Feeling abandoned

apache4
apache4 Member Posts: 272 Member
edited March 2014 in Colorectal Cancer #1
Has anyone had experience after treatment stops for the time being? The next thing we are doing is a PET scan, but I had to ask about any labs that would be done to monitor what might be going on. I may be jumping the gun, but I was told the labs are not automatic when you are not in active treatment. I asked my onc. how I would know if anything was going on and he cited nausea. I would like to start a second line of treatment before it becomes totally out of control. That is my concern. The trip to MD Anderson for a consultation is out as they don't accept my insurance. Actually, what would be the point as I have what I have. Anyway, just a little down thinking of this. (Stage IV with innumerable liver mets, dx. 7/06...16 treatments of 5-fu, etc. after surgery.) Thanks for any replies.

Comments

  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #2
    Wish I had an answer for you, but unfortunately do not. My husband also has inoperable mets so far. The number of them is under question. We've been told 3, then 6or 7, then 5, then back to 3. We are going back tomorrow nite for another consult with a surgeon as we keep getting confusing opinions as to what the next step might be. He is still under treatment, they show stable now after they shrunk quite a bit after 8 treatments. We were under the impression that there was no "end of treatment" as long as mets appeared on ct or another option, rfa, resection etc was done. A PET is not an option for him so we were told, as they are too small to supposedly to show up on the PET, but not on the ct . I'm actually surprised that you aren't under active treatment now even if stable with the same regimen you were receiving. I thought they only went to second line if it progressed but continued the treatment you were on as long as stable? I plan on asking at the next treatment which is wed. If I find out anything of value, I'll be sure to let you know. Good luck & God Bless, Diane
  • mwomack
    mwomack Member Posts: 78
    #3
    My husband is Stage IIIc with his 2nd recurrence (3 pelvic mets inoperable). He is on a chemo break right now, and gets his CEA taken every 4 weeks and CT scans every 3 months. He was put on a chemo break for 3 months, and the scans and CEA were good so he gets another 3 month break. Originally, he told him he had to go back on chemo in 6 months regardless, but he has been known to change his mind.

    After finishing the original chemo, he was told that he would check his CEA every 3 months, but he has never gotten past the 2 months between tests. He checks it 1 month after finishing chemo and then 2 months after that. If all is well, he would have been put on 3 month intervals.

    CEA has been a good indicator for my husband. Not big numbers but steady rises.

    I don't believe I would be happy with no labs either.

    MA
  • pink05
    pink05 Member Posts: 550
    #4
    Are you just on a chemo break right now? I'm not sure how often they do scans/labwork when someone is on a chemo break, but you definitely should be monitored. Sounds like you are not entirely happy with your onc. I would try to get another opinion if you aren't comfortable with what is going on.

    God bless,

    -Lee-
  • Peacocks
    Peacocks Member Posts: 1
    #5
    hopefulone said:

    Wish I had an answer for you, but unfortunately do not. My husband also has inoperable mets so far. The number of them is under question. We've been told 3, then 6or 7, then 5, then back to 3. We are going back tomorrow nite for another consult with a surgeon as we keep getting confusing opinions as to what the next step might be. He is still under treatment, they show stable now after they shrunk quite a bit after 8 treatments. We were under the impression that there was no "end of treatment" as long as mets appeared on ct or another option, rfa, resection etc was done. A PET is not an option for him so we were told, as they are too small to supposedly to show up on the PET, but not on the ct . I'm actually surprised that you aren't under active treatment now even if stable with the same regimen you were receiving. I thought they only went to second line if it progressed but continued the treatment you were on as long as stable? I plan on asking at the next treatment which is wed. If I find out anything of value, I'll be sure to let you know. Good luck & God Bless, Diane

    I don't have any answers either. We do CT scans every 2 months. We are on break from chemo. My husband Stage IV, liver and lung mets. Too many nodules to count in lungs. Liver was resection two years ago. He did 11 mths of 5 kinds of chemo...nodules still growing. Not sure what is next. Never get straight answer about CEA levels. God bless, Bert
  • apache4
    apache4 Member Posts: 272 Member
    #6
    pink05 said:

    Are you just on a chemo break right now? I'm not sure how often they do scans/labwork when someone is on a chemo break, but you definitely should be monitored. Sounds like you are not entirely happy with your onc. I would try to get another opinion if you aren't comfortable with what is going on.

