New with question

Loveconquersall

I have visited this board occasionally at the urging of our son, I believe he reads this all the time. My husband was dx April 2008 at the age of 49 with stage IV (mulitiple liver mets and 4 lymph nodes affected), colon resection May 2008, chemo ever since (Xeloda, Avastin every 3-4 weeks and Oxilplatin until November 2008). He had SIRS Spheres in Jan & Feb of 2009 to treated 20+ tumors in liver (liver surgery not an option). Latest PET scan showed reduction in number of tumors and only 4 active tumors. Had RFA this past Tuesday, Dr was not able to get one of the active tumors because although they could see it on the PET scan he couldn't see it on the CT scan, 2 of the tumors were technically too large, but he did as much as he could, third tumor he felt he got completely. They will be doing another PET scan in 2 months and the plan is to stay on the chemo and RFA them if and when others become active.

My question is about CEA. After the SIRS Spheres his CEA dropped to the mid 6's, early July it was in the 11's and last week it was at 20.9 so he is freaking out about it. What doesn't make sense to me is that the 20.9 is the highest it has ever been (even when all 20+ tumors were active and the tumor in the colon hadn't been removed his CEA was around 10). Nobody seems to be able to give me a logical explanation for why the CEA would be at it's all time high when there were only 4 tumors active. Would the fact that so few tumors are active that they would be really amped up and therefore increasing the CEA, or should we just ignore this number. He obsesses about that number every appointment and I hate for him to put so much emphasis on this number, especially when he never would have known it was increasing if the test hadn't been done. His activity level, appetite or fatigue level hadn't changed until he heard that darn number. Sorry this is so long, hard to condense it all. Any information on just how critical this number is would be greatly appreciated.

mommyof2kds

sorry to hear about your
sorry to hear about your husbands diagnosis.. I can't offer much info on the subject since my oncologist told me that My CEA level is not a good indicator for me... I am sure there will be others responding to your post, there are alot of wonderful people on here. Wishing you all the best.. Petrina

GetBusyLivin

Hi,
I'm new to this board
Hi,
I'm new to this board too, but I'll tell you what our doc has said about the CEA number. My husband's was 96 right after his surgery, but since chemo began it has come down to between 45-55. It has seemed to plateau in that area, which is kinda discouraging. But the doc said not to worry about small fluctuations, that he only looks for massive leaps in that number. He likened it to blood pressures, you can get one reading and 5 minutes later get a completely different reading, so it's not extremely specific.

Unknown

This comment has been removed by the Moderator

shrevebud

Hi:

I'm not an expert on CEA levels by any means, however I have stage IV colon cancer with liver involvement and have been fighting it for about 2 and a half years. I'm 49 also. My CEA goes up and down depending on where I am in treatment (on chemotherapy or off) - right now I'm off. It's a measure, just like triglycerides or blood glucose. I don't get stressed out about numbers - I go by how I feel and how much energy I have, etc. It may be elevated in part as a result of the body's reaction to having cancer. He may be focusing on it out of fear/anxiety -like it's saying to him how much cancer he has or doesn't have in his body - I'm just making suppositions here - no one really knows how another person feels when they are in a situation like this and it's hard for others on the outside (those who haven't experienced having this disease) to understand - which to me is perfectly understandable. Maybe you can get him to focus on the good things, like the reduction in the amount of tumors, etc. Wishing the best of luck to both of you. Roy

hopefulone

cea
Cea was not a great indicator for my husband; however, I have read and heard at least several times before on here that when tumors die cea sometimes goes up as they filter out through your system. I don't know whether it's a fact or not, but you may want to check it out with onc. God Bless.

Patteee

My first CEA I remember, was
My first CEA I remember, was after chemo treatment 10- and done by my Mayo surgeon in preparation for my colostomy takedown. She said it was a 3.4 (or somewhere around there) and although it was normal wanted me to tell my oncologist about it. My onco was confused, as in, "I never do a CEA when a person is still having chemo because chemo can skew the results, why did she do one??"

The second one I had in April 09 was .05

Then I had a CT scan in June and it was clear.

The third CEA was about 3 weeks ago and it was 2.6- still very normal, but freaking me out on the jump from April. My onco said the change could be due to a new lab and he wasn't worried about it. He will redo it in Nov.

