Stage 4 Colon Cancer

middlechild
middlechild Member Posts: 7
edited March 2014 in Colorectal Cancer #1
My father refuses to take his medications, he is not able to eat without throwing up, he has constant phlegm and he is hardly taking any liquids. I am scared. He was given a suppository for nausea so that he could keep food down, but he only takes very little food perhaps 2 mini bites of whatever we can convince him to try. He refused to go to his first appt with his oncologist. Now he says he will stop his meds. I know it's terminal cancer, but so far we haven't been told how long he has. Can we have an idea by the way he is responding? please help

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Don't know what to advise
    He's got to have to want to do this, you can lead a horse to water...
    Has he been told it's terminal or are you just assuming that it is because it's stage IV?
    My remedy for nausea and appetite is marijuana, it helps with both and with overall attitude.
    I think how long your Dad has is up to your Dad but I may be totally wrong, I'm just going on what you've told me.
    I hope he changes his mind about this
    -phil
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Phil is right - he has to
    Phil is right - he has to want to engage in his treatment because no one can do it for him.

    I believe it is an invidual's right to make the decision on his/her own life and whether they decide to fight the illness or succumb to it. Nobody has a right to make that decision for us. And if you have to force all of the actions necessary from feeding to taking medicines, to going to doctors etc.etc., you will get real tired and frustrated very quickly.

    You can highly encourage him to please go ahead and try it first and then if he decides he can't go through with it, then...you may have to honor his wishes - this is a very hard fight and you've got to want it or it will not work.

    What concerns me is the lack of food intake for him. If he won't eat much, you might see if he could tolerate Ensure or Boost, they are supplement drinks that might help.

    Otherwise, when his nutrition gets too low, you could find yourself in a hospital with him being fed through an IV for sustenance and/or dehydration. That would just make the situation more difficult to work through.

    I'm sorry you are having to go through this - wish I had a magic pill for you, but I do not.

    -Craig
  • lisa42
    lisa42 Member Posts: 3,625 Member
    my thoughts & hope for you and your father
    Hi,

    As Phil and Craig already expressed, I'm also sorry to hear you're going through this. How very frustrating it must be to watch your father refuse to eat or take his meds. What I'm wondering is... do you think your dad is being this way because he's convinced he's going to die, so "what's the use??!"
    If that is possibly the case, then perhaps his will to eat and fight this would change if he could be convinced that he can still fight this and he may not be dying after all. Of course, I don't know his specific situation, but you and he both need to know that being a stage IV patient even though it's technically still referred to as "terminal" (boy, do I hate that word!), does NOT neccesarily mean that he's about to die. He will bring that upon himself by refusing his food and meds much sooner than it would ever happen otherwise! There are many, MANY people who write on this board who are stage IV patients (myself included) who are doing quite well years after their diagnosis.

    My own story- I was diagnosed in August 2007 as stage IV rectal cancer with metastasis (tumors) in my liver and both lungs. I was also told I was not a surgical candidate because my tumors were too widespread (12 visible tumors in all parts of my liver and many, many tumors in all parts of both lungs). I later found out from my husband that the oncologist told him I easily could have died in another 4 months if I hadn't come in and started chemo then and he didn't know how much he could do, but he'd certainly try (fortunately, I was never told that and my oncologist had a very upbeat demeanor with me, which made all the difference in the world to ME in how I felt about my situation and my desire to have a fighting spirit). Anyhow, I amazed all my doctors- after just having chemo three times, most of my tumors shrank and several even disappeared. After finishing ten Folfox/Avastin chemo sessions, my PET scan showed NOTHING in my liver or lungs anymore (some did still show up on the CT, but not as active on the PET). It was then I started on radiation to shrink the rectal tumor and prepare it for surgery. I remember asking my radiation oncologist, "If the radiation makes my rectal tumor go completely away, will I still need the colorectal surgery?" She just looked at me kind of sadly and replied, "You know we're not expecting this tumor to go away- we're just shrinking it and softening it to prepare it for surgery." Well, six weeks of radiation shrunk it completely away and I never even needed the rectal resection. I have since found out that it is more common than I was lead to believe then that people's tumors shrink away with radiation. Anyhow- although many people still would have the colon/rectal resection surgery at that point, my surgeon and I decided together that I would not (we continue to watch that area carefully- still all clear at this point).
    At that time, I still had three tumors in my liver, but they no longer showed up as active on the PET scan and the disease was then controlled enough that I could go through a liver resection (the drs. would never have thought at the beginning that I would have ever been able to get to the point of being considered for liver surgery). I had the liver resection in May 2007 and recovered pretty well from it. Unfortunately, I am still having to battle little tumors that want to keep growing back, BUT it is very manageable and I feel pretty normal, for the most part! I now look at it as a chronic condition, but one that can be managed. Will I end up dying from it eventually? Only God knows, but at this point, I still see myself as living for several more years.

