by Sartor and de Bono. Maybe I found it here. If so, apologies for repeating.
I found Table 1 very interesting. For STAMPEDE, for example, it found docetaxel plus ADT improved Median OS from 45 to 60 months. That's why I opted for docetaxel. Yippee, I thought, 5 years, and I shall work hard to be on the long tail, maybe 10 years!
That's why I was so thrown (see previous post) to be told, a few months after end of chemo, that I am now Castration Resistant - CRPC. When I queried, I was told that the ticking clock for OS started at Dx, and my PSA was already off the wall (960) when Dx.
So now I look at Table 1 for "Recurrent disease after ADT and docetaxel". The start time for OS is much better constrained, cos anybody told they have CRPC will be being monitored every 3 months. Several studies (admittedly published 6-8 years ago) give OS for the Control as about 12 months, OS with treatment 15-16 months. So, with no new treatment, I have Median OS of a year, with treatment maybe a few months longer. This suggests two questions.
Is a few extra months worth the loss of QoL (quality of life) from side effects of the extra treatment?
Can a significant number of people from this community of 4000+ members reassure me that they have lived with CRPC for x years, where x is 2 or more?!
And yes, I know I am seeking a biassed answer, but optimism and good news must themselves help OS!
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rpol
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I was diagnosed with aggressive PCa at the end of May, 2013. My PSA at diagnosis was a little under 1700, Gleason 8, and extensive bone mets. I was immediately put on Zoladex. When my PSA started creeping up I was switched to Firmagon (for a year). At the end of that period And after being deemed castrate resistant I was put back on Zoladex and my medical oncologist added Xtandi (Enzalutamide). It has been a year now and other than fatigue and the occasional hot flash I am managing quite well. I was 67 when diagnosed and will be 73 in a few days. My last PSA was less than .008 (undetectable) so I reckon I have many good years ahead of me. My advice to you is get a good oncologist (one you trust), get yourself educated about this damn disease, and stay positive.
rpol... I understand how you are feeling. It is frightening and disheartening...this steady progression of this disease with very few breaks and knowing where we are all ultimately headed. I think you should do what you need to do for yourself based on what you really desire. QOL is so important. ❤❤❤
I would be interested to hear your criteria for what constitutes a good oncologist. I have found it hard to find one who thinks a bit laterally, who can for example deal with the side effects of the various medications and processes. Most seem to be focused narrowly on prescribing treatments but few are able to offer a more holistic approach that deals with the consequences beyond those treatments.
I think it depends to a great extent on where you live and if you can travel. I'm lucky that my small (15k people) community has a regional medical center with a very good oncologist. By that I mean that he keeps up on research and treats me like a human being. The rest of his team seems highly competent as well. However, as you would expect in a highly litigious environment they hew to the party line so you have to do your own research on supportive therapies. At least they don't look down on them.
Most follow standard of care and very rarely deviate of think out of the box. It's all about the almighty ins companies. I wish I had seen Snuffy Myers before his retirement.
Snuffy was the best at managing both treatment and side effects, probably because he spent 18 months on ADT himself. My current specialist, Dr. Sartor is good also, however right now he is mainly following Snuffys protocol of medication checks and balances since it is still working. He has made some minor adjustments to ADT meds in the past year when SE's became too difficult. He is sympathetic to SE's which is a good thing.
Hi, im only 1 year or so into mcrpc so i cant talk for myself but there are many here that have been around many many years. Mean OS statistics depend on too many variables to be accurate. So many of us are blowing away even the latest Mean OS numbers.
I did chemotherapy as well, not for a statistical OS benefit of some specific number of months that I may or may not get. I did it to give the myself the best chance of surviving for as long as possible.
I find you really have to forget about the "numbers" and focus on living in the present tense. No one has any guarantees of living another minute, the present moment of time is all we have. I find that reading OS statistics reduces my quality of life more than chemo. Life is binary, 1 or 0. Right now we are all equal, we are all a 1. Celebrate your 100% life, that's my advice.
Stop asking yourself, how long do I have to live. No mere mortal knows the answer. You are a statistic of one. Get good doctors, read all you can bout the disease, and be positive. CRPC for 13 months and counting. 20 year survivor, when initially they gave me 5 years.
2. I have to make decisions like: should I visit my eldest son and grandchildren on the other side of the world (NZ) this Christmas or can it wait til next. Waiting would fit other family issues better, but maybe I dare not.
It's never a good idea to put off anything that's important to you. Never assume you have time. That's the gift we've been given with cancer. We live in the real world now.
I agree with greggs57... when my husband was diagnosed last year we decided no putting things off- within reason. But especially when it comes to visiting family that you love...I would visit every chance you get❤
Summer Christmas in NZ - a no brained in my opinion. I believe I will get cured, but I also know I might not, so I live in the present, spend money when I want and try to enjoy every day. A good friend of mine has had PCa for 12 years; he lives modestly, but takes a long, luxury overseas vacation with his wife every year. His explanation, “cover the Earth before the earth covers you.”
