The plan so far

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NEDbound
NEDbound Member Posts: 54
in Colorectal Cancer #1

Hello everyone!

I will have my port placed tomorrow.  I have my first PET/CT scheduled for the 16th.  I have an appointment with my local onc on the 22nd.  And I have an appointment with MD Anderson on Oct 6th.  I want to start Folfox asap, but MD Anderson does not want me to start treatment until after I have my first appointment with them.  That is very frustrating.

Scared to death of the PET.

 

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  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
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    Wait

    I was jut like you, and eager to get on with treatment. In hindsight, waiting for a second opinion would not have made a difference.

    As for the PET Scan; it's basically like a CT Scan, just longer  Make sure your bladder and bowels are empty.  I have a bladder problem, and it's never empty enough for the PET, which makes it an ordeal, as you have to lay still for at least 45 minutes. 

    I am glad things are moving ahead for you  

    Sue - Trubriit

     

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #3
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    I have had a ton of PETs

    and I don't find them any worse than a CT scan.  And I'm always so glad to be getting one  (had to fight for it after the CT scan dropped the ball and didn't pick up my cancer) that I try to keep that in mind while I'm in there.  

    You could ask for Ativan to take prior to the scan if you want to be more relaxed.  That stuff is usually quite effective!

    Good luck and keep us posted~AA

  • NEDbound
    NEDbound Member Posts: 54
    #4
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    PET

    Actually, I'm scared of the result not the test I should say.  It's my first look for mets.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #5
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    NEDbound said:

    PET

    Actually, I'm scared of the result not the test I should say.  It's my first look for mets.

    Blunt

    I mdon't want to be blunt, but basically, if you have Cancer, you now have a lifetime of being scared (I like the word apprehensive) of the next set of results.  There is always going to be another scan on the horizon. 

    I would say 'get used to it' but you don't or at least, I don't. 

    Good luck!

    Sue - Trubrith 

  • NEDbound
    NEDbound Member Posts: 54
    #6
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    blunt

    I can handle blunt.  And I understand what you are saying.  I would just love to stay in my stage IIIc bubble for just a while.  I'd love to raise my children.  It's always just hoping for one more day really.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #7
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    Trubrit said:

    Blunt

    I mdon't want to be blunt, but basically, if you have Cancer, you now have a lifetime of being scared (I like the word apprehensive) of the next set of results.  There is always going to be another scan on the horizon. 

    I would say 'get used to it' but you don't or at least, I don't. 

    Good luck!

    Sue - Trubrith 

    Sue you took the words right

    Sue you took the words right out of my mouth. I couldn't have said it any better.

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #8
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    NEDbound said:

    blunt

    I can handle blunt.  And I understand what you are saying.  I would just love to stay in my stage IIIc bubble for just a while.  I'd love to raise my children.  It's always just hoping for one more day really.

    You really do have a positive

    You really do have a positive attitude, Summer. Keep it close to your heart. MD Andersen is a great place and that is an important beginning. You'll do well...you have to :-)

    CM

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #9
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    NEDbound said:

    blunt

    I can handle blunt.  And I understand what you are saying.  I would just love to stay in my stage IIIc bubble for just a while.  I'd love to raise my children.  It's always just hoping for one more day really.

    Good luck - hold on to the

    Good luck - hold on to the hope.  You may get a cure and not only raise your kids, but also help with the grandkids!  I hope so!

    Not sure if you are aware or have help with the kids, but after a pet scan, they recommend you keep a certain distance from people for 24 hours, especially children and pregnant women.  It makes me nervous every time my husband has a scan.   They say an arms length away I think.

  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #10
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    PET scans

    PET scans are sooo cooool!  And they use colors.  They look just like those encyclopedias from the 60s with the picture of the human body and those clear sheets, so you could pull back all the layers!  I got my PET scan and my first tatoos all in the same week!  Okay the tatoos where markers for radiation treatment, but they were tatoos.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #11
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    jen2012 said:

    Good luck - hold on to the

    Good luck - hold on to the hope.  You may get a cure and not only raise your kids, but also help with the grandkids!  I hope so!

