Good news, bad news

Options
JayhawkDan
JayhawkDan Member Posts: 205
in Colorectal Cancer #1
Got the results of my first CT scan since dx (stage 4, mets-liver-lymph) in February. My CEA has dropped from 44 to 1.4, so that's certainly great news and I was hopeful that I may be a candidate for surgery. The scans showed significant reduction of all tumors -- colon, liver and lymph nodes. But I'm just not a candidate for surgery, and probably won't be. So, will keep up with Folfiri and vectibix as long as it works and then move onto something else...folfox probably. Basically my oncologist said we'll try and keep me alive long enough that there's new treatments that come down the pipeline to keep this beast at bay. Still on the "chemo for the rest of my life," so just trying to take it one day at a time and keep a good attitude. I feel much better than I did before dx and try not to dwell on the 5-6 days of effects from chemo. On to the rest of my life and enjoying every moment... Dan

Comments

  • Minnesotagirl
    Minnesotagirl Member Posts: 141
    #2
    Options
    Bittersweet
    Dan,

    Well, I am glad that you had some good news in there...probably not exactly what you wanted to hear but a beginning...

    I wish you the best and I pray that new health care options will be available to all of us fighting this disease in the near future. Stay well and blessings to you from Minnesota.

    "Minnie"
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #3
    Options
    Some very good news in there
    Dan, why/what isn't operable? I've heard many people say that their oncologist said their liver isn't operable when sometimes it's just that their oncologist isn't familiar with certain procedures out there and they in fact are operable if they go to a different oncologist.
    I've been on chemo for 8 years but initially I was told my liver wasn't operable and after this and that, I was operable and my liver's been clear since early in 2005 and now only deal with lung mets. Try not to think of it as "chemo for life", instead try to think of it as "chemo until you don't have to do chemo anymore". It helps me.
    -p
  • steved
    steved Member Posts: 834 Member
    #4
    Options
    Mixed news
    Such a common experience for so many of us is this experience of mixed news. It does sound like you are getting your head around your situation and looking forward in you life once again- that in itself is a really positive step and you sound more accepting of your position. A lot of this is a mind game that you need to stay on top of and it does seem from your post you are winning on that front.

    Let us know how things progress and keep hold that hope,
    steve
  • tommycat
    tommycat Member Posts: 790 Member
    #5
    Options
    Hi
    It's hard to adapt to all the news we're bombarded with isn't it? Keep in mind tho that things are IMPROVING for you.
    Stage IV is a mean beast, but there are balancing stories of hope and strength. PhilieG is an excellent example of living with cancer.
    LIVING. with. cancer.
    I hope things continue to improve for you.
    Take care~
  • danker
    danker Member Posts: 1,276 Member
    #6
    Options
    JayhawkDan
    I love your attitude. I too enjoy life to the hilt without knowing the future. Hang in there!!!
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #7
    Options
    PhillieG said:

    Some very good news in there
    Dan, why/what isn't operable? I've heard many people say that their oncologist said their liver isn't operable when sometimes it's just that their oncologist isn't familiar with certain procedures out there and they in fact are operable if they go to a different oncologist.
    I've been on chemo for 8 years but initially I was told my liver wasn't operable and after this and that, I was operable and my liver's been clear since early in 2005 and now only deal with lung mets. Try not to think of it as "chemo for life", instead try to think of it as "chemo until you don't have to do chemo anymore". It helps me.
    -p

    My case was presented to a
    My case was presented to a team of surgeons at a nearby university and I was told I wasn't a candidate due to extensive lesions on both sides of the liver and also in lymph nodes. Even though the tumors have shown significant reduction after 4 rounds of folfiri (5 as of Wednesday...got the pump off today). I was told it makes no sense to go through the trauma of surgery if there's too much they can't get to. In the meantime, the chemo is doing it's job. And this is from my second oncologist that I've previously described as hopeful. This teaching hospital is on the verge of NCI status so they seem to have their stuff together, but who the heck knows. They had their final review a couple of months ago and should learn if they've made NCI status in June. It seems I learn more about this crap everyday, but feel like I know less. Your story is certainly encouraging, Phil, and I'll keep hope alive. And I truly appreciate your posts and insight.
  • lauragb
    lauragb Member Posts: 370 Member
    #8
    Options
    I'm glad to hear that you
    I'm glad to hear that you are having good days in spite of the hard ones from chemo. It sounds like there is good reason to be hopeful with your response to the chemo. Here's to more positive response in the future. You have a great attitude about enjoying every moment. It is all that any of us have and we need to keep that in mine to not waste those precious minutes of joy in our lives.

