Dealing with long term treatment

tennislover
tennislover Member Posts: 64
edited March 2014 in Colorectal Cancer #1
Hello all....my happiness from being told I am officially in remission faded quickly with the doctor telling me that my treatments will still be given as often and for an unspecified amount of time. She said that she cant tell me how long I will have to do treatments. I have to admit that i am a complete mess about this. I am grateful to be in remission but the thought of having to do this "forever" is pretty depressing. I feel very depressed and emotional and I wish I could just be happy for the good news. I would love to hear from anyone with similar issues and how do you deal with it? The Dr did tell me that i will be on the same meds and the same dosage as I was before so nothing will change. Help! I need to be able to get through this but all I want to do is run the other way or hide. Can anyone relate?

Comments

  • musiclover
    musiclover Member Posts: 242
    #2
    First, congrats for being in remission. I can only pray that my friend Mark will hear those words someday. From what the doctor is saying, that is looking unlikely.

    I wonder how Mark will tolerate being on chemo forever as well. The fatigue I've asked folks about on this site is common when one is on chemo. How about if one is on chemo indefinitly - they have cronic fatigue to look forward to. He's adjusting to each hurdle well, incredibly. He's gotta be sick of being sick.

    Question - what are the chances of getting another opinion? Chemo for you is to prevent cancer from returning? That sucks that you need to stay on it, to put it mildly. I hope you can get some feedback from others on this board who are in the same boat.

    Were you stage IV with mets? Again, I'm happy for you that you are in remission.
  • pink05
    pink05 Member Posts: 550
    #3
    Hi,

    My dad's onc told us initially that my dad's condition is a chronic condition and that he would have to be on chemo indefinitely with a month break here and there. That was after my dad's liver tumors shrank 70%. But when my dad became NED, the onc gave him the option of stopping treatment. He said that since there wasn't any sign of the disease, that the chemo really wouldn't be doing anything. He did say that the cancer will probably come back, but that we will deal with it then. When my dad stopped, he had already completed 6 months of the chemo. How many cycles have you had? The standard is to finish out at least 12 cycles of the chemo (or about 6 months), usually for those with stages II or III. I was listening to a program a couple months ago that was saying for stage IVs, there really is no "standard" for when to stop the chemo. Basically, doctors don't really know what to do in a situation where someone who is stage IV becomes NED. Some oncs recommend to continue the chemo for as long as one can tolerate it. Others recommend stopping once becoming NED. In your case, maybe your onc is being cautious. Did she tell you why? In any case, it really is up to you to ultimately decide what is right for you. I would ask your onc as many questions as possible about this and research it as much as you can. Good luck, and God bless,

    -Lee-
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #4
    Hi Heather -

    This long term treatment is a sobering concept to try and deal with - I know. My oncologist prepared me for the "fact" that in all liklihood I would be on and off some form of chemo for the rest of my life. So, here's what's happened.

    My liver met disappeared after 2 cycles of Xeloda/oxaliplatin/Avastin. We continued to push on with the chemo and when it came time for the 6th cycle in Nov 2005, my oncologist told me that almost regardless of what my December scan showed, we would take a chemo break for a couple of months or so after my 6th cycle. Upcoming winter seemed like a great time to give the oxaliplatin a break. My December scans were clean, so we scheduled another set in February and they were clean too. I have had 4 PET and CT scans and 2 liver MRI's since then and all have been clean. So, at this point, I am no longer "taking a break", but just being followed very closely - if something shows up again it will be back to chemo, but for now I am off it.

    Your oncologist is probably being appropriately conservative - probably if you remain NED, you'll get a break which may get prolonged with continued good scans.

    I wish you all the best - try and take the treatments one at a time and look forward to the next clean scan.

    Betsy
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    Oh, dear warrior! What a let down. But, as all have said, maybe she is just being cautious, and as time progresses, a 'break' will become a long period! I have nothing to add but my arms around you.

    Hugs, Kathi
  • only54
    only54 Member Posts: 15 Member
    #6
    Dear tennislover - I know exactly how you feel. I am pretty much in the same situation. But they have not used the words remisssion or even stable for me. I am on Xeloda after 12 chemo cycles. I asked the doctor last week how long I would be taking the Xeloda and he said probably forever. He said we will treat this like a chronic disease like diabetes. I wanted another scan just to be sure things are staying the same but doctor says it is not necessary. Mine was first found in the lymph nodes in my neck so doctor will just continue to check that. My husband says I just need to trust my body. I am feeling really good right now. Just some tingling in fingers and toes - but gained my weight back have good energy etc. I just need to keep immune system strong so it will kill whatever is left. I have been singing to myself when I walk and vacuum etc. "Thank you God I am well - over and over and over again". I know it is corny but it beats the alternative. I am one of those people who has unresectable disease. I am concentrating on how I feel today. It is not easy - I have always hedged my bets so I won't be disappointed if things don't work out exactly right. But today I am determined to be strong and to believe in the power of healing. I don't pretend to be able to do it every day and every minute but I try and I do cry.
    I understand and struggle just like you do.
    Keep up the fight.

    Rita
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #7
    only54 said:

    Dear tennislover - I know exactly how you feel. I am pretty much in the same situation. But they have not used the words remisssion or even stable for me. I am on Xeloda after 12 chemo cycles. I asked the doctor last week how long I would be taking the Xeloda and he said probably forever. He said we will treat this like a chronic disease like diabetes. I wanted another scan just to be sure things are staying the same but doctor says it is not necessary. Mine was first found in the lymph nodes in my neck so doctor will just continue to check that. My husband says I just need to trust my body. I am feeling really good right now. Just some tingling in fingers and toes - but gained my weight back have good energy etc. I just need to keep immune system strong so it will kill whatever is left. I have been singing to myself when I walk and vacuum etc. "Thank you God I am well - over and over and over again". I know it is corny but it beats the alternative. I am one of those people who has unresectable disease. I am concentrating on how I feel today. It is not easy - I have always hedged my bets so I won't be disappointed if things don't work out exactly right. But today I am determined to be strong and to believe in the power of healing. I don't pretend to be able to do it every day and every minute but I try and I do cry.
    I understand and struggle just like you do.
    Keep up the fight.

    Rita

    Rita,

    I don't think it's corny at all!!!!

    an attitude of gratitude goes a loooong way in the healing arts. :-)

    peace, emily
  • kerry
    kerry Member Posts: 1,313 Member
    #8
    Oh my can I relate!! I have been on and off (mostly on) chemo for 4 years now. My oncologist also said we would treat this as a chronic disease and either stay on a maintenance program or full blown chemo. Well, to say the least, I'm getting pretty sick and tired of the chemo.

    It is not the way I would want it, but heck, I'm here and every other week I feel good, and I can still see my children and smell the fresh air. So, I guess this is what we do to survive a while longer.

    I know it is depressing to hear, but maybe you'll stay NED for a long long time and not have any more chemo!!!

    I am wishing you the very best.

    Kerry
  • nanuk
    nanuk Member Posts: 1,358 Member
    #9
    a lot of people go on "forever" like this..the idea is to survive long enough to take advantage of the ultimate "cure"...and therin lies an admirable goal.. Bud

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