Bone mets?

rrob
rrob Member Posts: 158
in Colorectal Cancer #1
Middle of the night and I'm scared of course. My onc finally called late this afternoon to let me know my lung mets were about the same but there were three suspected small bone mets. Said we would test for Kras mutation and see about Erbitux but it will be after thanksgiving. Now I'm scared and don't know what to think. Any information, ideas, suggestions?

Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #2
    Did they make a Gammagraphy ?
    is the most reliable way to confirm what hapends on bones.
    I would ask for one before to arrive to any conclusion!.
    Hope it helps ! Hugs!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    Rob....
    The name of the machine escapes me now, but there is a "bone scan" they can give you to test you.

    What they do is give you an injection similar to that of a PET scan. You have to wait for 2 hours and some change for it to circulate through your system and then they take you and put you up on the table.

    You lay flat and this scanner passes all over your body - takes about 45 minutes to an hour and then it's done.

    No pain to speak of, other than rigging an IV to give you the solution. And then your onc can review and go over the results with you.

    Testing for KRAS is always a good idea and you'll know if you are 'wild' or 'mutant.' If you are wild - you can do Erbitux or Vectibix....if you're mutant, then they strongly recommend against giving this to you, due to the severity of the toxixicty with the drugs and very relevant since if you are mutant, it's been proven that the drugs won't have the desired effect you are looking for.

    This will be good news for you to know. I'm glad the lung mets are stable and let's hope that there are no bone mets...but I would pursue the test to verify and for your peace of mind. You've got enough to worry about, besides guessing....better to know...and know now.

    And T'giving is here, Rob....so none of this can be changed today or next week - what is, already is, you know?

    Don't let your apprehensions spoil this holiday for you - plenty of time to get back after it when the holidays come sliding to an end.

    You hang in there!

    -Craig
  • rrob
    rrob Member Posts: 158
    #4
    Sundanceh said:

    Rob....
    The name of the machine escapes me now, but there is a "bone scan" they can give you to test you.

    What they do is give you an injection similar to that of a PET scan. You have to wait for 2 hours and some change for it to circulate through your system and then they take you and put you up on the table.

    You lay flat and this scanner passes all over your body - takes about 45 minutes to an hour and then it's done.

    No pain to speak of, other than rigging an IV to give you the solution. And then your onc can review and go over the results with you.

    Testing for KRAS is always a good idea and you'll know if you are 'wild' or 'mutant.' If you are wild - you can do Erbitux or Vectibix....if you're mutant, then they strongly recommend against giving this to you, due to the severity of the toxixicty with the drugs and very relevant since if you are mutant, it's been proven that the drugs won't have the desired effect you are looking for.

    This will be good news for you to know. I'm glad the lung mets are stable and let's hope that there are no bone mets...but I would pursue the test to verify and for your peace of mind. You've got enough to worry about, besides guessing....better to know...and know now.

    And T'giving is here, Rob....so none of this can be changed today or next week - what is, already is, you know?

    Don't let your apprehensions spoil this holiday for you - plenty of time to get back after it when the holidays come sliding to an end.

    You hang in there!

    -Craig

    Thanks
    Thanks for the information. I tried to talk to my dr today but he was out. I spoke with his PA instead. Big mistake. He explained that generically speaking, stage IV has a prognosis of two years. I couldn't believe he would tell someone that over the phone and it was obvious he hadn't even looked at my file since I was diagnosed as Stage IV over four years ago. I live west of Fort Worth and am thinking of changing doctors. Craig, didn't you change to UT Southwestern? Do you have a recommendation?

    Thanks again.

    Rebecca
  • Joy1216
    Joy1216 Member Posts: 290 Member
    #5
    Sundanceh said:

    Rob....
    The name of the machine escapes me now, but there is a "bone scan" they can give you to test you.

    What they do is give you an injection similar to that of a PET scan. You have to wait for 2 hours and some change for it to circulate through your system and then they take you and put you up on the table.

    You lay flat and this scanner passes all over your body - takes about 45 minutes to an hour and then it's done.

    No pain to speak of, other than rigging an IV to give you the solution. And then your onc can review and go over the results with you.

    Testing for KRAS is always a good idea and you'll know if you are 'wild' or 'mutant.' If you are wild - you can do Erbitux or Vectibix....if you're mutant, then they strongly recommend against giving this to you, due to the severity of the toxixicty with the drugs and very relevant since if you are mutant, it's been proven that the drugs won't have the desired effect you are looking for.

    This will be good news for you to know. I'm glad the lung mets are stable and let's hope that there are no bone mets...but I would pursue the test to verify and for your peace of mind. You've got enough to worry about, besides guessing....better to know...and know now.

    And T'giving is here, Rob....so none of this can be changed today or next week - what is, already is, you know?

    Don't let your apprehensions spoil this holiday for you - plenty of time to get back after it when the holidays come sliding to an end.

    You hang in there!

    -Craig

    Bone Scan
    This spring I had one of those bone scans that you mentioned. They just called it a nuclear bone scan, but the report called it a single phase bone scan. The hardest part was drinking all that liquid in a short period of time. The injection of the radioactive tracer didn't hurt at all. I take it back. The hardest part was holding in the pee during the scan!
    Joy
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #6
    rrob said:

    Thanks
    Thanks for the information. I tried to talk to my dr today but he was out. I spoke with his PA instead. Big mistake. He explained that generically speaking, stage IV has a prognosis of two years. I couldn't believe he would tell someone that over the phone and it was obvious he hadn't even looked at my file since I was diagnosed as Stage IV over four years ago. I live west of Fort Worth and am thinking of changing doctors. Craig, didn't you change to UT Southwestern? Do you have a recommendation?

    Thanks again.

    Rebecca

    Yes, I made the change to UTSW and have been there for 2.5 years now - very happy with all my medical team there - getting good care - and credit my current status to the folks I do business with there:)

    If you would like, I can send you the name of my onc and the phone number. Gather up your records and you can arrange with them to drop them off, so they can review them first. Then, on your appointment, you'll have something to talk about.

    We all know stage IV has a bad prognosis - where did the guy learn that one? In medical school?

    I'm at the 7.5 year mark of my cancer fight - 4 of those years as a stage IV.

    Still here, still kicking a$$ anywhere I can. I think making the move here would be in your best interest. They have a big campus and great facilities - we've been promoted to an NCI cancer center, so they've got the best of everything. And their hospitals are considered some of the best in the nation.

    All my care is there now.....surgical oncologist - thoracic surgeon - radiation oncologist - colorectal surgeon....even an ENT.

    I don't think you will go wrong - it could be a game changer - it was for me.

    PM me if you want the name and number. I would be glad to help you.

    Hang in there, Rebecca - the calvary still does come riding up over the hill:)

    -Craig

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