    In light,
    Laura
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #9
    Options
    JayhawkDan said:

    My case was presented to a
    My case was presented to a team of surgeons at a nearby university and I was told I wasn't a candidate due to extensive lesions on both sides of the liver and also in lymph nodes. Even though the tumors have shown significant reduction after 4 rounds of folfiri (5 as of Wednesday...got the pump off today). I was told it makes no sense to go through the trauma of surgery if there's too much they can't get to. In the meantime, the chemo is doing it's job. And this is from my second oncologist that I've previously described as hopeful. This teaching hospital is on the verge of NCI status so they seem to have their stuff together, but who the heck knows. They had their final review a couple of months ago and should learn if they've made NCI status in June. It seems I learn more about this crap everyday, but feel like I know less. Your story is certainly encouraging, Phil, and I'll keep hope alive. And I truly appreciate your posts and insight.

    HAI Pump Therapy
    Was the HAI Pump ever discussed?
    That can be effective when there's many mets to the liver. It's a very targeted therapy.
    Just wondering...
    -phil
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #10
    Options
    PhillieG said:

    HAI Pump Therapy
    Was the HAI Pump ever discussed?
    That can be effective when there's many mets to the liver. It's a very targeted therapy.
    Just wondering...
    -phil

    Nope...
    ...I've seen that mentioned on here, but I don't know what it is. I'll look into it.
  • Unknown
    Unknown
    #11
    Options
    This comment has been removed by the Moderator
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #12
    Options
    JayhawkDan said:

    Nope...
    ...I've seen that mentioned on here, but I don't know what it is. I'll look into it.

    Dan, I Sent a PM
    not a BM...
    :-)
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #13
    Options
    PhillieG said:

    Dan, I Sent a PM
    not a BM...
    :-)

    chuckle...(thanks for the
    chuckle...(thanks for the pm...)
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #14
    Options
    PhillieG said:

    Dan, I Sent a PM
    not a BM...
    :-)

    chuckle...(thanks for the
    chuckle...(thanks for the pm...)
  • maglets
    maglets Member Posts: 2,576 Member
    #15
    Options
    unknown said:

    This comment has been removed by the Moderator

    Dan
    those cea numbers are very very good.....

    please don't go with inoperable.....so many here have heard those words and then they just don't turn out to be true.....

    I hate to say it....sounds so trite but really one day one day....plod plod plod ....it's the very best we can do.....oh and enjoy!

    dontchjustluvcancer? hang in there Dan

    maggie
  • janie1
    janie1 Member Posts: 753 Member
    #16
    Options
    maglets said:

    Dan
    those cea numbers are very very good.....

    please don't go with inoperable.....so many here have heard those words and then they just don't turn out to be true.....

    I hate to say it....sounds so trite but really one day one day....plod plod plod ....it's the very best we can do.....oh and enjoy!

    dontchjustluvcancer? hang in there Dan

    maggie

    Hey Dan
    Cea numbers excellent. Soooooo, am I understanding this correctly? You haven't had the primary tumor in the colon removed plus the lymph nodes near the colon tumor? Is that right? Do you know if "any" of the lymph nodes are "distant" to the primary (colon) tumor.....meaning they are in another part of the body (distant from the colon tumor).
    Maybe I am way off, but if the colon tumor and the lymph nodes (as long as they are around the colon tumor) could be removed.....that would leave the liver with the only tumors.....right? And yes, that is a challenge when tumors are scattered throughout the liver, but "inoperable" is premature at this point. It depends...... so that is why I am trying to wrap my head around exactly which/where the lymph nodes are at. Many times, people will do chemo, then have the primary tumor and lymph nodes removed, then more chemo to work on the liver, and strive to get to an operable state.
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #17
    Options
    janie1 said:

    Hey Dan
    Cea numbers excellent. Soooooo, am I understanding this correctly? You haven't had the primary tumor in the colon removed plus the lymph nodes near the colon tumor? Is that right? Do you know if "any" of the lymph nodes are "distant" to the primary (colon) tumor.....meaning they are in another part of the body (distant from the colon tumor).
    Maybe I am way off, but if the colon tumor and the lymph nodes (as long as they are around the colon tumor) could be removed.....that would leave the liver with the only tumors.....right? And yes, that is a challenge when tumors are scattered throughout the liver, but "inoperable" is premature at this point. It depends...... so that is why I am trying to wrap my head around exactly which/where the lymph nodes are at. Many times, people will do chemo, then have the primary tumor and lymph nodes removed, then more chemo to work on the liver, and strive to get to an operable state.

