The Colon Club

I apologize if this thread is active already but I did a CEA search and returned nothing even though I vaguely remember putting something out there previously.

So DH has been fighting are for 1 full year. His CEA was the highest (unreadable) a 30 year veteran nurse had ever seen. After a few months that number dropped and dropped. Its lowest has been in the 50s he's back up in the 90s and I keep trying to tell myself its because he was forced to take a break from all chemo in order for 2 surgical spots to heal (mole removal NOT CANCEROUS & toenail removal due to chemo causing ingrowns)

I've suggested he talk about a new colonoscopy since its been a year since his last but for obvious reasons is reluctant. How often should he get colonoscopies? Needing a little encouragement today.

I was told to get a colonoscopy every year for 5 years. His oncologist or gastroenterologist should be able to tell him the frequency he needs to get them at.

I don't believe a colonoscopy is needed.

From what you are saying, He is having lots of scans? He has active tumours which are being treated by the chemo.

I as told 1 year after colectomy, after that was complete and clean, I was told 3 years.

Mohrfamily wrote:So DH has been fighting are for 1 full year. His CEA was the highest (unreadable) a 30 year veteran nurse had ever seen. After a few months that number dropped and dropped. Its lowest has been in the 50s he's back up in the 90s and I keep trying to tell myself its because he was forced to take a break from all chemo in order for 2 surgical spots to heal (mole removal NOT CANCEROUS & toenail removal due to chemo causing ingrowns)

I've suggested he talk about a new colonoscopy since its been a year since his last but for obvious reasons is reluctant. How often should he get colonoscopies? Needing a little encouragement today.

If he's been off chemo for awhile, it's only logical that would cause a rise in his CEA. So you're right about that.

As far as a new colonoscopy, generally those are not done while a patient is in active treatment unless there's a strong medical reason. So get him back on chemo and I bet those CEA numbers start coming down!

Juliej

CEA reports came back was 92 back down to 64!

Hey that's great!! How's he feeling? I'm currently in the waiting room to get disconnected from cycle 4. Getting my CEA drawn Monday after next for the start of cycle 5. Really excited to see if my number is continuing to drop.

Mohrfamily wrote:CEA reports came back was 92 back down to 64!

Yes! Yes! Yes!
Doing the happy dance for you!

Juliej

AmyG wrote:Hey that's great!! How's he feeling? I'm currently in the waiting room to get disconnected from cycle 4. Getting my CEA drawn Monday after next for the start of cycle 5. Really excited to see if my number is continuing to drop.

In an attempt to "protect" me and the kids he doesn't show a lot of emotion outwardly. I mean he doesn't hide it as well as he thinks but ... Men. I would not say he's fit as a fiddle but he's not laying in a puddle of doubt/pain. I couldn't be prouder to be his wife he fights so hard he's taking vectibix at 100% covered in the painful itchy acne it causes but won't stop taking it because the fight in him is serious he actually will talk crap to his liver.

Amy, my husband had an unreadable CEA at the beginning a year ago higher than 10,000 and he's down to 65. Its fathers day weekend and I plan on celebrating big!

Thank you as well Julie!

AmyG wrote:Hey that's great!! How's he feeling? I'm currently in the waiting room to get disconnected from cycle 4. Getting my CEA drawn Monday after next for the start of cycle 5. Really excited to see if my number is continuing to drop.

I hope it does, same for your husband Mohrfamily (10,000?!? That's crazy, I didn't know CEA levels could get that high!). Our experience so far with CEA levels has been an asymtotic curve drop - a lot at first, then more slowly; but levels are still dropping and since there's still a good size tumor present, I'm not surprise that we haven't reached the "below 2" magic value. I'm always super nervous when I log in after the test results get back (worried that numbers will have crept back up) but so far so good