our update and follow up plan

emrose

Hello everyone

I rarely post, but I read every day. I appreciate all the information I have received here, and the support I get when I do post!

Just as an update:
My husband was diagnosed in December with stage IIIb colon cancer (large tumor in sigmoid, 1 of 26 lymphnodes positive). He had been misdiagnosed with crohn's disease and was getting surgery to remove scar tissue when they found the tumor. He's only 34, I'm 27 and we had been thinking about starting a family. Before starting chemo, we had a month so we tried to get pregnant. Fast forward to today and he has one more chemo round and we are due to have our baby boy October 10!! What a whirlwind!!

After three treatments of Folfox the side effects became unbearable. The neuropathy was horrible from day one. He couldn't keep anything down, including water. He was severely dehydrated and was not getting the nutrients he needed. It was horrible. He's always been impacted by drugs and even had a hard time with allergy meds so I wasn't suprised, but very sad that he was reacting that way. It made me nervous, but our oncologist switched him to Folfiri and he's been doing better although the chemo is still never fun. I hope that the folfiri is just as effective and we don't regret making the change. That made me really nervous, but I posted here when we switched and was reassured that several members had good luck with the folfiri.

So - in 2 weeks he gets treatment #12!!! Woohoo!!! I'm SOOOOO proud of him! He's continued to work and be supportive during my pregnancy and I love him now more than ever. I wanted to share the follow up plan with you and get your feedback. This is what our oncologist said:

-blood draw to test CEA levels a month after chemo (early October right before we welcome our son into the world!)
-port removed early October as well
-CT scan and colonoscopy scheduled for sometime soon (no specific date yet)
-Then CEA tested every 3 months
-CT scan and colonoscopy done annually

Is this enough? He had a PET after being diagnosed which was clear and confirmed it had not spread. Our onc said most insurance wont cover a PET at this point...Just in staging or following the activity of a recurrence. I was also surprised he'd only be scanned annually. We never got CEA levels before the cancer was removed because we didn't know it was cancer until it was removed! I think they checked his levels before chemo though.

I'm curious if you think this is an aggressive enough follow up? I love that it's not too intense, and he's thrilled to not get scanned all the time, but it makes me nervous. We have a new baby on the way and I am terrified that the cancer will come back when were still trying to get used to our new life with a baby. The follow up appts already make me nervous, but I just don't want to miss anything. My husband has absolutely HATED chemo and I'm scared he wont want to continue treatment if he had too, but I cant imagine this world without him... especially given where we are in life and the new journey we are about to begin.

Thoughts?

Thanks in advance!!!

PamPam2

Feedback
Hi
Sounds like the same routine I have had. Am 5 years since stage 4 dx and treatments. Got CT and scopes yearly, now going to every 2 years for the scope. Had CEA every 3 months until just this year, now going to every 6 months.
Best hopes that your husband remains clear, congratulations on your baby, you have been blessed.
Pam

johnnybegood

hi
its been a while,your plan sounds good to me.im glad your husband has made it thru.i also have made it my onc only wanted me to do 10 treatments since i was having a hard time with side effects,i am now 5 weeks out of chemo and still taking pain meds the neuropothy is killing me in my hands and feet.it just takes time,hope your husband does well after he is done.good luck and nice to hear from you again.keep us posted on the new baby.Godbless....johnnybegood

Patteee

oh fun- congrats on the baby
oh fun- congrats on the baby my birthday is the 9th!

I also was dx'd with stage 3-b cc in May 08. I am following the exact same routine as your husband. Just had my CEA done last week- colonoscopy in Feb, CT scan next June. I also was concerned this seemed rather skimpy on the follow up. My oncologist assured me that he was following the recommended guidelines. I also called Mayo in Rochester, which is where I had my surgeries, they also confirmed that this was indeed the "standard".

PhillieG

Feedback on Plan
Congrats on the baby! I think the plan sounds good. The only thing I would prefer is maybe 2 CT scans a year but if they test the CEA every 3 months, that sould be enough monitoring.
Again, congrats on the baby!
-phil

dianetavegia

Pretty much the same here
I saw a thread on www.colonclub.com that showed the new standards for 'us' is as you described.

nudgie

I was DX
with Stage II Colon Cancer in 2006 and also finished my FLOFOX treatments in 2006. Had my colon resection surgery in 2007 and have been NED every since. My Onc gave me the below follow-up plan due to my age of DX (42yrs).

a) CT Scan and bloodwork every 3 months first year and if all is good
b) CT Scan and bloddwork every 6 months second - fifth years
c) CT Scan and bloodwork once a year for peace of mind if necessary.
d) Colonoscopy in 2006 before resection surgery and then at the end of 2007 and 2008.
e) Colonscopies are pre my request or every 3 yrs per my GI Doc.

I hope this helps

emrose

nudgie said:

I was DX
with Stage II Colon Cancer in 2006 and also finished my FLOFOX treatments in 2006. Had my colon resection surgery in 2007 and have been NED every since. My Onc gave me the below follow-up plan due to my age of DX (42yrs).

a) CT Scan and bloodwork every 3 months first year and if all is good
b) CT Scan and bloddwork every 6 months second - fifth years
c) CT Scan and bloodwork once a year for peace of mind if necessary.
d) Colonoscopy in 2006 before resection surgery and then at the end of 2007 and 2008.
e) Colonscopies are pre my request or every 3 yrs per my GI Doc.

I hope this helps

THANKS EVERYONE!
I really appreciate all of the feedback. This makes me feel much better. I might look into the possibility of scans every 6mo, but overall it's just reassuring to know we are getting the standard protocol. I'm just so glad to be moving on to the next phase of all this!!!

Thanks again everyone. I admire you all and really appreciate the support this board provides!

I'll try to update again in the near future when my husband is NED and we have a new son

tootsie1

Good to hear from you
I'm glad to hear an update from you. It's been awhile! Congratulations on the baby-we want to see pictures! And I'm glad your husband is doing so well, especially after all the trouble with the medication.

*hugs*
Gail