Anyone know a timeframe without treatment from personal experience?

Posted by tnt69 @tnt69, Dec 30, 2023

I am just wondering if anyone has had a loved one with pancan stage 3 that opted not to take treatment and how long they lived, wanting to know from a personal level, ( I already know what the doctors and numbers say) which by the way means nothing because they don't like giving numbers and will avoid the question if possible,but the answer seems to always come back to ( well these are just your average numbers so it doesn't mean anything). just trying to hear from people that have dealt with this situation personally.

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@colleenyoung

@tnt69, I hope you don't mind, but I'm going to attempt to read between the lines of your question. You care deeply for your sister and you want to learn more about what you can expect. This is, of course, more than just a timeline in terms of months, weeks and days. You want to be prepared, not only for yourself, but so you can support her and help her gently to the best ending. Do I have that right?

You might find this article from Virtual Hospice helpful:
– Final weeks and days: What to expect https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/Final+weeks+and+days_+What+to+expect.aspx

It is not pancreatice cancer specific but I found it useful to read when my dad was diagnosed with stage 4 colon cancer. It helped me to be prepared. My father-in-law had metastatic prostate cancer and again we were better prepared as to what to expect. He had home hospice and we set up a hospital bed on the main floor so he could have a clear view through the picture window to the lake – the view for which he built the house.

Have you looked into palliative care and/or hospice options for when they are needed?

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no I haven't looked into hospice (which we would be doing from her home, way down the road). she is for the most part doing very well considering what she has, really the only thing that is really bad is the terrible heartburn,( bile acid) thing she has going on, which is hell on her because she always seems to get this kind of heartburn that when she burps it causes heartburn and a taste in her mouth that makes her absolutely miserable, we have tried several different things to get rid of it but it always comes back,at this point it's really the only thing keeping her down, otherwise she could be enjoying the time she has left, I am really hoping someone out there has some solid advice as to how we can get rid of this, because ever since she opted to stop chemo, it seems all the doctors involved with her are only interested in playing pass the buck ( which they told us would never happen, if she chose to stop the chemo) interesting how totally opposite things are being done after they told us what they did. as a matter of fact they are basically telling her now that she doesn't even need an oncologist since she no longer is taking the chemo. any positive thing that has helped her we have had to find out our selves after literally hundreds of hours of research, you would think the doctors would tell us the things that we had to search for. perfect example was the enzyme pills that I finally figured out she needed after about a month of suffering so bad that she was actually afraid to eat, and not one of her doctors told her she should start taking them( pretty sad if you ask me) anyways I don't mean to go on and on, but if someone could please explain to me what is going on with her stomach with this insane heartburn /bile thing and what to do to ease it or even better make it disappear I would so appreciate it, thank you,and god bless

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I was prescribed Dexilant for acid reflux.,it worked! There are several others that can be prescribed as well. If oncologist won’t, talk to family dr.

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Hello tnt69,
I'm not sure how relevant this information is as it happened back in 1999. We saw my dad for Christmas in 1998. I visited him around Jan. 15 for his birthday and we saw he had lost about 25 pounds. The inept drs. that were treating him thought he had food poisoning and had put him on antibiotics and obviously that didn't work. By March he continued to lose an extraordinary amount of weight and after asking his dr to give him CT they found and now determined he had pancreatic cancer which had now spread to at least his stomach, and lungs, (and probably liver). They put him on hospice saying they couldn't do anything for him. He came to live with us from end of March until he passed in late August. When he first came to live with us I gave him protein drinks and cooked filet fish which he tolerated for about 1 week; afterwards the only thing he could tolerate was Ensure for all of his meals. Hospice came in for his care (bathing, nurse, and social worker 2-3x per week) and they were incredible and my dad loved and I think thrived on their care which is saying a lot because he was usually very critical. When he came to our home he had some type of breathing machine as he had a very difficult time to breathe. To be frank, it was very difficult to see your loved one diminish within a short period of time; I was also pregnant at the time with morning sickness that lasted 5 months, but there is not one second in my life that I ever regret bringing him to my home and caring for him. I tried to connect with relatives he had not seen for years and they came to see him or talk to him on the phone. My husband was there to talk with him man-to-man since my brothers wouldn't show up. My sister's option was to put him in a home, and because I and dad didn't follow her advice it created a rift between my sister and me that exists to this day. One very interesting note about my dad is that he never took any pain medicine until the moments before he passed as he was really struggling to breathe and that of course ended his suffering. He was 77 years old, but very healthy (rarely drank and didn't smoke), and used his treadmill. We have a very aggressive form of cancer, so your loved one may last longer. The best you can do is offer family, friends, and love and support. I wish you and your family well.

