New to forum - CEA trending up while on adjuvant chemo

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Expat
Posts: 7
Joined: Mon May 07, 2018 7:43 pm

New to forum - CEA trending up while on adjuvant chemo

Postby Expat » Tue May 08, 2018 11:24 am

Hello everyone! I am new to the forum and relatively new to this journey. Here is some background on my situation: in August 2017, I went for my first colonoscopy; doctors found a 1.5 cm semi-peduncolated polyp in my sigmoid and a 0.4 cm sessile polyp in my caecum. The polyp in the sigmoid was positive for cancer. A CT scan and an MRI revealed a solitary metastasis in my liver (approx. 2.2 x 1.7 cm). While the met was resectable upfront, the oncologist recommended three neoadjuvant rounds of CapeOx to learn more about tumor biology; the liver met shrunk to 0.7 cm. Scans of my colon had been inconclusive from the get-go, so there was no change there. On 1/5, colon and liver were successfully resected; there was no cancer in my colon--only a scar; 2/19 nodes came out positive for cancer. On 3/5, exactly two months after surgery, I went back on CapeOx (same dosage as before) to mop up any residual disease.

At some point after the first round of adjuvant CapeOx, my CEA levels jumped. I am aware that CEA levels can rise during chemo, but to the best of my knowledge these rises tend to be small. In my case, CEA levels have been effectively doubling every 4 weeks. On 5/3, at the beginning of my first post-op chemo, they were <.5 (undetectable); on 4/16, at the beginning of my third one, they were 1; less than 3 weeks later, on 5/4, they were 1.9. My onc reminds me that these levels are still within the norm, but I am worried. While my cancer does not express a lot of CEA, this marker appears to be a fairly reliable indicator in my case. It was 4.3 at diagnosis; at the beginning of the second pre-op chemo, it was 1.6; at the beginning of the third one, it was 0.6; after surgery, it was >0.5 (undetectable).

Is there anyone here on the forum who has had a similar experience, with CEA levels exponentially rising during adjuvant chemo? Any suggestions as to what I might/should do at this point? I wonder if going for additional testing or an MRI would be a good idea. My onc seems to believe that the MRI would not reveal anything at this point, and that we would be better served by moving up my next CT scan from July (as originally planned) to June (as soon as I am done with the last round of CapeOx).
First colonoscopy 8/2017; 1.5 polyp in sigmoid positive for adenocarcinoma
Diagnosed 9/2017 @age 52, CC IV, solitary liver met (2.2x1.7 cm); MSS; no Lynch
CapeOx 9/2017-11/2017
Colon & liver resection; prophylactic hysterectomy
CapeOx 3/2017-ongoing

SoConfused
Posts: 1024
Joined: Mon Jan 30, 2012 2:40 pm

Re: New to forum - CEA trending up while on adjuvant chemo

Postby SoConfused » Wed May 09, 2018 12:20 am

CEA spikes during chemo treatments are normal and may be caused by tumor death and/or inflammatory process in the body.
Stage IV CC

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: New to forum - CEA trending up while on adjuvant chemo

Postby stu » Wed May 09, 2018 2:10 am

Hi ,
My mum’s CEA was around 7 at diagnosis with a significant spread . Every time she had chemo it went up to 11 . The highest it ever gets to . It was nothing short of anxiety provoking. However her scans showed the exact opposite and were find . The second year she had chemo , up they shot again . We ignored them . Like you my mum responds very well to chemo but this was an aspect we just had to learn to live with . Her oncologist just advised us to focus on the scan evidence during chemo and pay more attention to them when she was off chemo .
Hope it helps ,
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 .

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

Re: New to forum - CEA trending up while on adjuvant chemo

Postby NHMike » Wed May 09, 2018 7:04 am

Check out the levels in my signature. They have been rising but finally leveled off at 2.8. Normal range is up to 3.8. I have my sixth cycle of Oxaliplatin this morning.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: New to forum - CEA trending up while on adjuvant chemo

Postby rp1954 » Wed May 09, 2018 7:57 am

Your low pre- and post surgerical CEA, and lack of CEA rise or detection for two months after, should be somewhat reassuring. Pre-op, you did have a good solid CEA response, and hopefully a curative surgery.

