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Thread: Final stages/death from colon cancer

  1. #1

    Final stages/death from colon cancer

    Greetings all...

    Sure wish I didn't have to ask this but...

    My hubby (44) has been given 4-6 mths to live. He was diagnosed with stage 4 colon cancer with mets to liver, lungs, lymph nodes 5 years ago. Up until June 2009 chemo/radiation have kept everything in check...then in June they found a ping pong ball sized tumor in his brain.

    The operated, removed the tumor, gave him whole brain radiation and put him back on chemo in early Aug. Follow up MRI/CT found 5 more brain tumors anad the mets in his lungs & liver growing.

    His oncologist (awesome Dr.) told us to go and enjoy the time we have left as the chemo is not working any longer and due to the fast recurrance of brain tumors he is not a candidate for trials any longer. She wanted him to enjoy what remains of life while his quality of life was still good.

    Since late Aug he's lost massive weight, no energy, no appitite...he's back on a different radiation but his body would not stand chemo again.

    The Dr. said the tumors would not kill him...he would just grow weaker until he passed.

    My question...has anyone experianced this? What can I expect? We're scared and know no one who's been through this before...any comments would help.


  2. #2
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    I am sorry you are going through this. Sometimes I think it is harder on our loved ones watching us go through this than it is on us.

    There was a poster, who went by Darwin, that had a similar journey as you. Search for her post. Here is one of the last ones she posted;

    http://cancerforums.net/viewtopic.php?t=11758
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  3. #3
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    I am so sorry to hear about your husband and what he is going through, its so hard seeing a loved one suffer so much, thats what I had to do with my wife,I made her comftable and we talked a lot and we tried to make some memories ... I am praying for you, husband and family, keep going,,
    God Bless......

  4. #4
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    Hi

    I know how you feel, saying that in July we were given 6 - 8 months. I am a few years older than you so maybe experience helps some. But I work for a health department and we have a Hospice branch. I know they help me so much when I have questions or need answers. I think for my part the watching him get weaker and the mind get slower is very hard. The girls here tell me that he will gradually get weaker and then most likely just go to sleep and then not wake up. I don't know if this is what information you wanted. I believe the main problem will be to keep the pain under control. If you let the pain get away from you it is harder to get under controll. So make sure he is on a schedule. Also let him remain in as much control as possible. I believe Gary fears the not being in control as much as anything. He writes down things for me to do like when to read the light meter. Sometimes I feel as if I have no control, but I have to remember this is not about me. If you can get help from a hospice they would help you with a lot of the questions. Remember to be good to yourself, and make memories. If I can help give me a shout. I will remeber your family in my prayers. Hugs to you all
    Tam

    Husband is 55 years old, has metastic colon cancer, with Lung, Liver, kidney currently Colon surgery 5/07 with chemo, 9/08 Chemo started
    10/08 Scan in Dec 08 (Grown) Scan Feb 09 (Grown with liver, both lungs , Kidney)
    3.5 cm lung, 5 cm kidney, 4.5 renal, 2.6 iliac lymph etc. CEA 166 8/25/09 Nothing has slowed it down, we have stopped chemo, due to side effects and lack of any results, he is admitted to Hospice on 12/30/09. We will enjoy what we have Husband passed away 2/14/2010

  5. #5

    Re: Final stages/death from colon cancer

    Below is a response I gave someone else who had asked a similar question. It has been over a year and a half and the pain isn't as sharp as it was. However, I do have moments of sadness. My son was married this last May and that was a rough time for all of us. My daughter is getting married next year and she is struggling with not having her father to walk her down the aisle. In addition, my ex-husband had genetic testing done because of family history and they found a mutation. Both my children were tested and unfortunately both tested positive for the mutation as well which scares me. It is unbearable to think about having to watch my children deal with this horrible disease as well. I pray for a cure for everyone's sake! By post is below...sorry it is so long. One thing that may be different in your situation is that if the majority of the growth is in the brain or lungs then some of the symptoms at the end may be different.

    Unfortunately, I know a lot about late stage cancer. My mother-in-law passed away from metastic colon cancer in 1994 and more recently my ex-husband passed away on April 22, 2008 as well.