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@tnt69

no I haven't looked into hospice (which we would be doing from her home, way down the road). she is for the most part doing very well considering what she has, really the only thing that is really bad is the terrible heartburn,( bile acid) thing she has going on, which is hell on her because she always seems to get this kind of heartburn that when she burps it causes heartburn and a taste in her mouth that makes her absolutely miserable, we have tried several different things to get rid of it but it always comes back,at this point it's really the only thing keeping her down, otherwise she could be enjoying the time she has left, I am really hoping someone out there has some solid advice as to how we can get rid of this, because ever since she opted to stop chemo, it seems all the doctors involved with her are only interested in playing pass the buck ( which they told us would never happen, if she chose to stop the chemo) interesting how totally opposite things are being done after they told us what they did. as a matter of fact they are basically telling her now that she doesn't even need an oncologist since she no longer is taking the chemo. any positive thing that has helped her we have had to find out our selves after literally hundreds of hours of research, you would think the doctors would tell us the things that we had to search for. perfect example was the enzyme pills that I finally figured out she needed after about a month of suffering so bad that she was actually afraid to eat, and not one of her doctors told her she should start taking them( pretty sad if you ask me) anyways I don't mean to go on and on, but if someone could please explain to me what is going on with her stomach with this insane heartburn /bile thing and what to do to ease it or even better make it disappear I would so appreciate it, thank you,and god bless

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Please consider working with a palliative care MD or hospice. At my center, patients are referred to a palliative doc immediately after diagnosis. The palliative MD takes care of symptom control and comfort care; that's his focus, not anything to do with treatment. It's not hospice, although he can help set up hospice as well. Hopefully you can find someone you can work with quickly.

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@mnewland99

Hello tnt69,
I'm not sure how relevant this information is as it happened back in 1999. We saw my dad for Christmas in 1998. I visited him around Jan. 15 for his birthday and we saw he had lost about 25 pounds. The inept drs. that were treating him thought he had food poisoning and had put him on antibiotics and obviously that didn't work. By March he continued to lose an extraordinary amount of weight and after asking his dr to give him CT they found and now determined he had pancreatic cancer which had now spread to at least his stomach, and lungs, (and probably liver). They put him on hospice saying they couldn't do anything for him. He came to live with us from end of March until he passed in late August. When he first came to live with us I gave him protein drinks and cooked filet fish which he tolerated for about 1 week; afterwards the only thing he could tolerate was Ensure for all of his meals. Hospice came in for his care (bathing, nurse, and social worker 2-3x per week) and they were incredible and my dad loved and I think thrived on their care which is saying a lot because he was usually very critical. When he came to our home he had some type of breathing machine as he had a very difficult time to breathe. To be frank, it was very difficult to see your loved one diminish within a short period of time; I was also pregnant at the time with morning sickness that lasted 5 months, but there is not one second in my life that I ever regret bringing him to my home and caring for him. I tried to connect with relatives he had not seen for years and they came to see him or talk to him on the phone. My husband was there to talk with him man-to-man since my brothers wouldn't show up. My sister's option was to put him in a home, and because I and dad didn't follow her advice it created a rift between my sister and me that exists to this day. One very interesting note about my dad is that he never took any pain medicine until the moments before he passed as he was really struggling to breathe and that of course ended his suffering. He was 77 years old, but very healthy (rarely drank and didn't smoke), and used his treadmill. We have a very aggressive form of cancer, so your loved one may last longer. The best you can do is offer family, friends, and love and support. I wish you and your family well.

