I am sooooooo confused!!!!!!

iluvmms
iluvmms Member Posts: 134 Member
edited March 2014 in Colorectal Cancer #1
I went for my 2 month post therasheres check up and the radiation oncologist and the intervential radialogist both say there is NO EVIDENCE OF DISEASE!! Yeah!! but then.........my medical oncologist says he does not believe that . He says I am in remission, not sure what the difference is. The first two docs want me to take a holiday from all treatments and Onc wants me to restart chemo. I had CT, PET and MRI that show no activity and CEA of .8, not sure whom to listen to. They (the docs) do not get along on anything. I kinda feel like I am playing dodge ball and I am in the middle. I want to be happy, but I am just confused! I go to surgeon in Tampa on Wednesday for his take on things, to revisit surgery. They first thought I had a spot on the left lobe as well as right but now they are saying it is not. I am just overwhelmed!! ANy advice????

Christy

Comments

  • lcarper2
    lcarper2 Member Posts: 635 Member
    #2
    for what
    why are they going to do it if there is nothing there....
  • iluvmms
    iluvmms Member Posts: 134 Member
    #3
    lcarper2 said:

    for what
    why are they going to do it if there is nothing there....

    to remove the dead areas
    to remove the dead areas where there was tumor????
  • PGLGreg
    PGLGreg Member Posts: 731
    #4
    Chemo can be recommended
    Chemo can be recommended when there is no evidence of disease. I had no evidence of disease after surgery for rectal cancer, but both chemo and radiation are still standard in that situation (and I had both). There can be disease even if there's no evidence of it.

    --Greg
  • geotina
    geotina Member Posts: 2,111 Member
    #5
    Christy
    The SirSpheres appear to have worked, that is wonderful. They see no disease on scans. Excactly why is the oncologist wanting to follow up with chemo? Is it just an insurance policy for any stray cells? If the answer is yes, go of the insurance policy. I'm not sure how extensive your liver mets were. What kind of chemo does he want to do and for how long? If it is a chemo light, such as just 5FU, or something, then the side effects could be very minimal. You said you are going to the surgeon on Wednesday. Is that for a possible liver resection? If so that is great news that a resection could be in your future.

    When you get this all figured out, send them a bill, standard charge, $39.95.

    Let us know what happens - Tina
  • iluvmms
    iluvmms Member Posts: 134 Member
    #6
    geotina said:

    Christy
    The SirSpheres appear to have worked, that is wonderful. They see no disease on scans. Excactly why is the oncologist wanting to follow up with chemo? Is it just an insurance policy for any stray cells? If the answer is yes, go of the insurance policy. I'm not sure how extensive your liver mets were. What kind of chemo does he want to do and for how long? If it is a chemo light, such as just 5FU, or something, then the side effects could be very minimal. You said you are going to the surgeon on Wednesday. Is that for a possible liver resection? If so that is great news that a resection could be in your future.

    When you get this all figured out, send them a bill, standard charge, $39.95.

    Let us know what happens - Tina

    He wants to do 3months of
    He wants to do 3months of 5fu with oxi. Its the OXI thats gets me. My feet are still burning and tingling. I just wish they would agree. They really have had it out.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #7
    iluvmms said:

    He wants to do 3months of
    He wants to do 3months of 5fu with oxi. Its the OXI thats gets me. My feet are still burning and tingling. I just wish they would agree. They really have had it out.

    no way, no oxi!
    Hi Christy,

    I am really surprised your onc wants you to take more oxi, if there is no current evidence of disease. Even with his words of you being in remission, I can't see why he'd want to give you more oxi. I can understand 5FU or Xeloda as "maintenance" or cleanup of microscopic cells (which there could be even if they're not visible on scans), but I cannot understand why an oncologist would recommend a patient with no evidence of disease currently to take a drug as toxic and with such awful and with possibly permanent side effects as oxaliplatin. The platinum in oxaliplatin builds up over time. Your body needs awhile to expel its effects. I would not only get the opinion from your surgeon, but I would seek out another opinion from another medical oncologist & preferably one at an NCI cancer center- not anyone affiliated with your same med. onc.

    Take care and keep us filled in on what you hear.

    Hugs,
    Lisa
  • iluvmms
    iluvmms Member Posts: 134 Member
    #8
    lisa42 said:

    no way, no oxi!
    Hi Christy,

    I am really surprised your onc wants you to take more oxi, if there is no current evidence of disease. Even with his words of you being in remission, I can't see why he'd want to give you more oxi. I can understand 5FU or Xeloda as "maintenance" or cleanup of microscopic cells (which there could be even if they're not visible on scans), but I cannot understand why an oncologist would recommend a patient with no evidence of disease currently to take a drug as toxic and with such awful and with possibly permanent side effects as oxaliplatin. The platinum in oxaliplatin builds up over time. Your body needs awhile to expel its effects. I would not only get the opinion from your surgeon, but I would seek out another opinion from another medical oncologist & preferably one at an NCI cancer center- not anyone affiliated with your same med. onc.

    Take care and keep us filled in on what you hear.

    Hugs,
    Lisa

    I am trying to get in with a
    I am trying to get in with a new Med Onc at Moffitt Cancer Center now, but I am not sure how long it will take to get an appt. Moffitt is where the surgeon is, as well as the rad onc and Int rad.
  • geotina
    geotina Member Posts: 2,111 Member
    #9
    OXI
    How much Oxy have you had? Like I said I can understand the "clean up/mop up" chemo but Oxi again, with no evidence of disease, like Lisa42, I would question that. If you have had less than the standard 12 maybe that is where he is comming from, to complete the 12. Tina
  • zenmonk
    zenmonk Member Posts: 198
    #10
    oxi
    There are many reasons why the would continue with the oxi at this point. Relapse rates have been shown to be lower with adjuctive oxi treatment. Also these chemo drugs work in conjuction with each other sometimes. Even though you dont have a tumor you can still have cancer cells roaming. Oxi stops these cells from dividing. I had 4 months of adjunctive oxi treatment when there was ned. This is not uncommon at all.
  • geotina
    geotina Member Posts: 2,111 Member
    #11
    zenmonk said:

    oxi
    There are many reasons why the would continue with the oxi at this point. Relapse rates have been shown to be lower with adjuctive oxi treatment. Also these chemo drugs work in conjuction with each other sometimes. Even though you dont have a tumor you can still have cancer cells roaming. Oxi stops these cells from dividing. I had 4 months of adjunctive oxi treatment when there was ned. This is not uncommon at all.

    Zen
    I didn't know that. Thanks for the info. - Tina
  • sfmarie
    sfmarie Member Posts: 602
    #12
    Christy
    That must be disheartening to learn that if you are NED they are suggesting chemo. While I have no experience to draw from, I can only say, why not take the insurance. If it were me, I would hate to be at a place where I thought, If only I did the chemo. Congrats on NED! I am very happy for you.
  • ittapp
    ittapp Member Posts: 383 Member
    #13
    Hey Christy, I have talked
    Hey Christy, I have talked with you about your Oncologist before and I am of the opinion that he is in a pissing contest with the Interventional Radiologist. I think a second opinion and if you can't get in in a while then ask if you can send scans over with your history to give you an opinion. Why not just avastan, that is what my Dr. said would be my maint. chemo if I ever got to that point. If you had issues with oxi and still have lingering side effects, oxt would be the last thing you should do in my opinion. Please get someone else to give you an opinion. Your Onc. did not even want you to do the Sir Spheres which has given you Ned status. So much for his opinion. Patti

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