The cumulative toxicity of capacitabine and oxaliplaten on cells and organs is common and typically sends many blood tests wild and wilder toward the end of cyclical heavy chemo. In fact, the real decision for many is when they should, or have to, discontinue oxi or even heavy chemo entirely. Then the blood tests will peak at different times and drift down on separate curves over the following year. It would be rises from these declines that cause more concern, and even then some false alarms.

I do have to snort a little bit over the statement that he wanted "to learn more about tumor biology" and presumably did not take a CA199 level before neoadjvant chemo, and perhaps another CA199 reading between surgery and regular chemo. Chemo tends to mangle KRAS testing and CA199 might be your only (imperfect) clue in that vein.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

Re: New to forum - CEA trending up while on adjuvant chemo

Postby NHMike » Wed May 09, 2018 8:24 am

The Genomic tumor testing should precede chemo
as they take a biopsy to do the testing and that’s before treatment because they don’t have a diagnosis yet.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

User avatar
mobrouser
Posts: 111
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: New to forum - CEA trending up while on adjuvant chemo

Postby mobrouser » Thu May 10, 2018 8:33 pm

I started at 2.4 pre chemo which puts me toward the high end of normal.
They continued trending upwards with each infusion. It was at 6.3 or 6.8 (I can't remember now) prior to my 6th infusion.
Oxaliplatin was reduced from 90% down to 75% for the 6th and 7th due to platelet and neutrophil issues. My reading on Tuesday prior to 7th
infusion was 4.6.
My oncologist told me not to put too much weight on the levels, but wait to the end of chemo for scan results. She also said that
in Ontario, the government health plan will only pay for CEA tests every 4 weeks, however I am now being tested prior to each infusion.
Not sure who is footing the bill for them?
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

kandj
Posts: 213
Joined: Sun Sep 27, 2015 11:29 am

Re: New to forum - CEA trending up while on adjuvant chemo

Postby kandj » Fri May 11, 2018 9:43 am

DH had a CEA of <.5 when diagnosed and he was riddled with cancer. It got as high as 10 during chemo (both systemic and via an HAI pump). It did trend up a little (still WNL) during his reoccurrence. Right now it is up a little, but I think that is due to inflammation due to a bacterial infection he had.
wife to DH, dx 8/15 stage IV @36
Told unresectable liver Mets
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
46 rounds of chemo 8/15-5/18

Expat
Posts: 7
Joined: Mon May 07, 2018 7:43 pm

Re: New to forum - CEA trending up while on adjuvant chemo

Postby Expat » Fri May 11, 2018 6:01 pm

SoConfused wrote:CEA spikes during chemo treatments are normal and may be caused by tumor death and/or inflammatory process in the body.


Hello SoConfused, and thank you very much for your reply. I hope you are right! I have another round of chemo coming up; hopefully my CEA levels will stop climbing so quickly, and I will be able to chill, at least for a little while...
First colonoscopy 8/2017; 1.5 polyp in sigmoid positive for adenocarcinoma
Diagnosed 9/2017 @age 52, CC IV, solitary liver met (2.2x1.7 cm); MSS; no Lynch
CapeOx 9/2017-11/2017
Colon & liver resection; prophylactic hysterectomy
CapeOx 3/2017-ongoing

Expat
Posts: 7
Joined: Mon May 07, 2018 7:43 pm

Re: New to forum - CEA trending up while on adjuvant chemo

Postby Expat » Fri May 11, 2018 6:09 pm

stu wrote:Hi ,
My mum’s CEA was around 7 at diagnosis with a significant spread . Every time she had chemo it went up to 11 . The highest it ever gets to . It was nothing short of anxiety provoking. However her scans showed the exact opposite and were find . The second year she had chemo , up they shot again . We ignored them . Like you my mum responds very well to chemo but this was an aspect we just had to learn to live with . Her oncologist just advised us to focus on the scan evidence during chemo and pay more attention to them when she was off chemo .
Hope it helps ,
Stu


Hello Stu, and thank you so much for sharing your (and your mum's) experience. Your message gave me hope and much encouragement, and I am very grateful for it. My warmest wishes to both you and your mum (who sounds like an *amazing* person, by the way!)
First colonoscopy 8/2017; 1.5 polyp in sigmoid positive for adenocarcinoma
Diagnosed 9/2017 @age 52, CC IV, solitary liver met (2.2x1.7 cm); MSS; no Lynch
CapeOx 9/2017-11/2017
Colon & liver resection; prophylactic hysterectomy
CapeOx 3/2017-ongoing

Expat
Posts: 7
Joined: Mon May 07, 2018 7:43 pm

Re: New to forum - CEA trending up while on adjuvant chemo

Postby Expat » Fri May 11, 2018 6:21 pm

NHMike wrote:Check out the levels in my signature. They have been rising but finally leveled off at 2.8. Normal range is up to 3.8. I have my sixth cycle of Oxaliplatin this morning.


