As I've written, my husband stopped all treatment this past July after Lupron/Xtandi were causing worsening SEs while PSA was doubling/tripling from undetectable. He's now receiving palliative care and just had his first comprehensive bloodwork since the MO's on June 30. At that time his PSA registered at 6.92. Today's results are 40.28 and I've been compmaring his Aug. and Sept. Basic Metabolic Panels as well. His GFR has plummeted from 85 in June to 61 now and his creatinine is trending up from 95 to 1.22, the highest it's been since original surgery in 2014. I know both are still in "normal" range (barely) but know they're going in the wrong direction. Some of this is probably because his most recent Echo showed his EF is down 4 points and obviously his heart is pumping less blood to organs like kidneys. I've also read that losing muscle mass contributes to kidney problems so ADT seems contributory as well. Doctors won't commit to saying what it all means, but coupled with the fact that the MO said in January that w/o treatment his prognosis would be about a year.....what can we expect? Do/can things "change on a dime" or will this probably be a slow decline? I know none of you has a crystal ball but some of you are quite experienced in way more than I am. I'm thinking he may be switching to hospice pretty soon. I'm trying to be prepared as much as possible and appreciate any light you can shed on this disaster. Thanks in advance!
Asking for best guess info: As I've... - Advanced Prostate...
Asking for best guess info
Why switch from palliative care to hospice?
Actually he already qualifies for hospice because of his CHF but he chose palliative for now since he's still ambulatory and in pretty good shape...considering. It seems like the numbers are pointing in a considerable decline/uptake so I guess I'm expecting the worst while hoping I'm wrong. Because his original surgery resulted in acute kidney failure, that's where I'm afraid all this is going.
I guess I'm looking for a little reassurance to help me get through this to help him when something happens.
How old is your husband.? I wish him peace in whatever choices he makes. God bless you both.
76...he's at peace and glad to no longer being tortured by SEs that were getting worse. He's also got an implanted defibrillator for his CHF that will be deactivated in 2 wks. It will continue to operate as a pacemaker but won't issue any shocks if he experiences heart failure. Thank you for your kind words.
the very best reassurance hubby has is you Shamrock. You are here advocating for him and trying to help every way you can. There isn’t much that any of us croakers can actually do except fight to delay the onset…. But you are there “ holding down the fort “ …so to speak. The fact that “ all this “ ( your hard advocacy) reassures him, should make you feel a little better too. You are doing the everything you can … giving it your all. That would make any of us croakers feel comfort and loved. What’s gonna happen is how it is … but making sure he is “ optimized “ ( his treatments fine tuned for comfort and max delay ) reassures both of you as much as can be.
❤️❤️❤️
Thank you!
In my experience the best estimate of how long we live, by the best doctors is still a wild ass guess.
As we near the end some people try to hold on and fight their destiny at all costs, and others accept the inevitable and are able to let go and pass in peace.
All that being said, all that any of us can offer you is support. Like Kaliber said, having a champion who loves and cares for us is what we want and need (even when we are grumpy and out of sorts), sounds to me like you are providing all of the support you can. Great job and thank you for being there.
Finally, I hope you also have the same level of support. Don’t forget to take time out to take care of yourself
You rock! Thanks for the very kind words. We've been married 58 years and have never faced anything like this. Just trying to anticipate when he'll start to feel pain or other symptoms. When he had his prostatectomy and suffered acute kidney failure he never had pain because they had him so sedated for 11 days....so I don't know what will happen as his kidney function continues downhill. I guess I consider myself more proactive than reactive and while this rotten disease has thrown plenty of unexpected curveballs at us already, I find myself still trying to stay ahead.
Sounds like a scary time, especially with as long as the two of you have been together. Feel free to message me if you need some support
I can feel the pain in your writing here. You are amazing, what more can you do ? You can continue to love your husband of 58 years, the way you've always done. That will be the greatest care a man could ever wish for.
We send our love to you 🥰
😔 I don’t know what I would do, honestly….maybe give some alternative therapy a try at this point?? I do not like them in general even if some have some study supporting them (I am trying to reach the original researchers for some of them) but the idea of being so powerless scares me and makes me sad. I can only wish you to have the strength to face whatever will get in front of you.
My advice: drink some low sodium V8 juice frequently.
Of course it's too late now to avoid the ADT but I think that it most definitely contributed to his heart issues. My husband is stage 4 and because he has 5 stents in his heart we chose monotherapy instead of ADT. It does not medically castrate like ADT does, testosterone is in normal range, it keeps the testosterone from getting to and feeding the cancer. Remember, it's all about the money. He takes 50mg of Casodex daily and his PSA plumetted. The cost is $5 month instead of $1,000 month for ADT. When going on monotherapy do not go on any of the new drugs but stick with Casodex which is tried and true. Also, the only side effect is possible breast enlargement, but none of the others that you have with ADT.
Casodex, aka Bicalutamide, is pure dynamite. One half of a tablet (25 mg) every 5 days keeps my PSA at 0.010. Find the Minimum Effective Dosage for your husband's case and move away from the standard one. Don't you say: "Abuse it and loose it"? Ancient Greeks had such a proverbial phrase: "Ουκ εν τω πολλώ το ευ" freelly translated as: "More isn't better".
He was on bicalutamide early on but it failed. If you take it again later it actually feeds the cancer....but thanks for sharing your experience.
Silly doctors are used to spouting silly assertions like the one you mentioned i.e. "feeds the cancer". Bicalutamide's behaviour doesn't alter with time. It's targeted cancerous cells evolve/mutate with time after the original hormone sensitive cells have been driven to extinction, thus facilitating the proliferation of their resistive counterparts. That is the reason for which I don't take the standard MEGA dose of 50 mg/day which is a tenfold more than what is effective in my case. If your husband took the MED instead of the MPD then failure could had happened later.
to Shamrock 46,
While trying to convert the Irish into Christians, St. Patrick used the shamrock to explain the holy trinity with each leaf representing the Father, Son and Holy Spirit. The three leaves of a shamrock are also said to stand for faith, hope and love. A fourth leaf is where we get the luck from.
You indeed have all 3 of the attributes described in a Shamrock clover, I pray that your get the fourth leaf (luck) for you dear husband of 58 years.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 10/06/2023 5:24 PM DST
Being Catholic, I am well aware of the shamrock's significance and have always been blessed with the luck of the Irish. I also count my blessings daily for my husband so each and every day is another blessing! As with other wives/caregivers I'm now faced with trying to maintain the balance between all that with the reality of anticipatory grieving. God help us all!
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