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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There are soooo many variable to consider that I could not hazard a guess. All I can say from experience with my dad's passing this summer (mesothelioma) was it was 2-3 weeks from the time he started refusing food or being able to keep down anything he ate, and about 1 week from refusing to drink more than a sip or two, until that final breath.

The up-and-down roller coaster after he stopped treatment(7 months prior) was really hard for us. He was in and out of the hospital and rehab twice during that period, in serious enough condition (at age 85) that I had already said my goodbyes 3 times.

With his mesothelioma, respiratory issues were the biggest -- constant exhaustion from never getting enough oxygen. With pancreatic cancer, mets to the lungs or ascites in the chest may cause similar symptoms, but you also have to be aware of tumors affecting the spine, nerves, or digestive tract. I would try to get lined up with a good palliative oncologist as soon as possible so you'll know what your options are (nerve blocks, feeding tubes, surgeries) and have an advocate onboard. There's a lot to be said for maximizing whatever quality time you have left while you have it.

I lost two classmates to PC 1.5 years ago. Both in the 58-62 age group and pretty fit. The first lived about a year at Stage-IV with treatment. The second was diagnosed at a gnarly Stage-IV and declined treatment, passing within 3 months of diagnosis, iirc. I wasn't super close to either and not involved in their care, but I did see latter a day before he died, and it was pretty obvious to me the end was very near. 🙁

I'm very sorry to hear you're at this point in your loved one's journey, and sorry I don't have better data or words to convey, but I wish you both the best under the circumstances.

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I agree many variables. My sister was diagnosed with pancreatic cancer and had already spread to liver and lymph nodes when they found it. She passed away 6 months later.

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@markymarkfl

There are soooo many variable to consider that I could not hazard a guess. All I can say from experience with my dad's passing this summer (mesothelioma) was it was 2-3 weeks from the time he started refusing food or being able to keep down anything he ate, and about 1 week from refusing to drink more than a sip or two, until that final breath.

The up-and-down roller coaster after he stopped treatment(7 months prior) was really hard for us. He was in and out of the hospital and rehab twice during that period, in serious enough condition (at age 85) that I had already said my goodbyes 3 times.

With his mesothelioma, respiratory issues were the biggest -- constant exhaustion from never getting enough oxygen. With pancreatic cancer, mets to the lungs or ascites in the chest may cause similar symptoms, but you also have to be aware of tumors affecting the spine, nerves, or digestive tract. I would try to get lined up with a good palliative oncologist as soon as possible so you'll know what your options are (nerve blocks, feeding tubes, surgeries) and have an advocate onboard. There's a lot to be said for maximizing whatever quality time you have left while you have it.

I lost two classmates to PC 1.5 years ago. Both in the 58-62 age group and pretty fit. The first lived about a year at Stage-IV with treatment. The second was diagnosed at a gnarly Stage-IV and declined treatment, passing within 3 months of diagnosis, iirc. I wasn't super close to either and not involved in their care, but I did see latter a day before he died, and it was pretty obvious to me the end was very near. 🙁

I'm very sorry to hear you're at this point in your loved one's journey, and sorry I don't have better data or words to convey, but I wish you both the best under the circumstances.

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sorry for the loss of your father,it always seems so unfair when we lose a loved one, thank you for taking the time to talk to me, my sister is still eating and drinking so that's fantastic but a worry everyday that she will stop soon, I am grateful she will see 2024, because doctors told us back in June that if she doesn't do chemo she would only have a few months left at best, so I am very glad they were wrong. she has good days and bad days but she is a fighter so hopefully she gives us many more days. thank you for your response and God bless.

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@rwr

I agree many variables. My sister was diagnosed with pancreatic cancer and had already spread to liver and lymph nodes when they found it. She passed away 6 months later.

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sorry for the loss of your sister, this disease is so unfair and not a lot of options,it's so sad,thank you for your response and God bless

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My sister was diagnosed Feb-Mar 2022. Began testing and consults in March at Mayo, Rochester.

Started chemo in April in our hometown (she refused to stay at Mayo because of her two cats - poor choice). Four months of Folfirinox with visits to Mayo for testing every two months. Chemo and radiation (CRT) for five weeks (also should have been done at Mayo, but the cats - another poor choice). Four weeks off prior to visit to Mayo for scheduled Whipple.

During CRT she presented with ascites - which meant we really did not need to return to Mayo, but we went anyway. The surgeon was kind, but explained she was no longer operable. She asked how long? He said (paraphrasing), "with chemo, perhaps a few months, without a few weeks."

We returned home, she restarted the same chemo, but she crashed, went into hospital for two weeks, rehab for two weeks, then she made the decision to enter hospice care so she could be with her cats at home.

My wife and I lived with her for the next two months until she passed in March 2023.

Sorry for short sentences ... still very difficult to think back.

My advice, which I have shared often is:
1. do not think you can be successfully treated for this horrible disease in your hometown, unless you are located near a pancreatic cancer center of excellence. Move to a center of excellence and stay there. It's hard, but in my opinion, you have no chance in your hometown, and, realistically, your only chance at a center of excellence.
2. insist on as much chemo as you can physically tolerate; do not simply follow the normal protocols
3. get in shape physically; you must be ready as this is HARD

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@rwr

I agree many variables. My sister was diagnosed with pancreatic cancer and had already spread to liver and lymph nodes when they found it. She passed away 6 months later.

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My condolences on the loss of your sister. I have pancreatic cancer with the BRCA1 gene. My younger sister has the same gene but is being treated for esophageal cancer, not going well. I know I will lose her and can't imagine it.

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You can never even guess as to anyones outcome with this horrible cancer.Everyone is so different.Some have beat it but very few.I am in my 19th month of treatment.I agree that if you want to fight ,you have to leave your small town cancer center and get to a center of excellance,mayo,etc.I am at NIH on a clinical trial and have been for 6 months.I begged and pleaded to get into this trial.I am doing well,not sick or anything ,just get tired.,but thats ok.I have had no cancer growth for 4 months.I don't know what the future brings but will continue to fight with Gods help.I have a 11 yr old grandaughter that has no mother in her life,just me,so I fight on for her.I pray you all are doing well and will continue to do well.

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@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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@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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yes you have it exactly right,all these things are what I would like to
know and be prepared for

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@tnt69

yes you have it exactly right,all these things are what I would like to
know and be prepared for

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Have you looked into palliative care? Hospice care?

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