    Not sure if you are aware or have help with the kids, but after a pet scan, they recommend you keep a certain distance from people for 24 hours, especially children and pregnant women.  It makes me nervous every time my husband has a scan.   They say an arms length away I think.

    The varying instructions on these things

    is so weird.  I was never told that!  Just something about getting on planes and being prepared for Homeland Security to jump on you and drag you away.  :D

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #12
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    annalexandria said:

    The varying instructions on these things

    is so weird.  I was never told that!  Just something about getting on planes and being prepared for Homeland Security to jump on you and drag you away.  :D

    Really?!  I'm hoping it's just an extra precaution they recommend because between the scans and the chemo, I do get a bit worried about exposure to the kids.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #13
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    jen2012 said:

    Good luck - hold on to the

    Good luck - hold on to the hope.  You may get a cure and not only raise your kids, but also help with the grandkids!  I hope so!

    Not sure if you are aware or have help with the kids, but after a pet scan, they recommend you keep a certain distance from people for 24 hours, especially children and pregnant women.  It makes me nervous every time my husband has a scan.   They say an arms length away I think.

    I've never heard of that, either

    Interesting!

    Sue - Trubrit

  • NewHere
    NewHere Member Posts: 1,427 Member
    #14
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    annalexandria said:

    The varying instructions on these things

    is so weird.  I was never told that!  Just something about getting on planes and being prepared for Homeland Security to jump on you and drag you away.  :D

    I Was Told Something Like That

    I think they mentioned an item along those lines.  And they did give me a card due to the radioactivity.  There is enough to trigger some of the devices NYPD uses and it seems it has happened at least once.  They did not seem to be relaying an urban legend, and they knew of a patient.  I have kept the card in my wallet.  Sort of a keepsake from it all because it a weird way kind of cool.  Or something.

  • Coppercent
    Coppercent Member Posts: 158
    #15
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    Children and Pregnant Women

    I have always been told to stay away from babies and pregnant women for 24 hours after a PET. I have had a lot and they remind me of that each time I have a scan. 

  • NEDbound
    NEDbound Member Posts: 54
    #16
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    Thanks

    Thanks for all the info about PETs.  I will definitely ask about recommendations for staying clear of my family!!!

    Mediport placed today without complications!  Ready for chemo!

    Found out MSS and KRAS positive. Yuck.

    Hoping my PET is negative and the "low grade" status of my tumor are still beneficial.

  • Mogie
    Mogie Member Posts: 1
    #17
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    Trubrit said:

    Blunt

    I mdon't want to be blunt, but basically, if you have Cancer, you now have a lifetime of being scared (I like the word apprehensive) of the next set of results.  There is always going to be another scan on the horizon. 

    I would say 'get used to it' but you don't or at least, I don't. 

    Good luck!

    Sue - Trubrith 

    Finished all my treatment in

    Finished all my treatment in June.  First ct scan is Monday.  I like the word apprehensive better than scared.  

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #18
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    Mogie said:

    Finished all my treatment in

    Finished all my treatment in June.  First ct scan is Monday.  I like the word apprehensive better than scared.  

     

    Welcome Mogie

    How about starting your own thread and introducing yourself. We'd love to get to know you. 

    Sue - Trubrit

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #19
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    cim

    Kras mutants (unspecified codons) have correlated more often with the markers correlated with cimetidine as a 5FU adjunct.

  • Easyflip
    Easyflip Member Posts: 588 Member
    #20
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    The plan

    sounds solid. Good luck to you and with the PET. "Scanxiety" gets less with the more you do but it doesn't completely go away. Make peace with whatever the outcome may be does help. The silver lining with the mutations is they seem to be more responsive to the new immunotherapy drugs. Best wishes!

    Easyflip/Richard

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