Hi, I’m new here. — Yesterday my current doctor of the 5, given me in 16+ months, told me that I had castration-resistant prostate cancer and asked me in my second meeting with him if I had a living will. He told me that I may live a year or two at most. Those who live for ten years don’t have castration-resistant prostate cancer. The cancer has metastasized to my bones and liver, according to the official interpretation of my scan. My prostate cancer was diagnosed at age 77 by bone biopsy a year ago July 1st. I’m now 78 years old. I’m not overweight, don’t have high blood pressure, don’t have heart disease or diabetes. I take no medications, except for prostate cancer. I have no pain. — Initially I had aches that seemed to move around and be muscular and I was very weak — from low hemoglobin. First I was put on bicalutamide, prednisone and Xgeva (denosumab). Later I was switched to Zytiga (abiraterone acetate) with an injection of lupron every three months.Then I was put on Xtandi with lupron once per month. The Xtandi didn’t lower my PSA, but seemed to have more side effects than the others. E.g., my hemoglobin went down again and my blood platelet count went down, causing a nose bleed. I was taken off Xtandi and put on darolutamide (Nubeqa) with lupron once per month.My PSA plunged in less than a month on darolutamide from the 400s to 5.72. The doctor said, “This shouldn’t happen!” He sounds like he expects to give me docetaxel next and then in a year it’s inevitably the Grave for me.I’ve read that you shouldn’t let any doctor tell you how long you have to live. They don’t know. And, of course, the effects of suggestion from an authority figure, e.g., hypnosis and “Voodoo,” come to mind. What do you warriors think? Should I buy a shovel? YinYin.
Help: Metastasized Castration Resista... - Advanced Prostate...
Help: Metastasized Castration Resistant Prostate Cancer!
Yes, buy yourself a shovel... and hit that doctor over the head with it.
A prediction of exact lifespan for a man with mCRPC is based on the statistical "median" survival of large groups of men. Suppose that number came out to be 16.72 months... that means half the men died sooner than that and half the men died later, and possibly not a single man actually died at exactly 16.72 months.
So the good news is, depending on the success of the remaining possible treatments available to you (and there are several!), you MIGHT live much longer than your doc says. And of course the bad news is, depending on the success of the remaining possible treatments available to you and on other factors that are beyond the ability of anyone to predict (especially as one gets into his late 70s), you MIGHT live even fewer months than your doc says.
The last thing I need is a doc nagging me to get my affairs in order. I have a wife for that.
lol , love that shovel bit. Yea, my last oncologist used to do that. I’d walk ( shuffle ) into his office ….. he’d ask me if I’ve been comfortable, shut off his computer screen …then put his arm around me and ask if I have my affairs in order , gathered my loved ones and am I working on my final QOL bucket list items. My new oncologist says very little, might be better yayahahahaya.
I guess he wanted to keep things real and not make me have false hope …. But …. here it is , 48 months past when he wanted me to enter hospice and I’m still alive and kicking. Feel like I have a while left too. The point is that no one necessarily knows when we are going to croak. Not even our doctors. They can guess within established medical norms, but all of us are different and no one actually can say when we are going to croak. Just my IMHO, ….one man’s experience.
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just curious. On what basis did he suggest you go to a hospice? I don’t see any reasons from what you described.
I was in excruciating pain all over my body specially pelvis bone pointers and a highly met deformed lower spine ( curly cues that look like rams horns on several ) ALL my bloodwork had tanked WELL below the low limit range , some bouncing off zero (/ checked every 7 days ) …except calcium and ALT … up at 300+ ( might have been alp , I forget ) and I was losing 17 pounds avg a week. I was very sick.
My skeletal structure is heavily paved with Mets and Mets have destroyed nearly all my bone joints. Even now I have a shoulder that wants to fall apart and fingers in both hands have stopped working properly. Left knee 3X normal and right knee 2X larger than normal, both deformed by Mets. And I could go on ….
