CEA going up
By way of background, I had colon resection in mid May revealing IIIB colon cancer. (colonoscopy in August, 2008 cleared several polyps, and this cancer came on quickly and metastasized in short order.) I began oxaliplatin and capecitabine in early June. CT's chest and abdomen were negative.
My CEA following colonoscopy (before surgery) was 7.5. After surgery and tumor removal, it was 4.1. Since onset of chemotherapy, the CEA has steadily gone from four to 12 in a linear fashion. This link is to the graph on my CSN page: Rising CEA's
I had a PET scan (1st one) two days ago which was normal. I have had no genetic testing except for the MSI which I requested and said I would pay for if it wasn't covered. Obviously much history omitted. In short though, I am not feeling my concerns are being addressed. I know the CEA is not the cornerstone of crc treatment. But it's the CEA going up that has me worried.
In summary my two problems are the significance of the CEA and where to go for 2nd opinion. I live in western Oregon, and anywhere from Seattle to San Diego or Arizona (Mayo?) is fine with me. Or elsewhere. I'm just starting my search, and for all I know, the best center is 30 miles away.
(for what it's worth, I've been around the sun 65 times.)
Norm
Comments
-
Me too
My CEA also going up on chemo. Initially it went down after liver resection in June. Was up slightly in July. Started chemo in August. Last week found out my CEA had doubled since July despite first three rounds of chemo.
This is my first time on chemo...is there any way to read this other than bad news? It is sure making me feel hopeless to know despite all this miserable chemo that my CEA rising only three months since liver resection. Last time my CEA rose like this they discovered the mets in my liver.
K10 -
My CEA is going up too.k1 said:Me too
My CEA also going up on chemo. Initially it went down after liver resection in June. Was up slightly in July. Started chemo in August. Last week found out my CEA had doubled since July despite first three rounds of chemo.
This is my first time on chemo...is there any way to read this other than bad news? It is sure making me feel hopeless to know despite all this miserable chemo that my CEA rising only three months since liver resection. Last time my CEA rose like this they discovered the mets in my liver.
K1
My CEA is going up too. It's 6.5. Scans will be done this week. I love my ONC. Dr Haseeb in Fresno, Cancer Center but I'm sure San Francisco has to have good ones. Lisa32 sees someone in the San Diego area that she likes. Keep on pressing!0 -
My CEA is going up too.k1 said:Me too
My CEA also going up on chemo. Initially it went down after liver resection in June. Was up slightly in July. Started chemo in August. Last week found out my CEA had doubled since July despite first three rounds of chemo.
This is my first time on chemo...is there any way to read this other than bad news? It is sure making me feel hopeless to know despite all this miserable chemo that my CEA rising only three months since liver resection. Last time my CEA rose like this they discovered the mets in my liver.
K1
My CEA is going up too. It's 6.5. Scans will be done this week. I love my ONC. Dr Haseeb in Fresno, Cancer Center but I'm sure San Francisco has to have good ones. Lisa32 sees someone in the San Diego area that she likes. Keep on pressing!0 -
hunting wild game
Sorry to hear about the CEA rise. That's when we started tight spacing extra tests, and extra chemistry.
The obvious question is, "is this a false alarm?", and that may play out over 3-5 months (per jscho's linked papers on CEA elevations) even with extra data. In our case, it was not a false alarm and CA19-9 started to go exponential while CEA stair stepped (increased immunochemo, CA19-9 dropped back 2/3rds, CEA stopped climbing), and family did a dozen+ interviews - radiologists, surgeons, rad / med oncs in order to move harder toward the cure zone than SOP (finally cut out para aortic lymph nodes in a hard won 2nd surgery while on cimetidine and immunochemo).
Many times we haven't been satisfied with standard, cost controlled answers. The things that I reproach myself for, I've been lulled by others' pat answers and my own wait-in-line reflex.
-----
We initially scouted for the most abnormal biomarkers reasonably related to CRC with a salvo of ten or so adenocarcinoma biomarkers. Early on we've inhibited VEGF, EGFR, HIF-1a, COX2, and likely HedgeHog, maybe HER2 to combat further metastatic spread of new microscopic clusters; raised or tried to maintain WBC (6 to 9); as well as applying basic UFT (5FU) - LV continuously for anti-angiogenesis.
We've been tracking CA19-9, MCV and ESR as well as CEA on 3-5 week spacings (shopped hard for a good price). 7-14 day repeats if any questions arise. If anything remains hidden after CT and PET, then MRI with a 3T magnet seems next, in so kind of time spaced exam strategy. We never let insurance or re-imbursements dictate the program.
If the mets won't take a hint and wither on immunochemo, we are going to find the met, find a surgeon, an interventional radiologist (RFA), or maybe a SBRT to remove them. Hell or high water, all while maintaining immunochemo.
------
Oh, yes. I had to arrange an independent reading on a "clear CT" to find the source of the CEA problem for the second surgery - first radiologist clean missed it.0 -
To Consider....
Norm,
In looking at this, having your PET come back clear is a good sign in and of itself. With nothing lighting up out of the ordinary, this is a good sign.