    God bless,

    -Lee-

    I think that's my problem...I don't know if I'm on a "break" or not. He spoke about a trial they were doing there which was a possibility, but not when or what were the signs that would start a new regimen. Maybe, I am not asking the right questions.
  • apache4
    apache4 Member Posts: 272 Member
    #7
    hopefulone said:

    Wish I had an answer for you, but unfortunately do not. My husband also has inoperable mets so far. The number of them is under question. We've been told 3, then 6or 7, then 5, then back to 3. We are going back tomorrow nite for another consult with a surgeon as we keep getting confusing opinions as to what the next step might be. He is still under treatment, they show stable now after they shrunk quite a bit after 8 treatments. We were under the impression that there was no "end of treatment" as long as mets appeared on ct or another option, rfa, resection etc was done. A PET is not an option for him so we were told, as they are too small to supposedly to show up on the PET, but not on the ct . I'm actually surprised that you aren't under active treatment now even if stable with the same regimen you were receiving. I thought they only went to second line if it progressed but continued the treatment you were on as long as stable? I plan on asking at the next treatment which is wed. If I find out anything of value, I'll be sure to let you know. Good luck & God Bless, Diane

    The way I understand it is that the first regimen had to be stopped as my platelet count was not coming back even after three weeks and also white cells continue to be low. My largest mets in liver is supposed to be 3cm (too many to count as to actual sizes and how many)and the way I understand a PET scan...size didn't make a difference...it is to see how many "light up" as active cancer. I could be wrong. I also thought that you went back to the same treatment after the body stabilized for awhile. I think I need more info! I am beginning to wonder if they are "writing me off" because of insurance or something...I am getting paranoid.
  • changing
    changing Member Posts: 134
    #8
    apache4 said:

    I think that's my problem...I don't know if I'm on a "break" or not. He spoke about a trial they were doing there which was a possibility, but not when or what were the signs that would start a new regimen. Maybe, I am not asking the right questions.

    Hey, you're never alone! I do know what you mean...when nothing is being done...you fear things might get out of control. Think we all have that same feeling as that's how our cancer went to 3's and 4's ...we didin't know there was a problem however you now have regular tests of some sort going on and prayerfully that will be helpfu. Right now you have all the days between the tests and treatments, so please go and enjoy every second you have with family, friends and even quiet times for yourself. I'm praying earnestly for you...to know God and to experience peace on your journey.
  • apache4
    apache4 Member Posts: 272 Member
    #9
    changing said:

    Hey, you're never alone! I do know what you mean...when nothing is being done...you fear things might get out of control. Think we all have that same feeling as that's how our cancer went to 3's and 4's ...we didin't know there was a problem however you now have regular tests of some sort going on and prayerfully that will be helpfu. Right now you have all the days between the tests and treatments, so please go and enjoy every second you have with family, friends and even quiet times for yourself. I'm praying earnestly for you...to know God and to experience peace on your journey.

    I think that I figured out what might have happened when speaking with my onc. I was kind of jumping around with ?'s about MD Anderson, and PET scan, etc. and never got a firm answer on how often we would do labs to monitor things. I will call tomorrow and get an appt. set up for that so I don't worry so much about nothing being done. I do have to have my port flushed once a month and that is scheduled. I am glad I'm not the only one feeling like this. Thanks. I am enjoying things...my favorite hymn is In the Garden as that is where I spend lots of time.
  • kerry
    kerry Member Posts: 1,313 Member
    #10
    Apache4,

    Please email me here at this site. I know for a fact that MD Anderson accepts almost all and any insurance and I can certainly help you find out for sure if they accept yours or not.

    If you can get a second opinion - that is the place to do it!

    Kerry
  • changing
    changing Member Posts: 134
    #11
    apache4 said:

    I think that I figured out what might have happened when speaking with my onc. I was kind of jumping around with ?'s about MD Anderson, and PET scan, etc. and never got a firm answer on how often we would do labs to monitor things. I will call tomorrow and get an appt. set up for that so I don't worry so much about nothing being done. I do have to have my port flushed once a month and that is scheduled. I am glad I'm not the only one feeling like this. Thanks. I am enjoying things...my favorite hymn is In the Garden as that is where I spend lots of time.

    Great Hymn! I love my garden too and spent lots of time there as well:) Take care, praying for you!

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