My main team of 5 doctors ….PCP, oncologist, two radiologist, hospice team etc. “ all “ encouraged me to enter hospice immediately … I had never ever had any PCa treatment before that. I decided to try ADT ( Lupron Xtandi ) before the Urn … and luckily lucked out with the ADT. Blew my med team minds, even today they think I’m a freak, and “ still “ the thought of hospice seems to be near the surface somewhere, every time I visit with one of them.
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Send that doctor a Happy New Year Card and say you hope he makes it to the next one.
You can buy a shovel to plant a tree. Darolutamide shows an excellent response, so wait how long this lasts. After a Docetaxel therapy there is a different chemo called Cabazitaxel which will work then. I would expect you to live longer than your doctor said.
Docetaxel sounds like a good next step.
You are having an excellent response with darolutamide. When daro fails and there is radiographic progression of the cancer you could talk with the doctor about continuing with darolutamide and add docetaxel.
Consider to talk with your doctor about getting a direct biopsy or a liquid biopsy to see if it is possible to do histological, IHC and genetic studies .
At this time you could request Provenge a vaccine shown to prolong life.
There are other treatments available such as xofigo (Ra 223), Lu 177 PSMA, Ac 225 PSMA and J591 in clinical trials, cabazitaxel chemo with or without platinum compounds, and depending in the cancer mutations olaparib, rucaparib keytruda etc.
Sometimes doctors behave like God and say crazy things. Prostate cancer treatments have made tremendous progress in recent years, even for castrate resistant metastatic prostate cancers. I bet in the hands of good doctors and proper treatments you may live well into nineties.
Yin-Yin wrote --- " ... Should I buy a shovel? ... "
Waste of money if you plan on being cremated. 😀
Just have yourself thrown out in the garden, that's my plan
us-funerals.com/human-compo...
Wife will have her sister take us out on her 42' Chris Craft and drop me overboard into the Gulf of Mexico 👍👍along with a double JW Blue and a glass of a nice Organic CA Merlot
Even better! Fish food, wider circle of distribution.👍
I already had many distant lymph node mets and many distant bone mets when I was first diagnosed three years ago. I got good results from ADT and chemo. You can read the details in my profile.
If it comes time that there is a need for chemo, don't let it scare you. It worked very well for me.
this is from Tango 65’s post 3 mos ago, on Darolutimide + Docetaxel. Mike
yeah - buy a shovel AND an ax. Dig a hole, put the Dr in it, plant a tree on top of him. Save the ax for cutting the tree down years from now.
My diagnosis in 2015: Stage 4, aggressive, Gleason 9. I was healthy, fit, positive and actively engaged in my profession and community. What I have learned during the ensuing 7 years... Like all professions, oncology has it's super docs & nurses and it's less extraordinary ones. My first oncologist was an A+ and when he left, my new one was much more difficult to communicate with. But, he was first a scientist, secondly a patient centered doc. With his cutting edge research taking 3 days of his week, he was often overworked and tired on his 2 clinic days with patients. I found that if I was very well organized, did my research and sent my questions via the portal ahead of time, he was much more dialed in and willing to discuss my questions and concerns in greater detail. The big take-aways from my experiences with him for 5 years may benefit you... "Everybody is different" - the docs give their best information and advice, but individual variables influence greatly; science is changing rapidly, what was not available last year is mainstream this year. Another quote from my doc that guided me... "my job is to keep you alive long enough that something new comes along and keeps you alive longer." He has been right on and I am still engaged, active and living fully. I get about 9-12 months from a treatment and when it fails, he has another strategy lined up. So, educate yourself, find someone to help you dig into the science; be well organized and ask intelligent questions; get as healthy as you can, especially fitness and nutrition; and most importantly, live to the fullest, every moment.
Thank you for the humour, love it - we need more of this!
LMAO
Back from breakfast docked at Costa Maya and had 4 double Espresso plus coffee with 2 pastries and pancakes/syrup plus veggie side. Next up is gym and stationary bike. Have a double JW Blue to sip here in cabin or on the verandah.
Maybe buy the shovel, but keep the receipt! If you don't have a 2nd opinion medical oncologists, get one now.
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