During chemo treatments, it is not uncommon to see a fluctuation or rise in CEAs. Sometimes, this can mean that the treatments are killing off those cancer cells, which emit a protein into the blood upon their demise, which will make the CEA level rise. This is not uncommon or abnormal. It does happen.
7.5 before surgery was not abnormally high, just a couple of points out of a smoker's CEA range. Going to 4.1 after surgery was good and put you back in good condition. I've included CEA references for you below:
smoke range 3-5
non-smoker 0-3
The fact that you are sitting on 12 could be that the level is up to the death of cancer cells, as I stated above. Combined with a good PET, it does not sound alarming, although I know a rise always gets everyone's attention. It's ok to be concerned and you can use this as sort of a baseline for your next test.
If levels were to continue to rise steadily or exponentially from there, there might be something to look at.
I'm sure your onc would confirm this data after you speak with him. It's good to be cautious but don't jump the gun just yet. Levels do rise with chemo and can go the other way as well.
I had CEAs with chemo where weeks I was up - other weeks I was down. It's the nature of the beast. Don't panic - I feel you are ok, given your PET results especially.
...and I've been 'round the sun 50x myself - had cancer 3x and knocked it back 3x- 4 major surgeries - 51x chemo - 55x radiation - 3x stereotactic radiation.
Currently at the 7.4 year mark and still fighting on. Currently back to a 'watch and wait' state.
The best!
-Craig0 -
CEA risingSundanceh said:To Consider....
Norm,
In looking at this, having your PET come back clear is a good sign in and of itself. With nothing lighting up out of the ordinary, this is a good sign.
During chemo treatments, it is not uncommon to see a fluctuation or rise in CEAs. Sometimes, this can mean that the treatments are killing off those cancer cells, which emit a protein into the blood upon their demise, which will make the CEA level rise. This is not uncommon or abnormal. It does happen.
7.5 before surgery was not abnormally high, just a couple of points out of a smoker's CEA range. Going to 4.1 after surgery was good and put you back in good condition. I've included CEA references for you below:
smoke range 3-5
non-smoker 0-3
The fact that you are sitting on 12 could be that the level is up to the death of cancer cells, as I stated above. Combined with a good PET, it does not sound alarming, although I know a rise always gets everyone's attention. It's ok to be concerned and you can use this as sort of a baseline for your next test.
If levels were to continue to rise steadily or exponentially from there, there might be something to look at.
I'm sure your onc would confirm this data after you speak with him. It's good to be cautious but don't jump the gun just yet. Levels do rise with chemo and can go the other way as well.
I had CEAs with chemo where weeks I was up - other weeks I was down. It's the nature of the beast. Don't panic - I feel you are ok, given your PET results especially.
...and I've been 'round the sun 50x myself - had cancer 3x and knocked it back 3x- 4 major surgeries - 51x chemo - 55x radiation - 3x stereotactic radiation.
Currently at the 7.4 year mark and still fighting on. Currently back to a 'watch and wait' state.
The best!
-Craig
Thank you everyone for your responses. I know it takes time to write a note and I appreciate your thoughtfulness.
All of your answers both individually and collectively, were extremely helpful in giving me a better picture and understanding.
I suspected much of what you said. Hearing it from people who have been through it however is so very valuable.
The obvious question is why couldn't I get this basic information from my oncologist? That is a piece of another much larger story. That is why I'm also in search of a second opinion.
It is very nice to have all of you here with your vast range of experiences and also your appreciation for many of my very terrifying fears.
Thank you again!
Norm0 -
Norm
After surgery and chemo's my CEA had started to rise, I started to get scared, then a couple of months later it went back down, my scan showed No Evidence of Disease, soooo CEA may rise, but then again in a couple of months it may fall.
And by the way, love the pic of you looking at all that wood you're going to have to split, I remember those days well.
Stay loose.
Winter Marie0 -
Splitting woodherdizziness said:Norm
After surgery and chemo's my CEA had started to rise, I started to get scared, then a couple of months later it went back down, my scan showed No Evidence of Disease, soooo CEA may rise, but then again in a couple of months it may fall.
And by the way, love the pic of you looking at all that wood you're going to have to split, I remember those days well.
Stay loose.
Winter Marie
That is why we have sons! He was a great help. The wood is Tamarack or Western Larch. One of the best, along with oak, but easier to split0 -
Watch and waitSundanceh said:To Consider....
Norm,
In looking at this, having your PET come back clear is a good sign in and of itself. With nothing lighting up out of the ordinary, this is a good sign.
During chemo treatments, it is not uncommon to see a fluctuation or rise in CEAs. Sometimes, this can mean that the treatments are killing off those cancer cells, which emit a protein into the blood upon their demise, which will make the CEA level rise. This is not uncommon or abnormal. It does happen.
7.5 before surgery was not abnormally high, just a couple of points out of a smoker's CEA range. Going to 4.1 after surgery was good and put you back in good condition. I've included CEA references for you below:
smoke range 3-5
non-smoker 0-3
The fact that you are sitting on 12 could be that the level is up to the death of cancer cells, as I stated above. Combined with a good PET, it does not sound alarming, although I know a rise always gets everyone's attention. It's ok to be concerned and you can use this as sort of a baseline for your next test.
