Stopped treatment - how long time until death?

My dad has had pc with mets since 2005. He's tried everything and was supposed to have a break from Jevtana until august. But his condition is poor. He has pleural effusion and struggle with his breath when walking. His legs are also swollen and he struggle remembering things. Beside that, he's up watching tv, eating etc. Today the doctors told us that he Will not get anymore cancer treatment. From now on the palliative team will take care of him.

Anyone with experience of how long time it took from they stopped treatment until they died?

He' s a fighter. A normal person like him would probably have died a long time ago, but he has lived with the disease with mets for 13 years now

alephnull said...
No one knows.
Every man is different.
Ask the doctors for that guess.

Memorial Sloan Kettering might have a nomogram to make that GUESS.

Actually I don't want to know, I Just hope that he will live for a while. That's why I wanted to hear other stories.

Where's the link to the statistics you refer to?

Sorry to hear that your Dad is having these other issues that are preventing his treatment for the cancer, itself. I'd guess it is difficult for anybody - even doctors - to predict just how long somebody might live with multiple things happening in the body.

You still might be able to have Palliative Care, even if not doing a cancer treatment. Ask about it at whatever hospital you would take him to in the event of a medical downturn. Maybe also talk with them about the options for Hospice Care, too. Some of the specialist in that area can help make him more comfortable, and also provide help and respite for struggling caregiver(s).

I would also make sure that everybody is "straight" on what you Dad might want done/not done in the event of his serious medical decline, or approaching death. If applicable, refresh any Power of Attorney for Health Care, or Advanced Directive for Health Care documents. Having to go to the hospital and "muddle through" these issues totally unprepared can be really difficult.

Last year I knew a man who eventually died of complications from his advanced prostate cancer. In the last months the family had to deal with mobility issues because of some stairs in and around the home. They even went so far as to find and install a small lift that would get a wheelchair up onto the porch. He had a BRCA mutation and had been treated with the PARP inhibitor Lynparza and also a tough Carboplatin chemo. He too, had to stop as adverse events and side effects began to pile up. He did not die of the prostate cancer, itself, but his body formed uncontrollable effusions in and around his heart and lungs, which gradually took their toll on all organs and his heart. The most rapid decline happened in a period of a month or less, particularly after they discontinued some interventional draining of some of the accumulating fluids. Each experience is individual and unique.

Your family may have already seen this video before.

passing-on.org/

These are hard times. But they can also contain indescribable moments of love and caring, and sometimes even some laughter and hugs.

Take care. Keep posting. Vent if you need to.

Wishing you the Best,
Charles

Dear Smurfine,
My Dad battled 16 years after his initial diagnosis. And like your Dad a fighter. I'm convinced as long as he thought there was a chance to beat this thing he gave it his all. Eventually the chemo/drugs/cancer took their toll and his body could not fight any longer. It was worn out. His mind wanted to fight but his body would not allow it. That was tough thing for him to reconcile as he felt he was letting the family down. It's true that no one of knows the exact time when death will occur.Only God. Some rally, beat the odds and remain with us for a time. Others do not. Depends on age, progression of disease, other health factors and stuff we don't even know about. My Dad was with us for about eight weeks. Majority of that time was good.
Talk with his Dr.'s about end of life care. Dad passed at home surrounded by family and I believe with minimal discomfort.
I'm so sorry for what you are going to have to go through.
Take care of yourself and those around you while taking care of Dad.

You can get a pretty good idea from his PSA doubling time. How quickly does it double? It can only double so many times before it overwhelms the body..When the 2000 doubles to 4000, there is usually not much time left......He should be getting monthly PSA tests to monitor this if he cares about it....

There is an experimental treatment called BAT (bipolar androgen therapy) that is very simple to perform if you can get an Oncologist to do it...he would get a large dose of injected testosterone every month for 3 or 4 months. In clinical trials, it has been demonstrated that the big "T" boost overwhelms the cancer, stops them from multiplying. As a "side-effect", most patients feel much better for a few days at least as the "T" shot wears off quickly..

The PSA is coming from somewhere....There are not very men alive with a PSA of 8000....

There are all kinds of scans...Bone scans, PET-CT, some are far more sensitive in detecting cancer than others.. Is your Dad in any pain? Is he losing weight ?

I'm sorry...you are getting some really bad information. PSA is not a reliable indicator of the processes which bring about body shut-down. In fact, PSA is pretty much a useless measurement at this point in your dad's case development. I'm surprised they are still taking & reporting it. There is a absolutely huge range of PSA values that people have lived with, and have died with. Most men don't die from the primary prostate cancer, per se; rather, they most frequently die from the secondary PC tumors which spread to other organs which then slowly cease to function...and that organ metastasis is not necessarily dependent on or directly associated with PSA.

Bodily functions are now a key indicator of what doctors look at to develop their own rough time estimates once a patients stops treatments and shifts to palliative care and hospice. The cancer(s) (primary, but most typically in PC cases secondary) typically starts interfering with functions, like the liver. This may be seen in bloodwork...although, again, once on hospice care, there is really very little reason to continue monitoring blood; instead, they will a) take steps to keep the patient comfortable, and b) respond to the symptoms as they occur...very little testing/scanning going forward except in the context of providing better palliative care which may still involve some interventions. Besides indicators in the blood values, there are physical signs of liver shut-down, too. Weight loss, and the loss of the ability/interest/willingness to take in nourishment are other physical signs that doctors may advise to watch for as functions shut down.

