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Thread: What does late stage look like?

  1. #1
    Experienced User
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    What does late stage look like?

    Hi all, my brother will soon begin Avastin/Irinotecan for liver and lung metastases from his colon cancer. He had RFA to take out the largest of his liver metastases, but within a month, his tumour marker tests started rising dramatically.

    I take it we are now in the business of buying extra time and extra quality time?

    He seems well now and like he always has, and I know each patient is different, but from what I see in the literature, we will be lucky to have him here for another three years, and I am guessing lucky if we have one healthy year left.

    What does the final progression look like? I know this is morbid, but what symptoms can we expect as the metastases start impairing his health? What kind of medical care will he need and what can we do to help most? We are trying to get ready and would appreciate an overview of what to expect.

  2. #2
    Top User DulcimerGal's Avatar
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    I'm so sorry to hear about your brother, I wish I could help but this late stage stuff is not an area I am familiar with personally.

    I'm sure someone on the forum will chime in to help you - although you probably already know that every case can seem very different.

    If you will send me a pm - I will send you the link to my friend's website - he had stage 4 colon cancer and sadly passed away two weeks ago. His website is a testament to his wonderful spirit, and does have some notes on different challenges he went through, you might find it helpful.

    Again, I am so sorry I can't be of more help
    Cheers
    DulcimerGal
    Rectal Cancer diagnosed Valentines Day 2008 - stage 3
    Finished 6 weeks of radiation and chemo 4/23/08
    Surgery to remove tumor - June 18th 2008
    Colostomy Reversal August 20th 2008
    Chemotherapy 5 months (Xeloda) finished Christmas 2008
    Local recurrence found May 2011
    Permanent colostomy and salvage APR surgery June 3rd 2011
    Stage 3C - 4 of 12 lymph nodes involved
    Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
    March 2012 - clean CAT Scan
    August 2012 - Cancer moves to stage 4
    CAT shows cancer cells implanted in pelvis/abdomen
    September - PET shows lung lesion 1.4 x 1 cm
    October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
    February 2013 - tumors shrinking, continuing biweekly chemo
    April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
    May - October Blessed chemo break!
    October 2013, scan shows more growth in pelvis and lungs
    Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
    April 2014 CAT scan shows tumors in liver
    June 2014 More tumor growth, stop Irinotecan cocktail after two years
    June 2014 Begin Regorafenib (Stivarga)

  3. #3

    What does late stage cancer look like?

    Hello Prairie Princess,

    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.

    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.

  4. #4
    Experienced User
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    My dear, thankyou very much for that. I am so sorry that you have lost two people so important to you, and even more sorry that your ex husband's end was so distressing. I agree that telling the story to others, and reliving the details is important and critical in your own processing. It helps a lot, doesn't it? I just lost my dad and although his passing was fairly quick and painless, I find I need to go over it again and again to kind of "get right" with the whole experience.

    This kind of information is just what we need to get ready for what it coming. It sounds like my brother will continue to feel pretty normal until quite late in the process. And then we look for fatigue, dawning discomforts, and as they progress, mounting system failure symptoms? Happily, once we cannot keep him comfortable at home there are good hospice options for him locally.

    I am middle aged and while in good health, these experiences are telling me that quality of life is so important now. I want to take better care of myself, both physically and mentally, so that when my time comes I am not sitting there with a big box of regrets.

  5. #5
    Regular User
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    Mar 2008
    Location
    Mississippi
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    Just wanted you to know that was the most touching story I have every read. You have such a beautiful way with words and I know it must be hard still. God bless you and your family.
    Stage II Colon Cancer
    Diagnosed March 28, 2008
    Underwent Sigmoid Colectomy April 3
    Starting Folfox chemo May 2008
    Age 29, No history in Family

  6. #6
    Top User DulcimerGal's Avatar
    Join Date
    Apr 2008
    Location
    Virginia
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    Prairie Princess - thanks for asking the question, and Wish I could do something - thanks so much for answering it. I think the folks who post on forums like this are looking for answers, we all want to know as much as we can. Your story helps us all.

    I too am so sorry for your recent losses, that must still be very difficult.
    I also really appreciate hearing the details, difficult as it was to read.

    Take care of yourself and keep posting
    DulcimerGal
    Rectal Cancer diagnosed Valentines Day 2008 - stage 3
    Finished 6 weeks of radiation and chemo 4/23/08
    Surgery to remove tumor - June 18th 2008
    Colostomy Reversal August 20th 2008
    Chemotherapy 5 months (Xeloda) finished Christmas 2008
    Local recurrence found May 2011
    Permanent colostomy and salvage APR surgery June 3rd 2011
    Stage 3C - 4 of 12 lymph nodes involved
    Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
    March 2012 - clean CAT Scan
    August 2012 - Cancer moves to stage 4
    CAT shows cancer cells implanted in pelvis/abdomen
    September - PET shows lung lesion 1.4 x 1 cm
    October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
    February 2013 - tumors shrinking, continuing biweekly chemo
    April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
    May - October Blessed chemo break!
    October 2013, scan shows more growth in pelvis and lungs
    Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
    April 2014 CAT scan shows tumors in liver
    June 2014 More tumor growth, stop Irinotecan cocktail after two years
    June 2014 Begin Regorafenib (Stivarga)

  7. #7
    Senior User
    Join Date
    Feb 2008
    Location
    Perth, Western Australia
    Posts
    179
    Thank you so much for this information. While it was very sad to read, it provides much needed information so that we can be better prepared to support our loved ones through this difficult time.
    I have been told that positioning the person on their side rather than on their back stops that death rattle. I do remember that is what the nurse did for my Mum when she was dying of stomach cancer many years ago.
    In Perth Western australia - Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. March 2006 Bowel re-section, then two+ years of continuous chemo, folfox then folfirri with two years of Avastin. Then MAX chemo. Had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver. Prognosis 22 months he lived for 36 months and did a few very long road trips in that time which he enjoyed.

 
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