After more than five years of fighting this beast, my body cannot tolerate the plivutco so it is time to give up the fight, this site gas given me valuable information and hope. thank you for being there for me and God bless.
Decided to go into hospice: After more... - Advanced Prostate...
Decided to go into hospice
Written by
Muffin2019
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33 Replies
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Have you checked into "palliative care" rather than "hospice"? The difference is that "palliative care" is allowed to give you medicines like Mitoxantrone that act on the cancer to relieve pain, while hospice only gives pain meds and relief from other symptoms.
Very interesting point TA. One I haven’t seen discussed here before. I think a new post fully comparing the two would be very useful. Does your blog have a section on this subject?
Schwah
My mother died in such a facility in the Bronx (Calvary). The care was wonderful! There were 2 nurses for every 4 patients, daily doctor visits, pain management, nutritionists, full radiology facilities, amazing equipment for patient ambulation, daily arts & crafts, personal cleaning & grooming, and multiple religious facilities (chaplains for all faiths). They encouraged group social interactions. They didn't do "heroic" interventions, but if a procedure or a drug could help a patient feel better, they did it or sent the patient to a full-service hospital for it. Amazing place! I don't know if there is anything like it in the LA area.
That sounds absolutely wonderful. Alas, nothing remotely approaching that in San Antonio. Can't speak to the VA though, which has some marvellous programs.
Thats very interesting Tall Allen for the future should l need it, thanks for info. Hope that it helps Muffin 2019 good luck, cancer not easy to deal with and were all different . SheilaFx
Muffin, I’m sure that you did not make your decision lightly. I’m so sorry that your body is not tolerating the treatment well, you must be feeling exhausted and discouraged.
Thank you for being here for me (and for others I’m sure). We will continue to be here for you in return.
Take care my friend
I've been following you for a while because you've contributed much to my hope. I'm so sorry you are fading. May God guide you through your next steps. Peace to you friend.🙏
always a difficult and brave choice. I pray the rest of your journey is pain free and satisfying.
Schwah.
We have fought the good fight. You and me both, together in our final journey.
I was thinking of you, thinking the same thoughts.
Like Concerned-wife, my first thought after reading Muffin2019's decision was you. May both of you find ease of suffering.
I'm sorry to hear the news. You did all one could do. But there comes a time when aggressive treatment would do more harm than good. And when focusing on the quality of the remaining time is the way to go forward. I wish you all the best on this leg of a journey. And thank you for all the knowledge and experience you shared with us.
🙏❤💪
We'll agree with TA here. Had a kinda crisis the last two weeks with heavy pressure from PCP to start hospice. After researching, we weren't impressed at all. And have decided to keep on with existing palliative care outfit plus supplemental help as needed. We can a) keep our own docs b) get treated as much or as little as spouse wants and arrange for rehydration etc if it will make him more comfortable. Plus the novel pain treatments. Hospice seems to think only morphine -- which of course is cheap, but way too much of a sledgehammer for him at this point. We will supplement with private pay aides and, if necessary, nurses, plus a sizeable network of friends, colleagues and medical personnel of various stripes. And we are trying to engage a physician who will make house calls. We will probably have to go concierge for this, but concierge docs aren't outrageous here. $2000 per annum or less. Plus his oncologist has promised to order all the durable medical equipment such as beds etc.Our conclusion with hospice post Covid in our town was: there is a reason they are all for profit. They get $200 per diem per patient and you do all the work. They give you as little as they can in services (everything over the phone except for bathing once or twice per week and the occasional nurse visit. That is why hedge funds are buying them them up. That's just our town, our local reality; elsewhere there are non profits and some excellent providers.
Having said all the above, yesterday a trial dropped from the sky: we will be checking it out tomorrow and he will be making the decision as whether to try one more thing.
In the meantime both of us reading "the art of dying well" by Katy Butler. Can recommend.
Hopefully the Trial works out for you both. Best Wishes
Great post, Biobro. After medically retiring two years ago and pondering the nature of my existence (and specifically my purpose and importance), I quickly came to realize my survival has largely equated to a massive economic engine that has eclipsed anything I did in my career as an engineer.