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How very brave of you to take such good care of your father! Not everyone is capable of doing what you did for your father. Very hard to understand why your sister would be unhappy about the way that you took care of your father, but she has her reasons I suppose. I wonder because my sister, who has the same BRCA1 gene, has esophageal cancer and not going well, not responding to chemo. She has been at University of Michigan and Cleveland clinic, will be coming to where I am for third opinion at MSKCC. I would like to promise that I would be with her right to the end but I am not sure I will really be up to it. I read your story knowing it could be my story some day. I have pancreatic cancer, good response to oxaliplatin and 5-FU and had Whipples in June 2023. I am not back to my pre diagnosis status, but doing OK. Trying not to live with fear about what the end might be like for me. My condolences on your loss.

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@gardenlady1116

How very brave of you to take such good care of your father! Not everyone is capable of doing what you did for your father. Very hard to understand why your sister would be unhappy about the way that you took care of your father, but she has her reasons I suppose. I wonder because my sister, who has the same BRCA1 gene, has esophageal cancer and not going well, not responding to chemo. She has been at University of Michigan and Cleveland clinic, will be coming to where I am for third opinion at MSKCC. I would like to promise that I would be with her right to the end but I am not sure I will really be up to it. I read your story knowing it could be my story some day. I have pancreatic cancer, good response to oxaliplatin and 5-FU and had Whipples in June 2023. I am not back to my pre diagnosis status, but doing OK. Trying not to live with fear about what the end might be like for me. My condolences on your loss.

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Sometimes as difficult as it may be we have to accept our limits

PC and chemo beat me brutally. Recognizing that I couldn’t be the same person I was before PC, that I could no longer be the “go to guy” I was for family and friends.

Sharing my inability to help I felt that I was letting folks down. I feared a negative response. What I received was unconditional love, understanding and help.

I’ve gotten to the place where I can love folks and not necessarily be of help to them.

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All the little things that people do have suddenly become important in day to day life, the person who opens the door for you, picks up the glove you dropped, says "have a nice day" and really seems to mean it. I thanked my friend for taking a walk with me. I don't really know if these things were happening all along or I just suddenly started to be aware of them. Wish I could say I was able to let all of the little stuff go. Not really there yet. This forum has really helped me so thanks to all who share, read and respond and for lots of great information. I learn from every story that is shared.

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@gardenlady1116

All the little things that people do have suddenly become important in day to day life, the person who opens the door for you, picks up the glove you dropped, says "have a nice day" and really seems to mean it. I thanked my friend for taking a walk with me. I don't really know if these things were happening all along or I just suddenly started to be aware of them. Wish I could say I was able to let all of the little stuff go. Not really there yet. This forum has really helped me so thanks to all who share, read and respond and for lots of great information. I learn from every story that is shared.

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totally agreed that this form can and will help, I have learned so much,have been able to vent,and also have heard stories from actual people who have been through same senirios. so glad and thankful for this forum everyday, as I like I would feel so much more lost without it. also I would like to thank all the caring compassionate people out there that have answered questions,gave advice and just down right cared even by just sending a hug if they don't have a comment. thank you all and God bless!

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@tnt69

totally agreed that this form can and will help, I have learned so much,have been able to vent,and also have heard stories from actual people who have been through same senirios. so glad and thankful for this forum everyday, as I like I would feel so much more lost without it. also I would like to thank all the caring compassionate people out there that have answered questions,gave advice and just down right cared even by just sending a hug if they don't have a comment. thank you all and God bless!

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🥰

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