I am so glad to see that your CEA has leveled off, NHMike! And since you've just had your sixth Oxaliplatin infusion, I assume you must be close to the end of your CapeOx treatment. Here's wishing you all the best for the rest of your journey; may the road ahead be smooth and full of light.
First colonoscopy 8/2017; 1.5 polyp in sigmoid positive for adenocarcinoma
Diagnosed 9/2017 @age 52, CC IV, solitary liver met (2.2x1.7 cm); MSS; no Lynch
CapeOx 9/2017-11/2017
Colon & liver resection; prophylactic hysterectomy
CapeOx 3/2017-ongoing

Expat
Posts: 7
Joined: Mon May 07, 2018 7:43 pm

Re: New to forum - CEA trending up while on adjuvant chemo

Postby Expat » Tue May 15, 2018 7:35 pm

rp1954 wrote:Your low pre- and post surgerical CEA, and lack of CEA rise or detection for two months after, should be somewhat reassuring. Pre-op, you did have a good solid CEA response, and hopefully a curative surgery.

The cumulative toxicity of capacitabine and oxaliplaten on cells and organs is common and typically sends many blood tests wild and wilder toward the end of cyclical heavy chemo. In fact, the real decision for many is when they should, or have to, discontinue oxi or even heavy chemo entirely. Then the blood tests will peak at different times and drift down on separate curves over the following year. It would be rises from these declines that cause more concern, and even then some false alarms.

I do have to snort a little bit over the statement that he wanted "to learn more about tumor biology" and presumably did not take a CA199 level before neoadjvant chemo, and perhaps another CA199 reading between surgery and regular chemo. Chemo tends to mangle KRAS testing and CA199 might be your only (imperfect) clue in that vein.


Thank you for your informative reply, rp1954! My oncologist halved the Oxaliplatin after the first post-op infusion (fatigue, extreme cold sensitivity, muscular cramps, etc.). He also cut down on the Capecitabine after the third post-op cycle (neuropathy). The tweaks have helped tremendously with the side effects (these days I feel almost "normal"--at least most of the time) so I should be able to complete my 8 rounds of CapeOx as planned.

As for learning about tumor biology, I am afraid I haven't been the most effective advocate for myself. I asked about my CA19-9 level when I was first diagnosed, but was told that it is not normally tested, and I did not think about insisting (in all fairness, I made the mistake of asking my surgeon rather than my oncologist--had I asked my oncologist, I might have gotten a different answer). I gather that testing CA19-levels at this point (after 7 rounds of chemo) would be pretty useless. Do you think that it might still be advisable to ask for KRAS/BRAF mutation testing? Part of me would love nothing more than to remain blissful ignorant about this disease, but I do realize that ignorance is not really an option, especially at my stage.
First colonoscopy 8/2017; 1.5 polyp in sigmoid positive for adenocarcinoma
Diagnosed 9/2017 @age 52, CC IV, solitary liver met (2.2x1.7 cm); MSS; no Lynch
CapeOx 9/2017-11/2017
Colon & liver resection; prophylactic hysterectomy
CapeOx 3/2017-ongoing

Expat
Posts: 7
Joined: Mon May 07, 2018 7:43 pm

Re: New to forum - CEA trending up while on adjuvant chemo

Postby Expat » Tue May 15, 2018 8:05 pm

mobrouser wrote:I started at 2.4 pre chemo which puts me toward the high end of normal.
They continued trending upwards with each infusion. It was at 6.3 or 6.8 (I can't remember now) prior to my 6th infusion.
Oxaliplatin was reduced from 90% down to 75% for the 6th and 7th due to platelet and neutrophil issues. My reading on Tuesday prior to 7th
infusion was 4.6.
My oncologist told me not to put too much weight on the levels, but wait to the end of chemo for scan results. She also said that
in Ontario, the government health plan will only pay for CEA tests every 4 weeks, however I am now being tested prior to each infusion.
Not sure who is footing the bill for them?


