I was diagnosed in March of 2018 with bone Mets on almost every bone. Starting PSA was 380 ish. I have been getting treated at MD Anderson from the beginning. Have had ADT, Taxotere, Zytiga, Apalutamide, Cabazitaxel, & carboplatin Combo.
My PSA got down to 3.9 and stayed there for one month and had been climbing for over a year. Looks like it is leveling off at 250 ish. My MO will not comment on my life expectancy, he just says each case is different. But I feel like I am running out of time based on the reading that I do on my own. Can anyone give me advice on what I should do? Or examples of cases that were able to turn their PSA around after such a swing as I have had?
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Raylin
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If you can afford to travel and pay out of pocket, you could get treated with LU-177 PSMA-617. If you are interested, you would want to get a PSMA PET scan to see how PSMA avid you are.
You can also get treated with Xofigo. That's already approved in the US so would be covered by insurance.
I suggest you have two PET scans - a PSMA and an FDG. You can get the FDG PET scans anywhere, but you may have to travel and pay for a PSMA PET scan. The two together will tell you if you are a good candidate for Lu-177-PSMA therapy (which you would also have to travel and pay for, unless you can get on one of the few clinical trials in the US). There are also experimental immunotherapies that target PSMA-avid cells.
Where would you recommend location wise that I travel and Pay for the Lu-177-PSMA. therapy. I am located in Indiana, I am accustomed to traveling for my treatments I go to Houston every 3 weeks currently. I have searched Lu-177-PSMA ans I am not finding anything other than closed trials. No place that I can pay out of pocket?
Don’t ever lose hope nobody ever knows what future has for you . I recommend you to talk to your oncologist about possibility of the remaining options like immunotherapy,Xofigo ,Lu177 and mutation test . Keep your chin up and carry on strongly .
It's a shame they are dragging their heals approving Lu-177 in the States..I was lucky enough to get into the Vision trial which uses Lu-177 and in my case the results have been spectacular, my PSA dropping from 2300 last September to 142 today...Don't get all excited, it does not work that well for everybody and some can not tolerate it because of side-effects.. By the way, I had no pain or symptoms with a PSA of 2300 which was doubling every 5 weeks..
What is your current treatment? There are other clinical trials out there. Then there is re intro of chemo. What is your MO telling you? You need to explain a little more.
All I can say is that you indeed are in deep shit, sorry but that is the reality. It is maddening that you never got diagnosed much earlier in the war. There is no point in sugar coating where you are at. The med boys are throwing the works at your PC now. As is my manta to live large, love those you are with, and try to make a modified bucket list and do some things, no matter how limited you might be or feel, and get some joy from your final days. In terms of how long you can keep on with the fight, that is something that perhaps only God knows, but also in how you feel and how organized the end of your life.
I have made plans to depart the planet when my quality of life drops to the point where there is no quality left but only pain and more pain. I do not intend on rotting in some palliative care facility, if I can help it.
At some point, most of us on this site, will face where you are at, which is why I harp on getting into treatments as soon as possible, because once the beast is out of the closest, you can not go back and close the door.
I wish you the best and hope that you can have some good days and that you do not suffer.
Life can be a bitch and your story is heartbreaking but a fact of life as it exists today, with no cure or chronic treatment for advanced prostate cancer beyond the latest team of drugs that are mostly palliative in nature, only offering a month or a few more, but it is what it is. Good luck pal!!
Yes, it means that I intend to have control over my final day, if I am fortunate to be able to, i.e., not incapacitated and unable to do so. It is now legal, with a pile of paperwork, but at least it does support our making the final curtain call and dying with dignity. Everyone is different, but once I am no longer capable of enjoying life, both mentally and physically, then that is ok in my books.
I have not given up yet, but have suffered to the point, where the crossroads are up ahead. How far ahead, I do not know yet, for as long as the light shines bright, then I will march on.
We do not talk about death and dying in our society, when in fact we will all die at some point. This creates, in my view, a terrible dilemma for the terminally ill, who are trapped, when in fact, we should be offering support in these situations. I am not advocating what anyone should do, but think it needs to talked about.
I suggest you spend some time in a palliative care unit at any major hospital to get a better idea of what the final days for some will look like, and then, it will give you some education as to the choice that you want to make, or not.
I find it amazing that we have more compassion for our dogs and cats when it comes to end of life suffering. People refer to it as "suicide" which gives it such a negative connotation. We have "Death with Dignity" here in California and if you follow the process, your cause of death is listed as cancer, not suicide.
All the treatments and other medications we take for cancer are to help us live longer and not suffer. We should also have a prescription available for when nothing else can stop our suffering. I look at it as one more medication we have to relieve suffering. We should have control over how we die.
I plan on getting mine when the time comes. It will be ready if I need it. If I decide not to take it, that's OK too. It's not something you can get at the last minute so it's better to have it and not use it then need it and not have it.
I don't need to spend anytime anywhere to witness others what I'm personally going through with this disease. If anyone understands where you are coming from, it's me and guys like me. I just asked a simple question.
Sadly, no one, not even your oncologist can answer your very important and most personal question. How long will I last could be replaced with How will I last? I hope by working/playing your way through your bucket list. As others have noted, there still are options for treatment...there never were options for "cure."
Some men can go on with mCRPC for a long time and others die relatively quickly.
Some doctors like to play god and predict likely life spans but really it is a mug's game with more chances of being wrong than right.
Doubtless you have read the statistical predictions but you are a sample of one so although they are indicative they say very little about you personally apart from giving you a likely mean and minimum and maximum life spans.