    There are other people on this board who were bad off as stage IV at the beginning, and now have actually been considered NED (no evidence of disease) for several years now! It DOES happen, and it's happening more and more often lately.

    If you haven't already been told this, internet statistics are very outdated, as all statistics are- they are based on patients who were diagnosed and treated AT LEAST 5 yrs ago. My oncologist is the one who told me that- he told me not to read them because they're just too bad and he wanted me to stay positive and, more importantly, he didn't want me to read them because they're NOT ACCURATE! They have come out with several better treatments since then and people are now doing a LOT better!! Please let your father know this- that there IS hope!! If his doctors aren't giving off that message, then you should try to consult with someone else or even change doctors! Some doctors out there are still "old school" in that they don't offer much hope and are pretty gloomy about it all. I wish they would realize what an awful effect their attitude has on their patients and patients' families!! Please find a doctor who has a more upbeat attitude and is willing to be aggressive in treatment.

    Of course, this is all dependent upon if your father will change his attitude by realizing "his goose isn't cooked yet" and that he needs to do what he can to fight this.

    I hope that my info and story can help inspire you to inspire your dad & I will be praying for just that to happen!! Please keep us updated.
    Also- feel free to PM me if you want (PM is "private message"- let me know if you don't know how to do that- it's the CSN's email system).

    Blessings to you and your dad,
    Lisa
  • middlechild
    middlechild Member Posts: 7
    lisa42 said:

    my thoughts & hope for you and your father
    Hi,

    As Phil and Craig already expressed, I'm also sorry to hear you're going through this. How very frustrating it must be to watch your father refuse to eat or take his meds. What I'm wondering is... do you think your dad is being this way because he's convinced he's going to die, so "what's the use??!"
    If that is possibly the case, then perhaps his will to eat and fight this would change if he could be convinced that he can still fight this and he may not be dying after all. Of course, I don't know his specific situation, but you and he both need to know that being a stage IV patient even though it's technically still referred to as "terminal" (boy, do I hate that word!), does NOT neccesarily mean that he's about to die. He will bring that upon himself by refusing his food and meds much sooner than it would ever happen otherwise! There are many, MANY people who write on this board who are stage IV patients (myself included) who are doing quite well years after their diagnosis.

    My own story- I was diagnosed in August 2007 as stage IV rectal cancer with metastasis (tumors) in my liver and both lungs. I was also told I was not a surgical candidate because my tumors were too widespread (12 visible tumors in all parts of my liver and many, many tumors in all parts of both lungs). I later found out from my husband that the oncologist told him I easily could have died in another 4 months if I hadn't come in and started chemo then and he didn't know how much he could do, but he'd certainly try (fortunately, I was never told that and my oncologist had a very upbeat demeanor with me, which made all the difference in the world to ME in how I felt about my situation and my desire to have a fighting spirit). Anyhow, I amazed all my doctors- after just having chemo three times, most of my tumors shrank and several even disappeared. After finishing ten Folfox/Avastin chemo sessions, my PET scan showed NOTHING in my liver or lungs anymore (some did still show up on the CT, but not as active on the PET). It was then I started on radiation to shrink the rectal tumor and prepare it for surgery. I remember asking my radiation oncologist, "If the radiation makes my rectal tumor go completely away, will I still need the colorectal surgery?" She just looked at me kind of sadly and replied, "You know we're not expecting this tumor to go away- we're just shrinking it and softening it to prepare it for surgery." Well, six weeks of radiation shrunk it completely away and I never even needed the rectal resection. I have since found out that it is more common than I was lead to believe then that people's tumors shrink away with radiation. Anyhow- although many people still would have the colon/rectal resection surgery at that point, my surgeon and I decided together that I would not (we continue to watch that area carefully- still all clear at this point).
    At that time, I still had three tumors in my liver, but they no longer showed up as active on the PET scan and the disease was then controlled enough that I could go through a liver resection (the drs. would never have thought at the beginning that I would have ever been able to get to the point of being considered for liver surgery). I had the liver resection in May 2007 and recovered pretty well from it. Unfortunately, I am still having to battle little tumors that want to keep growing back, BUT it is very manageable and I feel pretty normal, for the most part! I now look at it as a chronic condition, but one that can be managed. Will I end up dying from it eventually? Only God knows, but at this point, I still see myself as living for several more years.