Thank you for your reply, mobrouser. It's great to hear that your CEA levels are going down! Oxaliplatin was reduced from 100% to 50% back in March (after the first post-op infusion and before my CEA levels started going up) but recently my Capecitabine was reduced from 2600 mg to 2000 mg a day. Perhaps this tweak will do the trick, and at the next test (which I assume will be in late May) my CEA will have gone down, at least a little.

My oncologist too mentioned that CEA should only be tested every 4 weeks or so, but I found that while on chemo this schedule isn't really feasible. It's either testing every 3 weeks or testing every 6 weeks. And the last time we let 6 weeks go before doing another test, my CEA started going up!
First colonoscopy 8/2017; 1.5 polyp in sigmoid positive for adenocarcinoma
Diagnosed 9/2017 @age 52, CC IV, solitary liver met (2.2x1.7 cm); MSS; no Lynch
CapeOx 9/2017-11/2017
Colon & liver resection; prophylactic hysterectomy
CapeOx 3/2017-ongoing

Expat
Posts: 7
Joined: Mon May 07, 2018 7:43 pm

Re: New to forum - CEA trending up while on adjuvant chemo

Postby Expat » Tue May 15, 2018 9:05 pm

kandj wrote:DH had a CEA of <.5 when diagnosed and he was riddled with cancer. It got as high as 10 during chemo (both systemic and via an HAI pump). It did trend up a little (still WNL) during his reoccurrence. Right now it is up a little, but I think that is due to inflammation due to a bacterial infection he had.


Thank you for sharing your experience, kandj! I too have heard that CEA often rises in response to inflammation; hopefully that's exactly what's going on with your husband at the moment. My warmest wishes to you both.
First colonoscopy 8/2017; 1.5 polyp in sigmoid positive for adenocarcinoma
Diagnosed 9/2017 @age 52, CC IV, solitary liver met (2.2x1.7 cm); MSS; no Lynch
CapeOx 9/2017-11/2017
Colon & liver resection; prophylactic hysterectomy
CapeOx 3/2017-ongoing

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: New to forum - CEA trending up while on adjuvant chemo

Postby rp1954 » Wed May 16, 2018 3:44 am

Expat wrote: I asked about my CA19-9 level when I was first diagnosed, but was told that it is not normally tested...

Correct, but a potentially costly omission for the many patients that would respond to added cimetidine, maybe IV vitamin C and/or MK4(a vit K2), or show a drug response in CA199 data earlier or separately from CEA (like my wife).

(in all fairness, I made the mistake of asking my surgeon rather than my oncologist--had I asked my oncologist, I might have gotten a different answer).

In our experience, it was the surgeon who said yes. As for oncologists' "permission", we were already ordering it ourselves and had other subjects to cover or debate.

I gather that testing CA19-levels at this point (after 7 rounds of chemo) would be pretty useless.

Actually you could have any remaining fixed tissue stained with CA199, for perhaps $120-$400 depending on where you are an expat, if you can get a dr and/or path lab to play ball. Cancer tissue stained with CA199 (and CSLEX1) is the primary data reference, serum tests have more interference and interpretative features. CA199 in the cell membranes appears to be more robust to chemo than (Kras mut) DNA. Also, CA199 staining is low volume and probably should be batched with some pancreatic cancer or gastric patients' stains, since individual staining is less common now.

For you, the serum CA199 test's value right now is reduced. However, if CA199 were still ultralow, between 0-2 (considered a 7%-10% chance), that would answer some basic questions, essentially definitively. Higher values meant I would get the CA199 tissue test done. Playing catchup, is an imperfect art as to any test series' timing.

Do you think that it might still be advisable to ask for KRAS/BRAF mutation testing? Part of me would love nothing more than to remain blissful ignorant about this disease, but I do realize that ignorance is not really an option, especially at my stage.

I would carefully track the times between chemo and surgery, sample quantity and quality, and perhaps get several separate opinions (oncologist, pathologist). Right now, in standard clinical medicine, Kras/Braf mutations are used to exclude Erbitux/Vectibex treatments. In complementary, alternative, experimental medicine Kras mutations may be an indicator for IV vitamin C as an additive adjunct. (scientific papers unequivocally link inhibitory treatments of cancer cells with Kras mutations to (IV) vitamin C)
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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