    For both, they went through chemo for two years, but eventually the cancer spread to other areas (peritoneal, small intestine, and more growth in the colon) until they were told by their doctors that we could try doing the same chemo again, but at the most they might get 6 mos. to a year. Both of them decided not to pursue chemo any longer and wanted to enjoy whatever time they had left. My mother-in-law ended up getting a blockage in her small intestine and because she was so thin and frail, she barely got through the surgery and then her body started to shut down. I am thankful for the way she passed, it was more peaceful that my ex-husbands.

    My ex-husband stopped chemo in December, had a PET scan in January which showed the increased metastasis. His doctor told him mid-January what his options were. My ex decided not to go any further with treatment. The doctor stated that he would probably reach some kind of medical crisis within three months. He was fine in February, blood work wasn't bad, his CEA went up to 196. The beginning of March, he began to get more tired and had some pain, but it was controllable with tylonel with codene. He started to only work part-time and slept more. We went and filled out the paperwork for Pallative Care mid March and every week to ten days we had to increase his pain medication. March 24th, he was admitted to the hospital due to a partial blockage. We got that under control, but his CEA was up to over 700 and his pain management now was taking morphine and delayed release tylenol with codene. He also stopped working at this time and had more difficulty eating. He was losing 3 - 6 lbs a week and sleeping 15 - 20 hours a day. At this point he was living alone and me and my grown children were coming to his place to take care of him. It got to the point at the end of March that we decided to move him to the Hospice House where he could have 24 hour care. He actually did much better there. His appetite picked up and his weight stablized. He didn't seem to sleep as much as well. When you are on hospice, you cannot have any lab work done. So, the last lab work that was done showed that his CEA was up to over 1700 and other things were showing signs of his body not being able to process things as well. He was also pretty weak and could not walk very far and mostly stayed in bed or sat in his recliner. During this time, he still didn't eat very much and his body was not able to handle any red meat and milk. He had to be extra careful of what he ate. His stomach was really distended (he looked like he was pregnant). About a week before he died, one of his legs began to swell up and he had more difficulty walking. This was the first sign that we had. But since we couldn't do any tests, we didn't know if maybe the cancer was pressing against something to his leg and this was causing the swelling or what it was. Now we know that this is usually a sign that the liver is not processing the toxins in his body. He also was paranoid and agitated sometimes, and later we realized that this was due to the toxins in his body building up in his brain. We thought at the time that it was just stress related to the cancer. He went downhill pretty rapidly, which in some ways is good (hopefully less suffering on his part), however because it happened so quickly we were not prepared for it. On the Sunday before, he started to talk in his sleep and move as well. It progressed that night to hallucinating and only having a moment here and there of any lucidity. By Monday afternoon, he wasn't waking up at all and couldn't really answer any questions. By Monday night, he was unresponsive and his breathing was more labored. Monday at midnight, he started to have the death rattle that sounds like he is drowning in his own fluids. Me and the kids were there from Sunday night until his death at 6am Tuesday morning. The nurses gave us this pamplet saying that the noise we were hearing was more distressful to us than it was to him. However, if I had to do it all over again, I would have made them suction out his throat. That noise still haunts us all. The nurses came in to re-position him at 5:50 am and when we went back into the room, he was barely breathing and took a breath every 30 - 45 seconds. This lasted a few minutes until he took his last breath at 5:58am. The last few hours before his death, he didn't even look like himself anymore. His face was sunken and his skin bluish. But we still held him and cried even after his death. It was amazing that even two to three hours after his death there were parts of him that still felt warm. This is probably too much information, but it is kind of therapeutic for me. I am still not over it. I wish I could get the image of those last few days out of my head. I want to remember him like he was before. I hope that eventually I will get there. My thoughts and prayers are with everyone who is dealing with this horrible disease and those who have to be bystanders and watch what this does to those we love.
    _________________
    Wishing the best for all who are dealing with cancer themselves or in their family.
    Wishing the best for all who are dealing with cancer themselves or in their family.

    Diane

    Ex-husband diagnosed April 2006 Stage 4 - mets to liver, treatments FOLFOX & FOLFIRI & ERBITUX - responded to treatment for awhile, lost his battle with cancer on April 22, 2008.

    Mother diagnosed February 2014 with Follicular Non Hodkins Lymphoma - Stage 4a, multiple lymph nodes and bone marrow involved. PET scan scheduled for 2/24/14.

  6. #6
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    My heart truly goes out to you. I cannot imagine what it would be like to look at my wife and know that I was going to lose her.

    I am certain that everyone that has had or still has cancer on this forum has had to look death in the eye, since all you know at first is that you have cancer . Testing and info for what stage it is at comes later.

