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Re: Increasing CEA

Posted: Tue Jun 21, 2022 1:31 pm
by Claudine
Hi Dennis,
Sorry about the increase... It's so nerve wrecking :(
One thing I'd ask your doc is whether you should get a PET scan instead of the usual CT. My husband had a series of "clear" CT scans despite high CEA values, and it took a PET to find a tumor in his rectum - it was most likely there before but wasn't detected.

Re: Increasing CEA

Posted: Tue Jun 21, 2022 2:20 pm
by Dennyp
Claudine wrote:Hi Dennis,
Sorry about the increase... It's so nerve wrecking :(
One thing I'd ask your doc is whether you should get a PET scan instead of the usual CT. My husband had a series of "clear" CT scans despite high CEA values, and it took a PET to find a tumor in his rectum - it was most likely there before but wasn't detected.

Hi Claudine,

Yes, that’s the plan. We had agreed that if the CEA continued to rise I would get a PET scan. Was you husbands tumor in a new location or was it a recurrence?

Re: Increasing CEA

Posted: Tue Jun 21, 2022 2:28 pm
by Claudine
Was you husbands tumor in a new location or was it a recurrence?


We'll never know! His primary tumor wasn't found when he was first diagnosed 4+ years ago, so this rectal one could either be a second primary (the onc's opinion), or it could be the original primary that finally became large enough to be detectable (the rectal surgeon's opinion). I read a research article that shows that primary tumors as small as a pencil head can metastasize...

Re: Increasing CEA

Posted: Tue Jun 21, 2022 2:32 pm
by Dennyp
Thanks, I never knew that. Being the optimist I am, I’m still holding out hope it’s nothing. On every CT and PET scan I’ve had they have noted gallstones, maybe that has something to do with the rise. I guess I’ll find out soon!

Re: Increasing CEA

Posted: Tue Jun 21, 2022 2:35 pm
by Peregrine
Dennyp -

Have you ever had your primary tumor tested for MSI-status and for KRAS/NRAS/BRAF mutation status? This might be relevant if you ever have to go back on chemo.

Re: Increasing CEA

Posted: Tue Jun 21, 2022 2:38 pm
by Dennyp
Yes I have, MSS, KRAS, G12D. Not a whole lot of options is my understanding. Actually this was the results from a recurrence I had to a single lymph node. Is it possible the primary tumor was different?

Re: Increasing CEA

Posted: Tue Jun 21, 2022 10:39 pm
by Peregrine
Dennyp wrote:Yes I have, MSS, KRAS, G12D. Not a whole lot of options is my understanding. Actually this was the results from a recurrence I had to a single lymph node. Is it possible the primary tumor was different?

Hi Denny,
I don't really know the answer to your question, but I suppose that in some cases a met might begin to mutate under certain circumstances, for example if the met has been treated by a lot of strong chemo and is now starting to develop resistance. This is just a guess. I think I remember reading about someone where this sort of thing happened.

Hopefully you won't ever have to go back on chemo again, but if you do, there might be some new clinical trials available for MSS patients. A link to Fight CRC's MSS clinical trial finder can be found here.

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53238&p=507238#p490042

For example, here is a search for G12D-relevant Phase III clinical trials in the U.S., but there are over three hundred G12D trials of various kinds in other places:

https://fightcolorectalcancer.org/trial-results/?location%5B0%5D=united-states&phase%5B0%5D=phase-3

There are lots of trials for KRAS G12D because it's one of the most common KRAS mutations.
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Re: Increasing CEA

Posted: Tue Jun 21, 2022 11:32 pm
by Dennyp
Awesome info, thanks!

Re: Increasing CEA

Posted: Wed Jun 22, 2022 12:49 pm
by Dennyp
My doctor wants to wait another month and do another CEA. I like this plan!

Re: Increasing CEA

Posted: Thu Jul 21, 2022 2:02 pm
by Dennyp
My CEA today stayed the same, I assume that’s a good sign. My oncologist doesn’t seem too concerned so we’ll do a PET scan for my next routine scan.

Re: Increasing CEA

Posted: Thu Jul 21, 2022 3:53 pm
by Rikimaroo
That is good news. Always great to here stability, but always anxiety until the next CEA test my friend. I know how you feel, its crazy, but you know what live for the present brother, not the future.

Riki

Re: Increasing CEA

Posted: Mon Jul 25, 2022 6:02 pm
by skb
Dennyp wrote:My CEA today stayed the same, I assume that’s a good sign. My oncologist doesn’t seem too concerned so we’ll do a PET scan for my next routine scan.


Good idea waiting out and measuring CEA before doing any drastic surgery.