Serious Question - When to stop treatments QOL

I hope everyone can give me some insight here. FIrst it will be seven years since I have been diagnosed with Stage 4 PC with bone mets.

Treatment synopsis

Lupron and Casodex
Lupron and Zytiga
Lupron and Xtandi
This Spring - Lupron and Taxotere
Discovered Bone mets in sinus late july. (two week hospital stay)
August started cabazitaxel.
Labor day - Started two week whole head radiation.
October - Scans showed mets progressing in some areas, and some remission.
Went in for treatment, had some liver numbers rise, so no treatment, but rechecked and they became normal.
November 9 - So I had a six hour day in the chair. Liquids, added calcium, magnesium, platinum based chemo, cabz infusion, and then a blood transfusion.

So my question is basically, when do we stop treatments as we get towards the end of road. I have this chemo and then Radium 232. However that is the end of the standard treatments. My team is looking at Clinical trails.

So although I am happy we with my team, the last 9 days have been the worst of my life. FInally better today.

Has any one considered just stopping treatments, getting rid of all the chemicals in the body, and just live you life as well as you can.

I for one have obviously considered this action, but believe giving up isn't really in my make up. Any thoughts, insight and experience would be helpful.

Two years ago we lost or friend John 16. He had a two year fight after being diagnosed at about age 50 with stage 4 crmPCa. In that short period of time he had every treatment known. It ended up not working and in the summer of that year he asked a similar question as he was still trying to work and was considering stopping. You might go back and read his posts. His chemo was so weakening him that early fall and he decided to stop treatment. I communicated with him several times and it was clear he was not giving up, but rather moving on.

I have never been faced with what you are going through and far be it from me to be presumptuous to offer advice. I do offer my support and know that whatever decision you make will the best for you. My wife has had two bouts of BCa with all the treatments possible. She met many that were end stage and did what she could to support them. When I was being treated our neighbor, in his 50’s was being treated at the same radiation clinic for stage 4 neck cancer. I spent most every Sunday afternoon with him as a friend and to give his family a break. He never gave up, but he knew the treatments had become worse than the disease. When I spoke to our mutual radiation oncologist about our friend, he broke down and confided it was the worst case he had ever treated and knew the eventual outcome. He was being palliative with the treatment and encouraged me to support him as much as possible.

As you make your decision I hope you have the opportunity to surround yourself with your family and friends and seek comfort and calm. As my wife observed, so many people knew when the eroding quality of life was enough and decided to regain control over the balance of their worldly life and prepare for the next. Only you will know what to do.

Best wishes.

halbert said...
Might I suggest reading "Being Mortal" by Dr. Mukharjee (sp?), and he discusses this very question.

KM, I was going to make that same suggestion but Halbert beat me to it. The author is Atul Gawande.

You might also think about talking with an oncology social worker. They're trained and experienced in helping patients sort through tough feelings and decisions. I went to one at a difficult point in my journey and she was very helpful.

Best wishes,

Richard.

Djin, of course, that's right. I was writing from memory...excellent book.

Thanks for the response and encouragement. I purchased a copy of the book today. An actual hard copy, my Kindle will be upset, will need to keep them separated.

I have considered your situation as I fear with time I will be there. My wife would have take everything known to man to extend my life another day. I think I would go that far if it meant she didn’t have to grieve 1 day earlier.

My heart aches for you brother.... I am not where you are, but my wife and I have talked about me not being here, and she needs to step up and know everything I know, passwords, links on computer. How to do everything I have been doing for 47 years. I will pray for you because my hope isn't in this life, but the one to come. Right now I pray Peace and Grace be multiplied in your life and family...
Blessings
Steve

KM, I haven’t responded till now, because I just don’t know the answer.
But I just want to say, regarding that 6-24 months the doctors are talking about....don’t get stuck on that it won’t help and will only hurt. We’ve had more than a few guys here defy the odds after that kind of talk from doctors.
Whatever you decide, even if you decide to stop treatment, don’t get stuck on those numbers