on a new treatment for his CEA to drop back down again.
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: 1062
Joined: Thu Mar 05, 2020 7:14 pm

Re: CEA nearly double!

Postby beach sunrise » Fri Nov 17, 2023 12:24 am

Yes m'am, I've have a good talk with ND about all your concerns and discuss if anything should be tweeked or not at this point.
Let us know what yall come up with.
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 81 guests