Therefore my best advice is to get on with things and enjoy life as much as possible while you can.
I was diagnosed Nov 2018, like you Mets to every bone, marrow invasion in Femurs and PSA of 1386. Oncologist at the time said from what he sees in the amount of progression of Mets etc he said 44 months from his experience. Fortunately I responded far better to Chemo and ADT than anyone expected and got my PSA down to 0.028. Everyday I deal with pain but I'm more positive about my chances than when I was first diagnosed. I don't fear death because I know I will no longer be in pain and I will bear it for my Wife and children, they make the biggest difference and keep me strong.
I know it's tough, today has been one of my worst days of pain and the most amount of Oxycodine and Oxycodone I've taken so far. I cried this morning out of despair and my Wife hugged me till it passed. I'm a little more on top of the pain now but constant pain can really get you down and you have to let those emotions out sometimes and feel a little better for it now.
I wish you strength and hope you can find the right treatment..
I find it impossible to click "like" on a reply describing so much pain, so instead I'm replying to say thanks for sharing, and hope you get your pain under control. I'm disappointed it's getting worse with such a low PSA. Any idea if the weather is a contributing factor? The cold wintry days here definitely affect how I feel both in body and mind.
Yes it can get very cold here (-37C the lowest I've know but normally between -10 and -20C) but luckly this year it has been exceptionally mild. The biggest problem is our 100 year old cottage, it's a nightmare to keep warm. I hope our new house (20m away) will be ready in Feb and has Geothermal heating and is very well insulated with much more space.
I asked the pain Doctor why I have so much pain when my PSA is low, she seems to think because I was diagnosed so late and with Marrow invasion in Femurs caused a lot of neurological damage. They did an MRI before Xmas I'm waiting on the results. I had PET scans before and after Chemo.
One of my symptoms is I jerk my body during my sleep, like I've been shocked or when you dream of falling, it's strong enough to wake me. The pain comes in waves mostly at night and early hours, then my whole body goes stiff a little like I'm being electrocuted, it can be quite disturbing to be woken like this. I have been like this for 14 months with no improvement, it can get you down.
That would get me down too! I get grouchy really fast when my sleep is interfered with. Have you tried gabapentin or a benzo? I've heard of others using it for nerve pain. I take clonazepam for anxiety, and both that and medical marijuana (not recommended at the same time!) help the muscles relax, which can help with pain.
I think my pain may be slowly improving, but it's really difficult to tell. Mostly it gets my hopes up with a few nearly pain-free days, then I overdo the exercise and get another round of shots and there goes that.
We have an uninsulated A-frame in Vermont as a weekend getaway. We can heat it, but not evenly. It's an experience in moving up and down the couch to find the right distance from the wood stove.
As others have noted none of us know how long we will live or how we will die, Having this disease makes us think the worst, when in reality it will most likely be something less.
I’m 6 years in to this fight and have also run through most standard treatments and LU177 Vision trial. While my PSA has only reached a high of 125 in 6 years my typical doubling time is 3-4 weeks ( currently in second time through chemo).
My thoughts, keep challenging your ONC for new and standard treatments. I think fighting this disease when it’s small is better and to keep hitting it hard helps improve your quality of life. I make sure to get daily exercise, try to do things that make my life normal, tell my wife I love her several times a day, and generally look for ways to not think about this disease.
This fight is hard and most people have no idea what we go through or what these treatments do to us. When I see ads taking about people’s new normal, I want scream, the new normal sucks!
Live your life, do more of the things you enjoy, and do not let this disease run your life. You have a major support network with this group and we are here for you!!
I understand it's very difficult not to think about the survival expectations in face of a progressing disease, and most of us want some sort of "certainty" for the number of years we have ahead. Fortunately/unfortunately for us it is a heterogenous disease and men is seemingly similar clinical conditions may have different outcomes.
I'd suggest focus on what's at hand. Lots of good suggestions here on where to take it next for you. Have you done any genomic testing?
Stay mentally strong and hopeful. The battle is far from over.
As others have pointed out, nobody can say how long you will live. Have you given any thought to HOW you want to live? For example, some men will fight until the bitter end, and want to die with chemo in their veins. That would be the cancer equivalent of going out with your boots on. Others choose to stop fighting when it appears pointless, and decide to spend their last days at home with family.
I recently read "Being Mortal", which was recommended by whatsinaname , and it had an interesting observation: For people where treatment was unlikely to work, those who choose hospice typically live longer than those who choose treatment. It makes a certain amount of sense if you think of it as changing the focus to not making things worse.
Whatever choice you make, there's plenty of people here with experience ready to support you. There's even a caregivers that have stuck around after their loved one's passing to share their knowledge and support, since most people who have been through hospice can't really comment on it.
Raylin have you been genetically tested? There are some rare mutations that may align with a better treatment approach. I just read of a man with a rare mutation found in 1% of prostate cancer. He was treated at MSK. He had likely less than six months according to his doctor and now has undetectable PSA. He was a real success story but not an average case. However, you never know. I would push for this testing if you haven’t had it.
I love this approach, and there are lots of drug trials and scientifically run programs and options. For those who cannot afford the latest, tough, but for those who can, go for it because as some point, it the results of research that will lead to a cure or making our apc a chronic disease.
I think it’s better that he doesn’t comment then telling you a dismal outlook. Plus, he doesn’t really know. I’m sorry that I don’t have med advice for you . I will follow your progress. Stay in touch here. A lot of good people pulling for you ... Don’t give in now. You’ve come too far stop now.
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