getting on that roller coaster again Update!

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traci43
traci43 Member Posts: 773 Member
edited March 2015 in Colorectal Cancer #1

It's 7 1/2 months post surgery to remove three tumors and what was supposed to be a temporary colostomy that became permanent.  CEA was holding steady at 1.5 (3 two-month interval checks) and yesterday shot up to 2.1.  Never a good sign for me.  Trying to be positive, will check again in one month.  Way too early for a PET Scan or CT Scan, they never show anything until I'm at least at 8.

I've been at this 7 1/2 years now and am not looking forward to chemo again. Especially since after the last surgery, my surgeon is not going to want to try surgery again any time soon.  Mets are usually to the lymph nodes so not many other options there.  I do look at the fact that my body seems to fight it off in my organs as a good thing.

Right now I'm so disappointed, not really afraid.  I still don't think I'm going to die from this.  I just don't want to get on the roller coaster again.

Traci

Update:

Went to the Onc a couple of days ago and my CEA was 2.2, that's just 0.1 rise in 6 weeks.  I feel much better.  Given my history I may have some activity, but it's not gaining any ground which is great!  I am really trying to enjoy myself both at work and at home.  Hubby and I heading to Vegas soon to see Elton John and Bill Maher, that should be a blast.  Met up with my Grand Bethel Sisters that I've known for 30 years last weekend and had a blast catching up.  Life's pretty good.  Have a great weekend everyone.  Traci

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
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    Hi Traci, I've been thinking

    Hi Traci, I've been thinking of you and wondering how things are going.   sorry it may be back, but you have such a great attitude.  Hopefully the jump was a lab error or something not related.  

    someone was telling me about proton radiation for lymph nodes, but I haven't looked into it ... Do you know if that can be done if it has come back in your lymph nodes?

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #3
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    We were hoping the big

    We were hoping the big surgery would totally remove the cancer, and we didn't have to worry about it for a while, but it seems not ending... I just feel this is eating our life away. I totally understand what you are saying. I feel so exhausted and disappointed after such a long time too.

  • traci43
    traci43 Member Posts: 773 Member
    #4
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    jen2012 said:

    Hi Traci, I've been thinking

    Hi Traci, I've been thinking of you and wondering how things are going.   sorry it may be back, but you have such a great attitude.  Hopefully the jump was a lab error or something not related.  

    someone was telling me about proton radiation for lymph nodes, but I haven't looked into it ... Do you know if that can be done if it has come back in your lymph nodes?

    That's new!

    I haven't heard of that but I'm going to make an appt with Dr. Lenz at USC to find out what is new.  I will definitely ask and report back!  thanks for the kind words.  Traci

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #5
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    How are you doing Traci. Any

    How are you doing Traci. Any new news.

  • traci43
    traci43 Member Posts: 773 Member
    #6
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    janderson1964 said:

    How are you doing Traci. Any

    How are you doing Traci. Any new news.

    no news yet

    I've got an appointment next week.  Should know after the blood tests are in.  Thanks for asking Jeff.  Traci

  • Easyflip
    Easyflip Member Posts: 588 Member
    #7
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    traci43 said:

    no news yet

    I've got an appointment next week.  Should know after the blood tests are in.  Thanks for asking Jeff.  Traci

    You are

    quite the fighter. 7 plus years is a long time and it must be disappointing to keep having to battle. It is good your organs are resilient because that will keep you living. I have noticed in my short 2 year fight that the research and technology are steadily marching forward. Our current methods of chemo/radiation/surgery or I like to call poison/burn/slash feel archaic to me. Immunotherapy/vaccines/genetic analysis seem a much more refined way to go and may be in our near future, let's hope so; or some novel approach no one's thought of yet. Who knows? a major breakthrough may be just around the corner. I'm optimistic and let's hope we all hang in there until that day! Good luck with your upcoming visit and keep us posted on what's happening. Best wishes!

    Easyflip/Richard

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    #8
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    Easyflip said:

    You are

    quite the fighter. 7 plus years is a long time and it must be disappointing to keep having to battle. It is good your organs are resilient because that will keep you living. I have noticed in my short 2 year fight that the research and technology are steadily marching forward. Our current methods of chemo/radiation/surgery or I like to call poison/burn/slash feel archaic to me. Immunotherapy/vaccines/genetic analysis seem a much more refined way to go and may be in our near future, let's hope so; or some novel approach no one's thought of yet. Who knows? a major breakthrough may be just around the corner. I'm optimistic and let's hope we all hang in there until that day! Good luck with your upcoming visit and keep us posted on what's happening. Best wishes!

    Easyflip/Richard

    Prayers

    and warm thoughts. I know the roller coaster feeling is the worst. Big cyber hugs. You've been so supportive and caring. Hopefully, it will be good news. 

    Yolanda

  • traci43
    traci43 Member Posts: 773 Member
    #9
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    Thanks everyone!

    I was supposed to see the oncologist on Tuesday for the latest numbers.  Went to the lab to draw blood---no orders and it's Saturday so I have to wait until Monday to call.  The CEA won't be ready for my Tuesday AM appt, so I'm going to reschedule.  No point in going in if I don't have that.

    Richard - Yes, I'm hoping for one of those more refined techniques. 

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #10
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    traci43 said:

    Thanks everyone!

    I was supposed to see the oncologist on Tuesday for the latest numbers.  Went to the lab to draw blood---no orders and it's Saturday so I have to wait until Monday to call.  The CEA won't be ready for my Tuesday AM appt, so I'm going to reschedule.  No point in going in if I don't have that.

    Richard - Yes, I'm hoping for one of those more refined techniques. 

    Frustrating!

    I am sorry your blood draw was cancelled. 

    I do so hope all comes out well for you. 

     

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