Millions of dollars! Hormone therapy, immunotherapy, chemotherapy, radiation therapy, "targeted" therapy...! I've done it all and will do more for these enthusiastic doctors and their vast medical economy! Send my DNA to psychotherapy to finally see why it resents me and is "acting out"? Of course! Cancer is just my DNA's cry for help and this will surely get my DNA the help it needs! Inject me with a tailored molecule that attaches to PCa cells and gives them each a microscopic "Cease and Desist" order signed by a genuine Legal Oncologist?? Finally, cancer held accountable!! Zap my bone mets with the new Protogigafrex Linear Acceleromaton 5000 - now with menthol and genuine Naugahyde finish??? Sign me up - the future is NOW - #moreradiationplease!! Speaking of the future, you want to rebuild my c-spine with a tailored 3D printed titanium mesh cage with my name and serial number (this one is real)? Oooo - I'll finally be a crime-fighting superhero, indestructible but struggling with my mysterious past, romantic but macho! Or maybe I'll be the "Terminator, " wearing sunglasses indoors and constantly quipping "I'll be back...!"
Whatever it is, count me in, you wacky mad-scientist docs! Price is no object! Just look at me as I help medicine march ever forward! 🙄
Ugh. I am going to immediately download "The Art of Dying Well." Thanks for the recommendation. It is the most sensible concept that has entered my life lately. Peace to you and yours. - Joe M.
@SeosamhM, thank you. The book was recommended to us by a clinical psychologist friend whose father is walking the same path as spouse.
I agree with you on the medical industrial complex issues. I think this is why PCP was pushing so hard for hospice. Our problem is that he is permitted to see his patients in one of the for profit hospices here, but he is retiring in 4 weeks and his successor will not be granted the same privilege. So, rightly or wrongly, and probably foolishly , we have a strong sense of being abandoned. Also spouse's temperament has always been of the "make progress" variety and the perceived passiveness of hospice is grating on him. That may change, but if we can cobble together a decent system we'll stay out of it.
My husband has also stopped treatment due to SEs and 2nd recurrence. He qualifies for hospice due to the cancer and congestive heart failure but has chosen palliative care for now but can transition to hospice when he feels the need. They come monthly to check vitals, draw blood, monitor meds/pain level and no longer has to go to hospital/doctor for tests/visits. Medicare pays for all.
So sorry, Muffin. Holding you and those close to you in prayer.
Oh dang my Brother, so sorry to hear of the SEs from Pluvicto
My Best to you on the hopefully long, uneventful rest of your PCa Journey surrounded with the Love of Family and Friends.
SEs from meds/treatments vs the QoL is something that all patients have to make a decision on, but esp us guys here in the Forum.
Keep the Faith Brother💙
Sending Good vibes and Prayers out.
If you're interested this wonderful Hospice Nurse has great vids:
youtube.com/@hospicenursejulie
Hugs from CA - Randy
Enjoy every beautiful sunrise and/or sunset you are able 🌅🌄
I Wish you Peace in any choice you make!
In my prayer, we will see you on the other side.
I've been fighting for 10 years and Pluvicto failed me after 3 infusions and now I'm back on Jevtana along with carboplatin. I'm 62 years old and had a PSA of 1.56 and now stands at 20.89 thanks to Pluvicto. I'm far from giving up and I'm in minimal pain. I have many bone mets but they are in check. I have 3 more new uptake on my left side and that's what they are targeting now. I have the worst type of aggressive prostate cancer. Gleason of 9 and stage 4 since 2013. I'm treating this like a chronic condition and I will never give in. I realize every one's position is different. I wish you all the luck and hope you receive some miracle to reverse this dreaded disease. Fight on and never give up!
I don't want you to go. I'm sorry and thank you for your time with us.
It is my time ,QOL is bad cannot whayi used to do, cannot stand or walk and losing control of bowels and lastly no appitite.time to go home to God.
I almost didn’t respond to your post because I didn’t know what to say. I’m so mad at this disease! However, I felt compelled to let you know I’m thinking of you during this time of your journey. For whatever it’s worth, I think you are brave and I have nothing but respect for you. Thank you for all your meaningful contributions to this forum. Trust in gods plan and may you always fly with the angels. Just sent you a prayer. Hope you felt it. Xo
may G_d bless you.
I'm so sorry to read this post. You've fought long and hard and have contributed much to this community. We are grateful to you. God bless you sir.
I’m sorry to hear that you’re at a standstill in your treatment. I pray that you’ll be comfortable and enjoy this season with your family and friends. I hope that you’re able to find palliative care support such as Tall_Allen described. I’ll keep you in my prayers🙏
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