    There are other people on this board who were bad off as stage IV at the beginning, and now have actually been considered NED (no evidence of disease) for several years now! It DOES happen, and it's happening more and more often lately.

    If you haven't already been told this, internet statistics are very outdated, as all statistics are- they are based on patients who were diagnosed and treated AT LEAST 5 yrs ago. My oncologist is the one who told me that- he told me not to read them because they're just too bad and he wanted me to stay positive and, more importantly, he didn't want me to read them because they're NOT ACCURATE! They have come out with several better treatments since then and people are now doing a LOT better!! Please let your father know this- that there IS hope!! If his doctors aren't giving off that message, then you should try to consult with someone else or even change doctors! Some doctors out there are still "old school" in that they don't offer much hope and are pretty gloomy about it all. I wish they would realize what an awful effect their attitude has on their patients and patients' families!! Please find a doctor who has a more upbeat attitude and is willing to be aggressive in treatment.

    Of course, this is all dependent upon if your father will change his attitude by realizing "his goose isn't cooked yet" and that he needs to do what he can to fight this.

    I hope that my info and story can help inspire you to inspire your dad & I will be praying for just that to happen!! Please keep us updated.
    Also- feel free to PM me if you want (PM is "private message"- let me know if you don't know how to do that- it's the CSN's email system).

    Blessings to you and your dad,
    Lisa

    my dad
    Thank you Lisa for your encouragement. I am feeling hopeful now. I am going to advise my mom to get her support here, it is all so new to us and we have so many questions. You are right that he is convinced he is dying and is the reason why he is quitting. Your story gives me hope. Thank you so much and bless you.
  • middlechild
    middlechild Member Posts: 7
    Sundanceh said:

    Phil is right - he has to
    Phil is right - he has to want to engage in his treatment because no one can do it for him.

    I believe it is an invidual's right to make the decision on his/her own life and whether they decide to fight the illness or succumb to it. Nobody has a right to make that decision for us. And if you have to force all of the actions necessary from feeding to taking medicines, to going to doctors etc.etc., you will get real tired and frustrated very quickly.

    You can highly encourage him to please go ahead and try it first and then if he decides he can't go through with it, then...you may have to honor his wishes - this is a very hard fight and you've got to want it or it will not work.

    What concerns me is the lack of food intake for him. If he won't eat much, you might see if he could tolerate Ensure or Boost, they are supplement drinks that might help.

    Otherwise, when his nutrition gets too low, you could find yourself in a hospital with him being fed through an IV for sustenance and/or dehydration. That would just make the situation more difficult to work through.

    I'm sorry you are having to go through this - wish I had a magic pill for you, but I do not.

    -Craig

    my dad
    I think this is the best thing I did today by reaching out. Thank you for your support and encouragement.
  • middlechild
    middlechild Member Posts: 7
    PhillieG said:

    Don't know what to advise
    He's got to have to want to do this, you can lead a horse to water...
    Has he been told it's terminal or are you just assuming that it is because it's stage IV?
    My remedy for nausea and appetite is marijuana, it helps with both and with overall attitude.
    I think how long your Dad has is up to your Dad but I may be totally wrong, I'm just going on what you've told me.
    I hope he changes his mind about this
    -phil

    my dad
    I don't think he would consider the marijuana, but thank you for pointing out to me that Stage IV doesn't mean its terminal. I am not sure that he has been told that. I do know that his doctor could not perform surgery because "it had spread everywhere" He did tell my father that he should not worry about tomorrow and live for today. I guess we all assumed it meant terminal. Since he missed his first appointment with the oncologist, we really don't know. Thank you and I am going to encourage him. May you be blessed. I appreciate your support.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    middlechild
    "Middlechild",

    I'm glad you are now feeling some hope. Please do share my story with both your mom and especially with your dad as soon as possible, if he'll hear it. Talk with the doctors/nurse team about all the creative possible ways you can get nutrients in your dad to keep him going. I'm thinking about you, your mom, and your dad a lot. I will be praying (if that's okay with you) that your dad will allow himself to have nutrition and that he will be physically strengthened, and will even become of the state of mind to ponder possible hope for his future. Please let me know how things go.

    Blessings,
    Lisa
  • rwkeach
    rwkeach Member Posts: 17
    I too am a stageIV survivor!
    I don't come to this board very often but when I do it seems I always see something I have to respond to. I am so sorry to hear of your fathers struggle. Please let him know that there are many stageIV survivors, I am one of them. I was diagnosed Jan.31, 2004 with stage IV colon cancer, I had 2 recurrences, took chemo a total of 3 times and here I am: IN REMISSION!!!! You never know! I refuse to listen to statistics, somebody has to be in the survivor percentage and I like to think that I am one of them. Please tell your father to not lose hope, treatments have changed so much in the last few years, they have some pretty targeted therapies now.
    I'll will pray for him and also for you, his caregivers. Regine
  • middlechild
    middlechild Member Posts: 7
    lisa42 said:

    middlechild
    "Middlechild",

    I'm glad you are now feeling some hope. Please do share my story with both your mom and especially with your dad as soon as possible, if he'll hear it. Talk with the doctors/nurse team about all the creative possible ways you can get nutrients in your dad to keep him going. I'm thinking about you, your mom, and your dad a lot. I will be praying (if that's okay with you) that your dad will allow himself to have nutrition and that he will be physically strengthened, and will even become of the state of mind to ponder possible hope for his future. Please let me know how things go.

    Blessings,
    Lisa

    Thank you so much
    As soon as i logged off here last night I sent my mother an email about this helpful resource. I really appreciate your prayers, thank you. Prayer is powerful and I too will pray for you.

    Patty
  • middlechild
    middlechild Member Posts: 7
    rwkeach said:

    I too am a stageIV survivor!
    I don't come to this board very often but when I do it seems I always see something I have to respond to. I am so sorry to hear of your fathers struggle. Please let him know that there are many stageIV survivors, I am one of them. I was diagnosed Jan.31, 2004 with stage IV colon cancer, I had 2 recurrences, took chemo a total of 3 times and here I am: IN REMISSION!!!! You never know! I refuse to listen to statistics, somebody has to be in the survivor percentage and I like to think that I am one of them. Please tell your father to not lose hope, treatments have changed so much in the last few years, they have some pretty targeted therapies now.
    I'll will pray for him and also for you, his caregivers. Regine

    I feel hopeful
    This resource has been such a huge blessing for me, It gives me hope and I am going to try really hard to convince my father to keep fighting. He is 80 yrs old and has a large family who love him. I appreciate your words. Thank you
  • Janet3
    Janet3 Member Posts: 59
    Miracles happen every day!
    This has always been my philosophy for life but now that my mom has been diagnosed with Stage IV colon cancer and given 'maybe 3 months to live', it has become the thought that consumes my mind 24/7. Prayer is powerful. Encouragement is good! I just joined this board and have already read so many encouraging stories from so many positive and uplifting people. It's an amazing source of support. I wish you luck with this struggle. It's tough to watch your parent become depressed. It's also frustrating to see them give up. It's been said several times here that Stage IV does not mean terminal. I am positive in my mom's case it absolutely does not mean terminal. Having said all that, remember it is your dad's decision alone as to whether or not he seeks and receives treatment. As hard as it may be, you have to accept that. (This is the nurse in me talking, certainly not the daughter). My initial fear was that my mom would choose chemo and I absolutely did not want to see her go through that (again me being selfish),having been through one round of chemo and her positive attitude, I am sure that she made the right decision for her. Suuport means everything. So even if you don't like your dad's decision, be there to support him. It will mean everything. Encourage him to hydrate himself at the very least, Boost, Ensure, and Carnation Instant Breakfast are all good sources of protein which is important. If he can go to the market, take him, let him pick put what appeals to him, this may encourage him to eat more. Ooh I know I am wordy but you need encouragement. I don't have many ideas but am happy to share the few that I do have. My thoughts and prayers will be with you and your entire family as you make your way along this journey.
    Janet