Running out of options

KarenET
KarenET Member Posts: 2
edited March 2014 in Colorectal Cancer #1
I'm new and am enjoying all your messages. My dad was diagnosed stage IV with liver mets June 2006. They removed a foot of his colon & 11 lymph nodes-all had cancer. He has extensive "tumor burden" in his liver, a lymph node in his stomach area, & the lining around the organs. First-line treatment was FOLFOX with Avastin, but he got worse on this & had terrible side effects. The cancer progressed "substantially". A year ago he started Erbitux with CPT-11 and has had amazing shrinkage of his tumors! The doctors even used the term "miracle"! For the first time they said surgery may become an option. But, Monday they said his cancer has progressed and took him off that treatment. We had 2 options: Xeloda with panitumimab or a Phase I trial. We took the drug option and so far he has no side effects. That's whats frustrating...he feels great, gained back all the weight he had lost (40 lbs!) and all of his counts are normal except his CEA just went from 3 to 20. They keep telling us that resection, etc is not an option. He is 63 and is otherwise healthy. Has anyone had a similar experience? Any advice? He's being treated at the Mayo in Minnesota so I know he's being well cared for, but would anyone advise a second opinion? Any help is greatly appreciated!!!

Comments

  • goldfinch
    goldfinch Member Posts: 735
    #2
    I always think it makes sense to get a second opinion. Especially when they start getting all doom and gloomy. If he still wants to fight this I would go with a second opinion.
    I have used all all options for chemo. I'm currently starting camptosar and vectibix. I've done camptosar and erbitux without much effect. I'm giving it a month to see how it works. If it's not working I'm considering a 3rd opinion. I'm in Burlington, VT. I've gone to Dana Farber for a second opinion.
    I've been treating lung mets with chemo for close to 3 years. They keep telling me that radiation or RFA wouldn't be right for me because it would cause lung damage, but if chemo isn't working isn't it time to consider something more extreme?
    Your father sounds young, healthy and full of life. It wouldn't hurt to talk to someone else.
    Mary
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #3
    My husband also is on xeloda ,has liver mets, but they have shrunk quite a bit. We've gotten conflicting stories(read previous posts)about when to pursue other options. Don't give up. We aren't and are going for another consultation in a week, and if necessary after that, will go for yet another. I am glad your dad feels better. That's an improvement already. God Bless and keep us posted. Diane
  • Ashley123
    Ashley123 Member Posts: 3
    #4
    hopefulone said:

    My husband also is on xeloda ,has liver mets, but they have shrunk quite a bit. We've gotten conflicting stories(read previous posts)about when to pursue other options. Don't give up. We aren't and are going for another consultation in a week, and if necessary after that, will go for yet another. I am glad your dad feels better. That's an improvement already. God Bless and keep us posted. Diane

    I would like to know what any of you know about CEA counts. I have been in chemo for stage IV colon cancer with mets to the liver since January of 2006. Have exhausted all the drugs available. Discontinued chemo 1.5 months ago. My cea count in Sept of 2007 was 501.0 and is presently (Mar. 2008) 2357.2. Was given 6-12 months in Sept. of 2007. Dr. suggested we not get a cea count anymore. What do you know about cea counts?

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