    When I was told that I had cancer I had peace, since I knew with certanity that I would go to a better place then here upon my death.
    Not because I had a positive attitude, or was a nice moral person. But because I had asked God to forgive me of all the un-nice, immoral things I had done, my sins. I also accepted the payment Jesus made for my sins by dying on the cross.

    Jesus said this about himself

    He (God) gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life.

    The way to receive forgivness for your sins is simple.
    The apostle Paul explains in the bible:

    That if you confess with your mouth, "Jesus is Lord," and believe in your heart that God raised him from the dead, you will be saved.

    It is that simple

    If you have any quetions please feel free to contact me. I am praying for the both of you

    Bob
    50 year old male
    Oct 2008 diagnosed w/Low Rectal Cancer
    Stage 3
    Mar.19 2009 AP Resection
    Oct. 23 2009 finished post op chemo (Xeloda)

  7. #7
    Top User topazil's Avatar
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    I am a very emotional sympathetic and empathetic person so right now words fail me so (((((((((((((((Hugs)))))))))))) to all until I get myself under control enough to respond.
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  8. #8
    Top User topazil's Avatar
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    This is what someone sent me in query to your question:

    (This does not specifically specify colon cancer)

    Facing The Final Stage of Life

    Some people have cancer that is in an advanced stage or can no longer be treated successfully and they must face the fact that they will probably die. This is scary for the person who is sick and for those around them.. The person with cancer may be in pain, may be in bed or be able to walk only a few steps, or be confused. This process of decline is usually hard to watch if you are a friend or relative. No matter how hard it may be, it is still important to try to be there for the person. The person with cancer may feel lonely even if there are people around. That can be true because those people may not be really in tune with what is going on with the person. You can be the person who is in sync with your loved one every step of the way. Just by staying close and listening with a smile or gentle touch you show you are there for your friend or family member. It takes courage and extra energy to be in this situation. The person with cancer can tell what is a sincere effort and appreciate it.

    Sometimes the person with advanced cancer may pull away from people and seem to be withdrawing as he or she enters the dying process. This is usually a natural process and is one way of disconnecting from life. The best thing you can do if this happens is to take the person's cue, and simply stay in the background and be available. Try not to take this withdrawal personally or feel hurt when the person pulls away. It usually has nothing to do with you.

    Many people worry about what to say when a person talks about dying. This is something that commonly happens, although people may talk about different things in the dying process. Some, need to know how they will die. What will actually happen in the dying process? For answers to this question, you will need to find experts in hospice care or care of the terminally ill, who can guide you in helping to answer in a general way what possible situations might happen. If you don't know the specific answer, you can say, "I don't know, but we will call some people who can help us with those answers." Hospice staff is used to answering those questions every day, and they are skilled in answering those types of questions with good information in a supportive way. In many communities, hospice organizations provide expert and compassionate care for people with advanced disease. If you would like to read more about hospice care and end of life issues, please see other American Cancer Society publications, Nearing the End of Life and Hospice Care. Information on advanced cancer and caring for the cancer patient at home is also available by calling our toll free number or visiting our Web site (see "Additional resources" section below.)

    You may be asked, "Why is this happening to me?" It is very hard to hear this question because there is no answer, and it is heart wrenching to feel the pain that lies within such a question. This is a question where the simple answer "I don't know" and the holding of a hand and letting the person cry or talk about their sadness and regrets is the best you can do. Allowing a person to do this is a true help because so many people avoid the topic of dying and can't allow themselves to feel the pain with their loved one.

    Some people who know they are going to die may feel the need to get some things off their chests. They may want to talk about some of the things they did in their life that they are not proud of or regret. They may want to apologize about these deeds. They may want to give you instructions about what to do for them in the future. Respectfully listening and, of course, forgiveness and a loving attitude are all that is necessary. There are no magic words for the dying person, but often your presence is like magic and having an open heart is priceless.


    What my Oncologist in Fresno before I moved to San Diego told me when I had at that time opted for no care and pressed him for what would happen to me specifically at the end stages of life he told me that because I had colon cancer (The tumor itself was removed so other than another tumor growing there and creating problems) either my liver or my lungs would cause me to die, as my colon cancer had metastasized to these areas. In graphic detail he told me he hoped it would be my liver as I would see myself growing more jaundice, more weak, more tired, less appetite and one day I would simply pass away, probably in my sleep.