If levels were to continue to rise steadily or exponentially from there, there might be something to look at.
I'm sure your onc would confirm this data after you speak with him. It's good to be cautious but don't jump the gun just yet. Levels do rise with chemo and can go the other way as well.
I had CEAs with chemo where weeks I was up - other weeks I was down. It's the nature of the beast. Don't panic - I feel you are ok, given your PET results especially.
...and I've been 'round the sun 50x myself - had cancer 3x and knocked it back 3x- 4 major surgeries - 51x chemo - 55x radiation - 3x stereotactic radiation.
Currently at the 7.4 year mark and still fighting on. Currently back to a 'watch and wait' state.
The best!
-Craig
Craig,
Very good counsel, though can be difficult. The Info here makes it possible.
Norm0 -
Much informationtanstaafl said:hunting wild game
Sorry to hear about the CEA rise. That's when we started tight spacing extra tests, and extra chemistry.
The obvious question is, "is this a false alarm?", and that may play out over 3-5 months (per jscho's linked papers on CEA elevations) even with extra data. In our case, it was not a false alarm and CA19-9 started to go exponential while CEA stair stepped (increased immunochemo, CA19-9 dropped back 2/3rds, CEA stopped climbing), and family did a dozen+ interviews - radiologists, surgeons, rad / med oncs in order to move harder toward the cure zone than SOP (finally cut out para aortic lymph nodes in a hard won 2nd surgery while on cimetidine and immunochemo).
Many times we haven't been satisfied with standard, cost controlled answers. The things that I reproach myself for, I've been lulled by others' pat answers and my own wait-in-line reflex.
-----
We initially scouted for the most abnormal biomarkers reasonably related to CRC with a salvo of ten or so adenocarcinoma biomarkers. Early on we've inhibited VEGF, EGFR, HIF-1a, COX2, and likely HedgeHog, maybe HER2 to combat further metastatic spread of new microscopic clusters; raised or tried to maintain WBC (6 to 9); as well as applying basic UFT (5FU) - LV continuously for anti-angiogenesis.
We've been tracking CA19-9, MCV and ESR as well as CEA on 3-5 week spacings (shopped hard for a good price). 7-14 day repeats if any questions arise. If anything remains hidden after CT and PET, then MRI with a 3T magnet seems next, in so kind of time spaced exam strategy. We never let insurance or re-imbursements dictate the program.
If the mets won't take a hint and wither on immunochemo, we are going to find the met, find a surgeon, an interventional radiologist (RFA), or maybe a SBRT to remove them. Hell or high water, all while maintaining immunochemo.
------
Oh, yes. I had to arrange an independent reading on a "clear CT" to find the source of the CEA problem for the second surgery - first radiologist clean missed it.
Tanstaafl,
I will keep your testing suggestions in mind. I was wondering about the MCV monitoring. Was that in terms of catching iron deficiency early?
Thanks
Norm0 -
hi NormKimo Sabe said:Splitting wood
That is why we have sons! He was a great help. The wood is Tamarack or Western Larch. One of the best, along with oak, but easier to split
I have nothing profound to add except we are the same age...hahah
yes I love your photo too...we have a cabin here in Canada and we cut split and burn,,,,pine, cedar, birch spruce and maple....
all the very best to you in your search for answers.....
maggie...0 -
MCV, potential surrogate markerKimo Sabe said:Much information
Tanstaafl,
I will keep your testing suggestions in mind. I was wondering about the MCV monitoring. Was that in terms of catching iron deficiency early?
Thanks
Norm
Some papers indicate that MCV elevation *might* be used as a surrogate biomarker for 5FU (and capecitabine) effectiveness, as least at the outset. A peak of about 12-15% higher than baseline MCV, or better yet, peak MCV over 102 is considered an indicator of useful treatment effect.
Capecitabine-MCV,
Typically MCV peaks in 4-7 months. Oncologists focused on MTD treatments and node killing may switch treatment when MCV declines much, as an assumed progression or loss of effectiveness. However, there may be divergences over time between 5FU effect on RBC size (MCV), tumor nodal killing power, and monolayers of isolated tumor cells first landing ("birth control" for met cells).
Since my wife is w/o known active nodes, I am focused on "birth control" of isolated cells landing, where some literature may imply continuous low dose tx is fairly useful even if MCV has receded some. Even with an active cluster of p-nodes, the dozen+ para-aortic cancerous nodes my wife carried for over a year (gagged over misstaging!), no new mets were found (CT, PET/CT, visual surgical inspection). Although I do give many other molecules, more than just UFT-LV (oral 5FU derivative), like cimetidine, credit also.
The results of the various Japanese literature are suggestive that continuous low dose may be effective "birth control" long after the MCV peak, even if not adequately effective against nodes and macroscopic tumors.0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.6K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 308 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 791 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 56 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 534 Sarcoma
- 719 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards