Hello warriors, especially Tall Allen. I'm going on 6 years since Gleason 9 advanced metastatic diagnosis. Had a good run on Zytiga and all the usual other treatments, but just failed last ditch treatment of Pluvicto (after treatment 3). Did genetic testing and no significant mutations. My PSA is now rising rapidly and scans show many new mets and growth in old ones, from skull to feet and everywhere in between.
I'm in my 80's and wondering how much time and when this will get painful. I don't want any more aggressive treatments that might get me a few more months. So if cancer is throughout skeleton (no organs yet) how much time? Not looking for encouragement to keep fighting, or miracle stories. Just want the straight scoop. 3 months? 6 months? A year? For how much of that will I be functional?
Thanks in advance for honest answers. Cheers!
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jersy
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I'm not looking for advice on which additional medications to take. Please read my post. I'm stopping medications. I have tried them all and I'm just wondering how much time.
good morning Warrior. Stage 4 with Mets in several places. Long story but been on Xtandi now since December of 2016. Doing good as a 73 year old . Only the Lord knows when we will check out. That being said I go in Friday for my semi annual CT and MRI. Then to meet with Doc on Tuesday. For bone shot and blood tests. I would hope you have at least a couple more years !
That is incorrect. Medicines like ADT, 2nd line hormonals, chemo, etc., still prevent growth of metastases. ADT continues to prevent endogenous testosterone from activating replication of the cancer.
No one can answer that. I'll take a stab. If you are as fully skeletally metastasized as I imagine then your 3 guesses are accurate--3 months, 6 months, maybe a year.
Your 6 years in so your PC has had time to mutate and so 6 months and under might be closer to a good guess.
YOu dont want to hear it but I was dying of PC prior to my diagnosis. Without treatment you will be in the process of dying. Dying of cancer. There is no quality of life in that scenario. My body and my mind were greatly affected by the process.
I understand, and I greatly appreciate your candid answer. It is what I expected, but need more insight to arrange affairs, etc. I understand that every case is different.
Even though I'll be under some form of treatment until the end arranging affairs is still a concern. Some have been taken care of but at times I think of other affairs that might land on my loved ones laps when I'm gone. I guess if hit by a bus it would have been worse. Not the least bit of preparation in that case.
I got my affairs in order 7 years ago at first diagnosis. No kids just my wife. I switched from Will to a Trust, sold my rentals and retired taking my generous pension and receiving a little less so my widow will be left in a great financial position. We have left the house to our two female friends 20 years younger, in exchange they will help take care of me and move in with my wife after my passing. They will also see that she is taken care of in her old age. If I go tomorrow the transition will be seamless
I have pain so I use a NORSPAN PATCH 20MG as it is a slow release. To top it up when reqired I have Palexia 59 mg this doesn’t get rid of the pain but does reduce it to a manageable level I cam live with Good luck for the future
I too was dying prior to the chemo and medication. Have to th8nk the Xtandi is what I’d keeping me alive. But with this fast 8 years I have had time to enjoy my Wife , kids, grand kids. And yes Great Grandkids. Hoping for a couple more years but I can feel something in my cancer areas that is increasingly different. CT and MRI on Friday and meet with the doc on Tuesday. Hoping for a clean no change but who knows. 🙏🙏🙏
Just reading your bio. Which blood test did you have that returned a 2% chance of having an aggressive tumor? I had the 4k test in which I waited many weeks first for the test, then for the results then the discussion of the results. It returned a 19% of being aggressive or 81% of being non aggressive. Turns out I a have G-9 tumor too. Sucks!
Sorry for the bad break there. My urologist informed me that if the results came back <10, it was almost certain that the tumor would be non aggressive.
Those dying days were weird, interesting, in retrospect very telling. My mental state was worse off than with adt treatment. I was also a zombie. Stared at the walls. Couldnt do any activities. A depression like cloud always present. Night sweats. Daytime fever like symptoms. Bad pain in my scapula and right arm (thought I pulled a ligament). My ribs were all sensitive with just the lightest amount of pressure on them (as when leaning against the couch arm rest). Thought sometimes that I had a chest cavity infection. Appetite got really affected until eventually one day I realized I had finally totally lost my appetite (I thought I had stomach cancer).
You probably heard me say this before but if I had been the mythical American Indian Chief I would have had the wisdom to go to the mountain and die.
But yes. I too although under treatment for only a little over 4 years and somewhat burning thru treatments have had some of the most loving times with my wife and the dx got me moved closer to our son and grandkids. A real highlight of life.
Another benefit of the move here was pure luck. Stumbled upon an extrodinary MO. My son and I commented the other day how lucky. That no matter how this all ends we won't have any regrets about my treatment, my MO.
No one can tell for sure how much time you have left but a year or two would be a good guess. If your affairs are not yet in order, now is the time to do so. I have everything in order including my funeral arrangements. Wife inherits all.
I recommend “Hope for the Best, Plan for the Rest” by palliative care physician, Dr Sammy Winemaker. She also has an honest presence on all the regular social media platform and YouTube.
My dad is 80 in April. He had RP in 2019 after diagnosis, and was told he had 5 years to live. he's had, Chemo in2019. In Feb 2022 when PSA started rising he started Zytiga. it worked for a year then PSA started doubling. The Zytiga has done a number on his muscle mass. He's opted for another round of chemo, as other than his hair falling out he thought first round did not bother him much. This time round has been much harder. He's on NHS in UK. Has been told hes not a good candidate for Pluvicto. Not sure why, and he will not allow me to speak with his doctors. He's stooped now as he has osteo arthritis and needs a knee replacement, but sees no point in such a surgery. He has mets to bone and is castrate resistant. He keeps on with his Zytiga and chemo, but I think his mind is giving up. He asked his doctor awhile ago how long he had till his kids (my brother and I) had to deal with his estate. The doctor said, maybe a year, maybe more, which would be inline with timeline he was given at diagnosis. He keeps working, and goes on holiday. He wants to get to 80 in a months time, but I know his mind is set that he only has a year left.
I've had a brain tumour removed and thought for awhile I would die and leave my then 11-year-old daughter without a mum. I kept going for her and am fortunately still here and tumour free. I can only suggest that you consider taking mood stabilisers/ anti-anxiety meds as you continue on your journey. They do make the days easier to handle. They certainly helped me through some very dark days.
None of us on this earth know how long we have left. but for those of us who have had to process life-threatening and terminal illnesses, I think mood stabilisers and anxiety meds help us, and those around us, to maintain a level of joy of the moment, even though the days are coming to an end.
While you can still remember everything, get your affairs in order, make sure there is a "book" that lists everything and that your descendants know where it is. Your lawyer should know where it is or have a copy. The family should know who is your lawyer. Many a lawyer has wished to have the newly deceased resurrected for a half hour to answer questions. Tomorrow is not guaranteed. Stuff happens. All that is trite and true, but being prepared lifts a load of worry. One page should list all preferred specialists: lawyer, plumber, tax preparer, real estate broker, auto mechanic... to guide your wife as she has to take over more. Once done, you can enjoy the beauty of each day together as it is given to you.
I'm right behind you and interested in responses: 76 years old, Stage 4 for 9 years, masive bone mets, no mutations, about to begin Pluvicto after failed Jevtana.
Hi Jersey, I'm Paula and my husband all the treatments possible, and with having had only 2 Pluvicto treatments, and the Pluvicto shot the cancer everywhere. He had his last Pluvicto treatment on Dec 22, 2022 and he passed away on May 6, 2023. Before he had any Pluvicto treatment he had only bone mets in his skeletal system. Hope this helps you out.
Yours is a very useful answer and I much appreciate it. Very sorry about your husband.
Most others seem to think I want info on how to get my estate plan together. I know no one can tell me how exactly how much time, but the stats matter - or else medical studies would provide no useful info. It also matters a lot how aggressive someone’s cancer is. I should have asked that only Gleason 9-10 should respond. Thank you!!!
Every life has a death sentence. Nobody can tell you how long. The fact is some people can live more life in a few years than they have all of their life. I'm one of those. I agree with getting off the poison.
I just past 10 years last fall with about the same thing you have from the gleason score of 9 to all the bone mets in the same areas with no organ involvement. Here's the difference, I was diagnosed at 52 years old and I'm now 62. Zytiga and prednisone gave me a good run also. I was getting jevtana and it was working well, so they decided to get me on pluvicto, and just like you, after the 3rd dosage it failed. My PSA was stable around th 2 to 3 range and it shot up to 20. They put me back on Jevtana and it has stabilized around 20 for the past few months. I have new mets on my left side of the rib cage. I think pluvicto might have triggered something. To me there is no timetable and I'm planing to do things and go places. My doctors have told me that to treat it like diabetes and that you have a condition to be treated the rest of my life. There will be more medicines coming down the road. Jevtana is making me weak though as any chemo treatment would. Good Luck!
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