    If it was my lungs that got me first I would gradually feel more and more pressure on chest and it would be harder to breathe, I would have to be put on a respirator or something and finally when the mets had invaded all of my lung area I would pretty much suffocate to death (pretty picture huh? but I did ask him for worst scenerio. And remember this is without any treatment, chemo, etc at all.

    I say a prayer for you and your family and your husband that he is given a bit more time if it is in the fates for you and that his passing is peaceful and painfree when it comes (((((((((((((((((Hugs)))))))))) you and he are in my thoughts, prayers and hopes.

    I have suddenly developed a fear of passing myself not because of what happens after but because I am not ready to leave my Tom after just 9 months of being with Him and also I am fearful of pain. But as others have said hospice can help with that and I have talked to a few hospice organizations and even gone to see them and they seem warm, compassionate people who will do all they can to ease the passing for the person and for the spouse and other family (or boyfriend, girlfriend, friends, etc).
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  9. #9

    Thank you all

    Thanks for all the responses...I never know I had so many tears...daytime I can handle things, get things done and function "normally". But night time sucks (to be blunt). I cry all the time...and I get mad because it's just not fair. I know, life in general is not fair but who can be logical all the time...

    Bill had a good day today, awake and very interactive...then we discovered massive bruising on his hands and behind his knees...I looked it up on the internet and it looks like it might be the liver having problems. He's not jaundice so I'm hoping it's his blood thinners causing it.

    I'm just so scared for him and for me...I'm not ready to let him go yet...but I guess no one is really prepared for that huh?

    Thanks again for all your responses...the more info I get the better prepared I am...sort of "girding my loins" I guess. Monday I make the call to Hospice...it's time for some extra medical help.

    Huggs all...Rhaven

  10. #10
    Top User topazil's Avatar
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    I understand Rhaven even though I am not to that point myself, I think it's the fear for the other person, are they distraught? are they in pain? are they scared? etc etc, and then there is you who is not ready to have this person leave from your life and you have all these emotions. I wish I knew what to say or how to comfort you but I don't, I am finally going through the different phases of grieving my own coming death (when it comes) when I was first diagnosed I didn't go through any of the phases but acceptance, now I am hitting all these emotions, fears and worries like a brick wall head on.

    Crying they say is cathartic, I say that's a bunch of hooey cause if I really let myself go and cry like my body wants me too, I am afraid I'd never stop, but for you it could be that it is a release and is what helps you get through the daytime and function you know?

    I know it's not fair, none of it is fair and I wish so much that suddenly your husband would be well or a cure found "just in time" like in the movies, unfortunately this is real life and the good are taken before their time as well as those less good.

    Like I posted before and found out myself before even needing them Hospice are the most kind, compassionate people in the world, they are trained with not just the medical but the mental and emotional side also and will be a great help for you ((((((((((((((((hugs)))))))))))))) and once again you and your husband are in my thoughts and prayers this day and Rhaven, I cried this morning for once not just for myself and my Tom who will be left behind when I go but for you also.

    Please Dear God, let this be a good day for Rhaven and her husband I beg of you, Amen.
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  11. #11
    Top User topazil's Avatar
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    lawlet I didn't mean to leave you out, I am so sorry for all that you are experiencing right now and you are in my thoughts and prayers also this day. ((((((((((Hugs)))))))))))))
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  12. #12
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    Re: This is what someone sent me in query to your question:

    ***Facing The Final Stage of Life***

    Great post. I wonder if Brainman should make it a sticky on the main page?
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  13. #13
    Top User topazil's Avatar
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    Might be a good idea REB, wanna suggest it?

    Also I see you might have an end date to the Erubitex (sp?) Good thing I hope?
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  14. #14
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    Quote Originally Posted by topazil
    Might be a good idea REB, wanna suggest it?

    Also I see you might have an end date to the Erubitex (sp?) Good thing I hope?
    I'll see what I can do.

    So far, it is a good thing. If the cancer doesn't resurface next year, then I'll stop Erbitux after I do a years worth. Then we'll wait and see what happens. I think that is when I'll be the most scared...waiting to see if the cancer comes back or not. If it does come back, I don't know what I'll do. I am running out of options. I am guessing I'll be put back on Erbitux and continue it as long as it keeps working, or my body can't take it anymore.

    But I can't dwell on the 'What ifs'. I have to take it one day at a time.
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

 
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