I agree. I'm going to Europe this fall with my wife since my remission is stable at this point. If you are doing fairly well, take advantage of that. You don't want to be saying "I wish I had gone to.... or had done ...." Right now is the window of opportunity, not some day in the future. Of course things could easily take a turn for the worse anytime, but it's more likely to happen if I wait until next year. Do it while you can, that's a good philosophy for everyone.
Originally diagnosed March 2013, G9, PSA 68 no mets. Initial treatment radiation and ADT. After 2 years ADT was stopped. I was in remission for a year. PSA started rising and I went back on ADT but developed CRPCa and bone mets a year later. Now I’ve on Zytiga and Lupron with an undetectable PSA for the last 18 months. So I’m still kicking two and a half years after my CRPCa DX. Pretty much taking life three months at a time now :). Good luck.
I've had lots of good advice, don't put things off is the gist, but only a few answers to my main question. Ryderlake2 said one year tho hopeful of many more. Tjc1 said 1. BigRich said 13 months. You're the first to give a bigger number, 2.5 years. That cheers me up a bit. Hope you have plenty more years - low PSA sounds really hopeful.
I don't see how it helps you to know how long you have. If it's a matter of having time to "get your affairs in order", we should all do that anyway because you never know. Live your life to the fullest, regardless of your "prognosis". The death rate is 100% anyway.
Since my diagnosis, I've never been happier in my life. I think letting go of the future is a big part of the reason. There's so much freedom with life in the present tense. I realized I was carrying this burden and having cancer taught me to let it go.
Other people will experience my passing sometime in the future. But nobody has a future so learning to live in the "eternal now" is something I recommend everyone put on their bucket list.
I tend to go with the longer 5 year survival as there are so many new treatments emerging. However, there maybe some QOL issues that effect your enjoyment of travel.
As we get older I appreciate travel insurance which I had never previously considered. We nearly had to cancel a recent two month trip due to medical issues and life complications. Our neighbor had an expensive European cruise planned this fall but recently died from cancer. Now his widow is taking a friend along.
Travel while you are physically able as it won’t get easier. There will also be added complications due to treatment schedules and side effects. My advice is do it soon and have fun with the planning, too.
We all have our stories to tell and basically are here on borrowed time anyway with or without APC so I say to you all my Brothers. Live what life we have left with the intention of screw it I'm just going to do it. Buy that dream car you always wanted, take that vacation of a lifetime but always stay positive. As for me I've always wanted a classic BMW 540i so I searched for just the right one and it now sits in my garage ( on rugs of course) one notch off my bucket list. Never give up never surrender. Leo
Forget the statistics. As BigRich said, you are a statistic of one. Remember, 67.524% of statistics are made up, and that statisticians are people who get paid to make errors. Speaking of which.....Q. did you hear the one about the statistician? A. Probably. Here are some insights (not mine) to keep statistics in their proper perspective :
George Burns said, “If you live to be 100 you’ve got it made. Statistically, very few people die past that age.”
George was on TV, puffing on a big cigar while being interviewed on his 100th birthday. The interviewer commented on the apparent incongruity of longevity and smoking. George: “20 years ago my doctor told me that smoking was going to kill me.” Interviewer: “What does he say now?” George: “I don’t know. He’s dead.”
A mathematician, a physicist, and a statistician were out deer hunting when they chanced upon a large, magnificent buck in a clearing. The mathematician fired first, missing the buck’s nose by just a few inches. The physicist then tried his hand, firiring a shot that just missed the buck’s tail. The statistician jumped up and down yelling, “We got him! We got him!”
If your head is in the freezer, and your feet are in the oven, on average you are comfortable.
A male statistician and a woman were asked, “what is the probability that if you went out into the street you would see a dinosaur?” The statistician went through an agonizing series of facts and figures and came up with the answer, “one in three trillion.” The woman instantly rebutted, saying “the odds are “fifty-fifty. Either you see one or you don’t.”
Lastly, a quote attributed to Mark Twain. “There are 3 kinds of lies......lies, damned lies, and statistics.”
Hope this brought you more smiles than groans. Now, screw the statistics. Go out and live today (and every day) to its fullest, and be thankful for all the ways you are blessed. 😎. The urologist who gave me my Stage 4 PCa diagnosis in June, 2015 told me I had a 28% chance of being alive today. Think I’ll go out golfing. 🏌️⛳️
If interested, you need to persue holistic methods on your own .up to you. Half of the guys that have survived for many years and decades were told they’d be dead long ago. Fact is we all live on borrowed time once we have APC . Make the most out of the here and now. Not to be morbid , but there are no guarantees for anyone of us. Take care of yourself and you’ll be here awhile. Don’t listen to dismal stats..
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