So there ya go. My experience, brief that it is and with low numbers- really has shown me a couple of things with the CEA- doctors don't even agree on the usefullness of the test and a different lab could be the reason for a different number. I take it as being just one more snapshot in time of what is going on in my body. The meaning of that snapshot is anybody's guess!

Loveconquersall

Patteee said:

My first CEA I remember, was
My first CEA I remember, was after chemo treatment 10- and done by my Mayo surgeon in preparation for my colostomy takedown. She said it was a 3.4 (or somewhere around there) and although it was normal wanted me to tell my oncologist about it. My onco was confused, as in, "I never do a CEA when a person is still having chemo because chemo can skew the results, why did she do one??"

The second one I had in April 09 was .05

Then I had a CT scan in June and it was clear.

The third CEA was about 3 weeks ago and it was 2.6- still very normal, but freaking me out on the jump from April. My onco said the change could be due to a new lab and he wasn't worried about it. He will redo it in Nov.

So there ya go. My experience, brief that it is and with low numbers- really has shown me a couple of things with the CEA- doctors don't even agree on the usefullness of the test and a different lab could be the reason for a different number. I take it as being just one more snapshot in time of what is going on in my body. The meaning of that snapshot is anybody's guess!

Thank you everyone
I told him some of things I read on here, not sure he is really hearing me. His CEA was never that high based on how many tumors he has in his liver. Our oncologist and iterventional radiologist seem to look at the numbers, mention it to him and then blow them off when they go up or down. Early on our oncologist made the comment that all of his blood work didn't make sense, his liver numbers were all within normal range, everything was so normal that all the docs we saw after initial diagnosis didn't think it had gone further than the colon. I just wish he wouldn't let a number dictate how he feels at times. I really try to understand what he is going through, but as one of you said if you are not there, you can't understand. During one frustrating conversation I had mentioned that if something happened to him I would be devastated, that this wasn't any easier for me. Well, I got put in my place with his one simple reply - "you will still be breathing and a part of the kids and grandkids lives". He's absolutely right and there is no response to that.

Sorry, I got off track, I tend to ramble sometimes. Again, thank you all for your kind words and advice. I will check back as I can because there is lots of great information and advice.

Marisa

sfmarie

Loveconquersall said:

Thank you everyone
I told him some of things I read on here, not sure he is really hearing me. His CEA was never that high based on how many tumors he has in his liver. Our oncologist and iterventional radiologist seem to look at the numbers, mention it to him and then blow them off when they go up or down. Early on our oncologist made the comment that all of his blood work didn't make sense, his liver numbers were all within normal range, everything was so normal that all the docs we saw after initial diagnosis didn't think it had gone further than the colon. I just wish he wouldn't let a number dictate how he feels at times. I really try to understand what he is going through, but as one of you said if you are not there, you can't understand. During one frustrating conversation I had mentioned that if something happened to him I would be devastated, that this wasn't any easier for me. Well, I got put in my place with his one simple reply - "you will still be breathing and a part of the kids and grandkids lives". He's absolutely right and there is no response to that.

Sorry, I got off track, I tend to ramble sometimes. Again, thank you all for your kind words and advice. I will check back as I can because there is lots of great information and advice.

Marisa

A Question for Marisa
My sister is in a similar situation. Curious where your husband had the spheres treatment? Surgery is also not an option; 12 mets to liver.
Thanks!

Loveconquersall

sfmarie said:

A Question for Marisa
My sister is in a similar situation. Curious where your husband had the spheres treatment? Surgery is also not an option; 12 mets to liver.
Thanks!

SIRS Spheres
After being turned down by U of M and Karmanos, we went to Beaumont Hospital in Royal Oak, Michigan (in Oakland County) and saw Dr. Michael Savin - he is terrific. He is at least willing to try, something nobody else was willing to do. If your sister is anywhere near Michigan, he is worth at least talking to. FYI - our BC/BS covered both SIRS Spheres procedures and the RFA, so these are not considered experimental anymore, cause if they were BC/BS would have figured out a way to deny the claim. Good Luck and your sister is in my prayers..

Marisa