Cancer of undetermined Origin

barb0305
barb0305 Member Posts: 10
in Caregivers #1
Ok, so a week has past since the PET scan and the follow up visit with the Dr was this morning. Here is where we stand. The PET scan did not show anything but he does have some lesions on his back which are malignant. Doc says the cancer has spread to his back bone but they can't determine where the cancer originated.

I don't even know what to think at this point. It seems so strange that they can't find where it is coming from even though it has spread. Since the cancer has spread, that puts us at a lower survial rate. The doctor would not tell us what we were looking at timewise just that it has a 30%-40% rate.

Tom goes for a port tomorrow and will start chemo on Thursday.
The thought of starting Chemo so soon scares the living crap out of me. Are we doing the right thing by pouncing on this or should we consider a second opinion?

What can we expect from Chemo? Are there things we can do to make it go smoother?

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    making it go smoother
    My husband did remarkably well with what was supposed to be a real kicker of a chemo treatment.

    The main thing is to follow the advice of the nurses and doctors. Jim never failed to take pre-medication to allow the shots that prevented/minimized nausea. He always took the Benadryl they advised before we left the house. Fortunately, Jim had almost no nausea during his treatment and the staff was amazed.

    Jim credited determination to finish the treatment and following the advice of the staff.
  • AMACAR63
    AMACAR63 Member Posts: 18
    #3
    chemo
    hello barb, i am still relatively new at this myself but i can tell you to push the fluids. we were not aware how important this was. hubby ended up in the hospital for a week because the cistplatin got ahold of his kidneys along with the severe diarrhea. he makes sure he drinks 5 quarts of gatorade a day in addition to anything else.if there are things you don't understand, ask questions. still not understanding or not satisfied.....ask more questions. take paper and pen to write down notes and questions you may have. it is very overwhelming when your there and it seems as though everything is coming to you at once. i am sure that the others have more sage advice than me on a lot of this. i am still learning.


    laughter is the best medicine

    mandy in tn
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    Barb:
    Do the doctors know what kind of cancer he has? You mention that it is undetermined but the pathology should be able to tell them. If he is to start chemo, how will they know what drugs to give him? Each chemo drug comes with its own set of side effects. My hubby has Stage IV Colorectal and the first line of treatment, Folfox, has significantly different side effects than the second line, Camptosar.

    If he is able to start Chemo on Thursday, do it, waiting serves no purpose except to let the cancer spread. You can still get a second opinion while undergoing treatment, people do it all the time.

    You can do things to make it go smoother but you need to know exactly the drugs he will be getting so you can be informed and ready for potential side effects.

    From your post I am assuming here that it is in his bone, have they discussed any type of radiation treatment? As an example, for colorectal cancer, if it has metastized to the bone, it is often treated with radiation in addition to chemo.

    Although you are new to all this stuff, do not hesitate to ask a lot of questions and write things down.

    Take care - Tina
  • barb0305
    barb0305 Member Posts: 10
    #5
    geotina said:

    Barb:
    Do the doctors know what kind of cancer he has? You mention that it is undetermined but the pathology should be able to tell them. If he is to start chemo, how will they know what drugs to give him? Each chemo drug comes with its own set of side effects. My hubby has Stage IV Colorectal and the first line of treatment, Folfox, has significantly different side effects than the second line, Camptosar.

    If he is able to start Chemo on Thursday, do it, waiting serves no purpose except to let the cancer spread. You can still get a second opinion while undergoing treatment, people do it all the time.

    You can do things to make it go smoother but you need to know exactly the drugs he will be getting so you can be informed and ready for potential side effects.

    From your post I am assuming here that it is in his bone, have they discussed any type of radiation treatment? As an example, for colorectal cancer, if it has metastized to the bone, it is often treated with radiation in addition to chemo.

    Although you are new to all this stuff, do not hesitate to ask a lot of questions and write things down.

    Take care - Tina

    test after test
    Based on what the Dr told us today, the PET scan didnt show anything. So they can't determine where the cancer orginated. So no, we don't know what type of cancer he has. They are calling it "Carcinoma of Unknown Primary (CUP) which really leaves us in the dark on how to treat it.

    Radiation is out since they can determine where it started. He did say if the pain got to intense they could do radiation to try and releive the pain but that is about it.

    I am not sure which drugs they will use first. He said there have been trials and research for this type of cancer and would start with the drugs that worked the best in those trials and see if there is any improvement. If not, they go to the next round of drugs and so on.

    It is good to know that we should not worry about starting the Chemo while working on a second opinion. That is what I was thinking but wasnt sure.

    I guess tomorrow I will call them and ask for the names of the drugs they will begin using and do a little research on them.

    Any other thoughts or ideas please let me know. At this point I feel so lost in all this!
    Thanks
    Melissa

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