His is book, Being Mortal, author Dr Atul Gawande describes the ODTAA syndrome to describe increased likelihood of passing — when it seems like the pace of problems start occurring as One Damm Thing After Another. This book, by the way, is a tremendous help to caregivers who want to provide the best loving care in the final time together...I highly recommend it (it will be beneficial to read sooner rather than later).

best wishes

Post Edited (NKinney) : 5/31/2018 2:40:46 PM (GMT-6)

Just a note, those secondary tumors men die from, are still prostate cancer.

If PCa becomes metastatic to the lungs or bones and then he dies. He doesn't die of lung or bone cancer.

He dies of metastatic prostate cancer.

NKinney said...
I'm sorry...you are getting some really bad information. PSA is not a reliable indicator of the processes which bring about body shut-down. In fact, PSA is pretty much a useless measurement at this point in your dad's case development. I'm surprised they are still taking & reporting it. There is a absolutely huge range of PSA values that people have lived with, and have died with. Most men don't die from the primary prostate cancer, per se; rather, they most frequently die from the secondary PC tumors which spread to other organs which then slowly cease to function...and that organ metastasis is not necessarily dependent on or directly associated with PSA.

Bodily functions are now a key indicator of what doctors look at to develop their own rough time estimates once a patients stops treatments and shifts to palliative care and hospice. The cancer(s) (primary, but most typically in PC cases secondary) typically starts interfering with functions, like the liver. This may be seen in bloodwork...although, again, once on hospice care, there is really very little reason to continue monitoring blood; instead, they will a) take steps to keep the patient comfortable, and b) respond to the symptoms as they occur...very little testing/scanning going forward except in the context of providing better palliative care which may still involve some interventions. Besides indicators in the blood values, there are physical signs of liver shut-down, too. Weight loss, and the loss of the ability/interest/willingness to take in nourishment are other physical signs that doctors may advise to watch for as functions shut down.

His is book, Being Mortal, author Dr Atul Gawande describes the ODTAA syndrome to describe increased likelihood of passing — when it seems like the pace of problems start occurring as One Damm Thing After Another. This book, by the way, is a tremendous help to caregivers who want to provide the best loving care in the final time together...I highly recommend it (it will be beneficial to read sooner rather than later).

best wishes

Thanks, but on the other answers here psa still seems to have a connection to the development of the disease? I don't know what's correct here but his history is quite unusual. A normal person would probably not have lived as long as he has. Now his psa is over 4000, but I don't think they will measure it anymore

Hello ... I just wanted to say that I'm thinking of you. My Dad is in the same position. He was taking Zytiga but it didn't work for him and so that was stopped... I would say around 2 months ago. Like your father, he's still eating but he's very out of breath and needs a walker or wheelchair. This has worsened over the last few weeks. Like you.. you kind of want to know how long but I'm afraid it's a very difficult question to answer.

I took my father's notes to another oncologist not so long ago, he looked at a scan taken back in December, we discussed a lot of things and we were told 3-6 months for someone in Dad's position. However.. I'm not sure if that was from the time the scan was taken or from May when we went to see him. Please note, my Dad wasn't with us and he was purely going off what we said and by looking at the skeletal involvement. He also told us that 'people surprise us'.... so... I just try to take each day as it comes, helping my Dad... the thing I struggle with is when to take the time off work. I teach so have a holiday now and I'm able to be with him 24/7, I return to work next week and other family members will take over... I will still see him every evening... But... I'm not sure I want to go back to work because I don't know how long he has.

I'm sorry I can't really offer anything else.. I do hope that your father isn't in pain... My Dad isn't fortunately, just incredibly week. I hope that you have lots of support... It's such a tough thing to go through... I hide my tears but some days I fall apart ... You can only try your best and be strong for him.

It sounds like he has done incredibly well for a long time. My Dad takes dexamethasone (a steroid) morphine (in tablet form) liquid moriphine (which along with his normal dose he takes when breathless) and has recently been put on cyclizine (anti nausea med) haloperidol (actually an antipsychotic but in his case is used for nausea/vomiting) and a whole host of other things to help with bowel movements etc. I'm not sure what meds your father takes but perhaps see what's available to help.

Lots of love to you and your father.

K X

With regard to psa... They stopped testing my Dad when it climbed from 280-488 in a few weeks. If I were you, and it's only my opinion, I've been through all of your concerns... What does this psa mean etc.... If they are stopping monitoring psa it's time to focus on making your father as comfortable as possible, as happy as is possible. Make memories ❤️ And push for all the extra help you can... We live in the UK so it might be different from where you live but my Dad has palliative nurses coming out to check up on him.. I did ask the palliative care nurse the other day the same question you're asking and she told me she thinks he might hold on a little while longer yet... But again.. Nobody knows. Feel free to message me anytime X

Thank you for sharing your experience Halbert.

Your experience further shows how everyones case is different, my Dad has been on morphine for a number of months now. Although he’s never really experienced pain, just stiff, weak and uncomfortable. Perhaps without morphine he might be in pain.

A very moving account to read which will no doubt help those of us in similar situations. Those of us not really knowing what to expect.
May your parents be resting in peace. ❤️

Smurfine78.... reiterating what Halbert has said ... take advice from the hospice. They will guide you through this and put things in place so that your father is as comfortable as is possible

and as we all know the kind of misleading information is a staple of internet sites...it is not intentional...it is well meaning...but it is a game of telephone...and there are no sheriffs here...nor should there be...folks come here...get help...want to reciprocate that help...and the game of telephone begins...btw for those not familiar with telephone...the result is much like gossip...tho gossip is meanspirited and well intentioned advice on healing well is not{sarcasm and frustration vents excluded}....caveat emptor ( buyer beware) and again communication even face to face is difficult...on line and with multifaceted egos makes for a challenge on any subject ( mostly men...not all) yhe answer forgive and forget...grudges are smudges