    Yep, primary tumor is in the
    Yep, primary tumor is in the colon and haven't had it removed. Original onc said I was inoperable due to the lesions on both sides of the liver. He didn't say much, if anything, about the lymph nodes (the original visit is still a blur). It seemed his feeling was the liver was so screwed up it didn't matter. The second oncologist gave us hope that surgery may be an option, (and said she was consulting with their liver specialists) but after this last visit said the liver is still a problem, but so are tthe lymph nodes in the bowel and lung. But said my CEA numbers were great and it was good news. Ok... On the way out we visited with her PA and she, trying to comfort us (I think) said her uncle has had this for 5 years and is still alive. Reading the scan report, the tumors that were measured were approxomately half their original size, but I don't really have a number. You go through these visits wanting to get all your questions answered, but of course you think of more on the way home, or realize the conversation took a turn and you just didn't get there.. We were left wondering if it's a case of the chemo working so well with the low CEA that we'll stay that course and think about surgery later, or there's no point and just quit asking questions and run along. My wife and I really feel like we need another opinion through pm's and messages received from the great people on this board. There are options and treatments that haven't been mentioned to me and I don't know why, but I'm going to find out. A lot of what I've learned -- from you folks -- I've learned since my last visit and I've got a lot more questions now. I'm trying to make sense of all this and I appreciate anything anyone can add. Thanks, Dan
  • Varmint5
    Varmint5 Member Posts: 384 Member
    #18
    Options
    JayhawkDan said:

    Yep, primary tumor is in the
    Yep, primary tumor is in the colon and haven't had it removed. Original onc said I was inoperable due to the lesions on both sides of the liver. He didn't say much, if anything, about the lymph nodes (the original visit is still a blur). It seemed his feeling was the liver was so screwed up it didn't matter. The second oncologist gave us hope that surgery may be an option, (and said she was consulting with their liver specialists) but after this last visit said the liver is still a problem, but so are tthe lymph nodes in the bowel and lung. But said my CEA numbers were great and it was good news. Ok... On the way out we visited with her PA and she, trying to comfort us (I think) said her uncle has had this for 5 years and is still alive. Reading the scan report, the tumors that were measured were approxomately half their original size, but I don't really have a number. You go through these visits wanting to get all your questions answered, but of course you think of more on the way home, or realize the conversation took a turn and you just didn't get there.. We were left wondering if it's a case of the chemo working so well with the low CEA that we'll stay that course and think about surgery later, or there's no point and just quit asking questions and run along. My wife and I really feel like we need another opinion through pm's and messages received from the great people on this board. There are options and treatments that haven't been mentioned to me and I don't know why, but I'm going to find out. A lot of what I've learned -- from you folks -- I've learned since my last visit and I've got a lot more questions now. I'm trying to make sense of all this and I appreciate anything anyone can add. Thanks, Dan

    Just saw this...
    Hi, Dan. It truly does sound like your chemo is working very well and staying the course for now would be a reasonable thing to do. Keep a notebook with you and when you think of these questions write them down. That's what we've had to do because, sure enough, you think of them soon as you are on the road leaving.

    You say lymph nodes - do you have cancer nodules in your lung? Many people have lymph nodes around the colon tumor that are involved and removed with the colon tumor. I don't know how people find these aggressive doctors that will deal with lung nodules, liver issues, etc. but I know they are out there. We just need to find them!

    Wish you the best.

    Sandy
  • Kathy1812
    Kathy1812 Member Posts: 2
    #19
    Options
    That is almost word for word
    That is almost word for word what I have been told. I never thought I would be disappointed NOT to have surgery. I was also diagnosed with stage 4 colon cancer about 18 months ago. Chemo is keeping me stable while we wait for new treatment regimens and maybe even a cure. There is so much positive news in cancer treatments that I do think it is realistic to expect a breakthrough in our lifetime.

    I'm back on chemo after a four month break. I now look at it less as chemo for life and more as chemo till my next break. I sometimes even forget that I have a terminal disease. When it gets me down I remind myself that this is the price I pay for being alive. I think it is a bargain.

Discussion Boards